Uncle Jim Myers Kidney Stories 2 Podcast

Hello and welcome everybody!  Out guest tonight is the one & only Steve L. Belcher, RN, MSN, MS better known as Steve the Kidney Nurse.  Steve is a dialysis nurse expert, kidney advocate & author. He is also founder/Executive Director of Urban Kidney Alliance, Inc., a 501(C)(3) nonprofit organization dedicated to kidney disease awareness and education in urban communities at risk for kidney disease, diabetes, and hypertension. He has been involved in the kidney dialysis industry nearly 4 decades. He served in the United States Army from 1982-1985 as a 19 Delta Cavalry Scout during the cold war.  He currently holds 2 Masters Degrees, a Masters of Nursing Science with specialization in Leadership and Management, and Masters of Science in Health Education and Promotion both from Walden University. He also holds a Post Masters Certificate in Non-Profit Management. He is also a member of Golden Key International Honor Society and recipient of the Presidential Volunteerism Award (Gold Medal) from the President of The United States. His current books include “How to Survive Outpatient Hemodialysis: A Guide for Patient with Kidney Failure” “The Dialysis Patient Handbook of Information” and “Conquering The Big Three; A Guide to diabetes, hypertension, and kidney disease” He is currently working on a short film documentary titled “ The American Kidney Crisis. Tonight we are going to discuss his new Book, CONQUERING THE BIG THREE:A GUIDE TI DIABETES, HYPERTENSION AND KIDNEY DISEASE. Please give warm welcome to a great friend of the show, Steve L. Belcher, the Kidney Nurse! Video Link:https://www.facebook.com/share/v/zFKAuGtgdAFS6cak/?mibextid=oFDknk

Hello everyone and welcome! Tonight, I want to talk to you about my journey with Kidney Disease, PKD and my hearing loss. There is a relationship between Kidney Disease and Hearing Issues. Shortly after I was diagnosed with Polycystic Kidney Disease in 2012, I began to notice a swishing sound in my right ear. I attributed this to my bad allergies to common inhalents and I ignored it. I took my allergy pills and moved on with my life. Much like my allergies, I could feel the fluid occasionally run down my throat, so I really did not think very much of it. A few months later, I began to notice the fluid was building up causing pressure in my right ear. The fluid and the pressure were on the inside of my ear behind the ear drum. The pressure would reach a certain point where it would all drain out at once and stop. Again, I took no action.  A few more months later, the pressure became extreme and I began to experience vertigo, dizzy spells that incapacitated me to the point, that I had to call an ambulance to take me to the emergency room at St Anthony's Hospital in Crown Point, Indiana. They administered Valium that helped me, prescribed Meclizine & referred me to an internist. I did consult with the internist, who told me the 2 medications for Vertigo at that time, Valium & Meclizine only worked, " so-so" and I could expect occasional episodes of Vertigo again. He was right, the Vertigo episodes became more severe and more frequent. I then consulted with a pre-transplant nephrologist and an otolaryngologist at IU HEALTH in Indianapolis as part of my work up for a Kidney Transplant. By this time, I had been on dialysis for a while. I was diagnosed with Ménière's Disease. Ménière's is a disease of the inner ear that can cause a person to get dizzy and have trouble hearing. Meniere's disease is a long-term health problem. It often affects only one ear. Its exact cause isn't known. But a buildup of fluid in the inner ear seems to set off the symptoms. Meniere's disease can start at any age. Most often it begins between the ages of 40 and 60. It is a Rare Disease where fewer than 200,000 US cases per year are diagnosed. A Labyrinthectomy was performed. With this procedure, the surgeon removes the parts of your ear causing vertigo, which causes complete hearing loss in that ear. This allows your healthy ear to be in charge of sending information about balance and hearing to your brain. I did lose all of my hearing in my right ear. Recently, I have learned that there is a connection between Kidney Disease and Hearing Loss. That is the subject for tonight' s Broadcast. So I will share with you what I have learned. Video Link: https://fb.watch/qHu44Gj8hh/?mibextid=Nif5oz

Welcome Everyone! Today We have 2 Titans in the Kidney Advocacy Community, Elaine Perlman and Ned Brooks, who will talk with us about The End Kidney Deaths Act. This Act will provide all non-directed living kidney donors, those who give their kidneys to strangers, with a $50,000 refundable federal tax credit. The tax credit will be uniformly provided over a period of 5 years in the amount of $10,000 per year.  The End Kidney Deaths Act was created in response to the inability of the current system to end the shortage of kidney transplants that are desperately needed by those who are suffering from kidney failure in the United States. The current system of deceased donations and voluntary living donation is grossly inadequate. 42,000 patients are added to the waitlist every year, healthy enough to receive a kidney transplant. But the waiting time for a kidney kills many of them. The shortage of transplant kidneys results in 12,000 patients on the kidney waitlist every year either dying or getting removed from the waitlist because they waited so long that their health deteriorated, and they no longer are healthy enough to get transplanted. When these 12,000 Americans were first waitlisted, they were healthy enough to be saved by a kidney transplant. The waiting time killed them.  We have approximately 90,000 people on the kidney transplant waiting list and around 26,000 transplants per year; that is a success rate of less than 30%. Abysmal. We can do far better, and the End Kidney Deaths Act will get us there.  About our guests, ladies first. Elaine Perlman is making her second appearance on the Broadcast! She herself is a living kidney donor, who launched a chain of kidney donations. Elaine is an educator who has taught elementary, middle and high school students. Most recently, she was a Columbia University professor for six years and is now the Director of Waitlist Zero, an organization dedicated to providing a kidney transplant for all who need them. She is also a kidney donor mentor with the National Kidney Donation Organization. She has her own website at ElainePerlman.com. She also has her own YouTube Channel & helps to coordinate the One Kidney Clubs. She is the author of "Be the Parent You Wish You Had." Chances are you have seen her new videos on TikTok.  I am very excited to have the great Edwin (Ned) Brooks on the Broadcast. He is a living kidney donor as well as the Founder and Chairman of the National Kidney Donation Organization (NKDO.org). He is the President of the Coalition to Modify NOTA (modifyNOTA.org). This is the group that created and is advocating for the End Kidney Deaths Act. He is an Op Ed writer, check out his article in the LA Times, https://www.latimes.com/opinion/story/2023-07-09/kidney-donation-disease-transplant-ethics-national-organ-transplant-law, and a graduate from the Tuck School of Business at Dartmouth College. In the Kidney Advocacy World, he is a force to be reckoned with. Please give a warm welcome to both Elaine Perlman and Ned Brooks! Video Link: https://www.facebook.com/share/v/BJd3nRb8zjWTWned/?mibextid=oFDknk

Hello Everyone and Welcome! Tonight our guest is Lauren Drew, Director of Congressional Relations for the National Kidney Foundation, A Kidney Donor and gifted Kidney Advocate. Lauren is a team-oriented, mission-focused individual uses her my superior organizational and analytical skills to create and implement successful government relations and advocacy initiatives for all Kidney Patients! She is a Villanova University School of Law graduate, with a Bachelor of Arts Degree from George Washington University, where she was a Presidental Scholar. She previously worked as a Senior Manager for the National Hospice and Palliative Care Organization where she worked in State & National Advocacy. She has also served as a Political Compliance Attorney. This time of the year is a great time to talk to Lauren on the Broadcast, because the National Kidney Foundation is holding its 11th annual Kidney Patient Summit, organized and led by the National Kidney Foundation at the Capital Hilton in WDC. Voices for Kidney Health advocates will educate Members of Congress and their staff about the importance of protecting living organ donors; increasing funds for federal kidney disease awareness, education, and research programs; increasing access to home dialysis; and supporting a pro-kidney health policy agenda. Lauren heads up that effort. Tonight we want to talk to Lauren about some of the initiatives from the NKF that maybe discussed this year with our Members of Congress and that will be of interest to the Kidney Community. Those initiatives may include: • The Living Donor Protection Act (S.1384/H.R. 2923); • Appropriations or Funding for Kidney Research • The Honor Our Living Donors (HOLD) Act(H.R. 6020) would help more donors qualify for reimbursement when it comes to wages, travel, and caregiving, and is a critical step forward in our ongoing campaign for Transplants for All. This Act would increase the number of living organ donors that are eligible for federal financial assistance through the National Living Donor Assistance Center (NLDAC); • Living Organ Donor Tax Credit Act(S.1384) (H.R. 6171) would offer a $5,000 one-time refundable tax credit to living organ donors who were not reimbursed for the costs related to organ donation by the National Living Organ Donor Assistance Center (NLDAC) or another entity. This Act would help expand the number of living donors and provide more end-stage renal disease (ESRD) patients with kidneys by allowing all taxpayers the ability to recoup the costs associated with a kidney donation not covered by insurance through a refundable tax credit. • The Medical Nutrition Therapy Act(S.3297/H.R. 6407) Almost every Medicare beneficiary has at least one chronic condition, like kidney disease, that is often diet related. Medical nutrition therapy (MNT) is a key part of the care those beneficiaries need to address their kidney disease condition, but too often those patients don’t have access to this critical care. Two-thirds of Medicare beneficiaries suffer from multiple chronic conditions including kidney disease and medical nutrition therapy is a cost-effective part of care for many of these costly conditions. Expanded access to MNT is especially important for racial and ethnic minority populations that have long faced chronic disease health disparities due to socioeconomic inequalities and reduced access to health care, healthful foods and safe places to be active. MNT is a multifaceted service that includes nutritional diagnosis, therapy and counseling for the purpose of disease management. MNT is furnished by a registered dietitian and is integral to the prevention, treatment and management of chronic conditions such as diabetes, kidney disease, obesity, malnutrition, eating disorders and more. • Kidney Equity For All: Removing race and racism from kidney screenings was a great step in the right direction; Welcome Lauren Drew ! Video Link:https://www.facebook.com/share/v/7CSvcG76sAp

Hello Everyone and Welcome! Tonight our Guest is Mike Guffey, Dialysis Patient Citizens' stalwart, having served on their Board of Directors since 2010 as Co-Tresurer, Treasurer, & Voting Member with the Kidney Care Partners (KCP)and their representative to the Kidney Care Quality Alliance (KCQA). Mike served on the panel that created Medical Reconciliation Measurements. He has also served on the Kidney Community Emergency Response Pandemic & Infectious Disease Committees, including as Co,-Chair since 2016. Mike has since resigned from DPC Board and the (KCP and KCQA) in December 2022. KCER no longer meets regularly. He also served multiple terms with the National Quality Forum until they changed contractors. He is also a Kidney Transplant Recipient and Kidney Advocate. Mike is a Kidney Patient, who in April of 2008, crashed into dialysis. In January of 2012, he received a Kidney Transplant.   Mike has also become an able and capable Kidney Advocate with the Dialysis Patient Citizens'(DPC), traveling to WDC to speak with his Members of Congress on behalf of all Kidney Patients.   Please give a warm welcome to Mike Guffey! VIDEO LINK: https://fb.watch/p_cTbAVy_U/?mibextid=Nif5oz

Hello Everyone and Welcome! Tonight our guest is Wangare Waruingi Francis, from Kenya. She was a Pediatric Kidney Patient, who received a Kidney Transplant, then suffered a Rejection and is currently seeking a 2d Kidney Transplant.   Her Kidney Story begins at the age of 19, shorty after she had finished her secondary schooling. She became ill, was diagnosed with Kidney Failure & placed on Dialysis. She began the wait for a transplant. In Kenya, the law only allows one source of kidneys for transplantation, the living blood relatives of the recipient up to the 4th degree of consanguinity. Transplants are rare in her Country.  Fortunately, her older Sister was willing to donate. In 2011, they flew to India where the transplant took place. It was a success! The transplant lasted 4 years before her body rejected the kidney due to financial issues with her immunosuppressant medications. In addition, her Mother passed away. She nearly went into a severe depression, but through education about renal disease, she managed to overcome it. She returned to dialysis, where she has remained for the last 8 years. She has been doing well until recently, and currently seeking a 2d kidney transplant. Her doctor has recommended a transplant and she is seeking willing donors to help.  VIDEO LINK: https://fb.watch/pIbTrhFHua/?mibextid=Nif5oz

Good Evening Everyone and Welcome! Tonight our guest is Jennifer McClung, a Kidney & Heart Patient, who spent 17 years on dialysis, then became a Kidney Transplant Recipient and currently is a very active Kidney Advocate. Jennifer's Kidney Story starts when she was just 16 1/2 years old.  As an adopted child, she had no knowledge of family history of kidney issues, so it was quite a shock when she was diagnosed with kidney failure at such a young age Jennifer reports that for some reason, when she hit puberty, her kidneys did not grow with her body and a bad cold killed her kidneys. She saw the doctor multiple times for the cold, but the medication supplied to her didn't help. After the family doctor ordered an x-ray, the results showed she had pneumonia, an enlarged heart & severe anemia.  The doctor ordered treatment & iron pills. Afterwards, when her Father took her home, and showed the chest x-ray to her Mother, who had some medical training, her parents called a cardiologist. The cardiologist saw on x-ray that the heart was twice the size that it should be and prescriped Lasix, and labs to be taken the next day.   After a rough evening at home, her Mom took her to the hospital to have labs drawn. Later, it was discovered that Jennifer's creatinine was at 17. (A normal range for creatinine is .6 to 1.1 for women). Jennifer was immediately admitted to the hospital.  In April of 1998, she was then told her kidneys had failed, and a chest catheter was placed, so she could begin dialysis. Unfortunately, when the chest catheter was placed, they punctured her lung. She was rushed to the ICU, where her lungs were reinflated. This is when she was first told she was going to need dialysis until she had a kidney transplant. She was subsequently transferred to Children's Hospital, where it was decided to remove the chest catheter, place a peritoneal dialysis catheter and begin PD dialysis, with her Dad as a helper. She was on PD for about 10 years without incident, but later suffered a serious peritonitis infection. She was medicated, but the medication resulted in the loss of part of her hearing & part of her vision. After another 4 uneventful years on PD, in October of 2012, there was blood in her peritoneal line and a lot of pain. After an admission to the hospital, it was discovered that her heart was working at only 20% and there was a cyst that had to be removed from her ovary.  A pacemaker/deflator was inserted, so her ovary could be removed & another chest catheter was placed for hemodialysis until her abdomen healed. During her ovary surgery in May of 2013, the surgeon noticed a film all over her intestines, part of her colon & appendix.  The surgeon removed all her intestines, cleaned them off & replaced them, removed all of her colon and placed the intestines back into her abdomen. She woke up with an 8" scar. About a month later while on hemodialysis, the scar from the abdominal surgery began to leak, and she was rushed back to the hospital again, given medication and released.  At the end of July 2013, it was discovered that she had a major blood infection. She was admitted to the ICU & later transported to UCSF, where they redid the entire abdominal surgery.  Because of the damage done to get stomach, she was unable to return to PD. After a while on hemodialysis, she decided to become active on the kidney transplant list again.  After testing at UCSF, they thought she may need both a heat and kidney transplant. In the end, only a kidney transplant was needed. In December of 2015, she received a kidney transplant! The kidney was a perfect match & has been doing well ever since. There was one rejection episode, but Jennifer was able to fight it off. Since that time, Jennifer has become a kidney advocate for the NKF & recently went to WDC with the Dialysis Patient Citizens. Please give a warm welcome to Jennifer McClung! Video Link; https://fb.watch/pyA83xutN6/?mibextid=Nif5oz

Good Evening Everyone and Welcome! Tonight I have a very special Christmas Kidney Story to share with you! Tonight our guest is Robin Johnson Gunther, Mother of Mason, who is a Pediatric Kidney Patient & Recent Transplant Recipient! Mason, currently a 9 year old, red-headed boy's kidney story begins when he was just a toddler, who was taken to the hospital after it was discovered he was extremely swollen. He was then diagnosed with Kidney Issues, later subsequently diagnosed with Nephrotic Syndrome at the age of 2 1/2. (Later FSGS (Focal segmental glomerulosclerosis). Later Mason was placed on dialysis, meeting at least 3 days/ Week, Sometimes 4 days.. Mason has had both of his kidneys removed so dialysis was a must for him. Mason was listed for a Kidney Transplant at the University of North Carolina Medical School. Efforts were made to find a living donor, but most candidates were disqualified. Because of Mason's numerous health issues, he and his family have been staying at the Ronald McDonald House in Chapel Hill. They were there for a long period of time. Around the 15th of November, Mason received an offer for a kidney, but the kidney was disqualified. He also had a potential living kidney donor, but that didn't work out due to connection issues. Despite all of the issues, the family's Christian faith has carried them through Mason's trials. On December 14th, Robin received the call and Mason was transplanted on the 15th! Things have been going well for Mason. Please give a warm welcome to Robin Johnson Gunther and her son Mason! Video Link:https://fb.watch/pp53DD7PNr/?mibextid=Nif5oz

Good Evening Everyone and Welcome! Tonight, our guest is Dr Neera Dahl, MD, PhD, Expert in ADPKD, Senior Associate Consultant at Mayo Clinic, and Director of the PKD Foundation Center of Excellence in PKD at Mayo Clinic Rochester. Her main focus is on ADPKD and other cystic kidney diseases that mimic ADPKD. She is currently on Faculty at Mayo Clinic and has an Adjunct appointment as Professor of Medicine at Yale University School of Medicine, Section of Nephrology.  She had been at Yale from 2007 to Feb 2023, where she was instrumental in developing the Yale Inherited Kidney Disease Clinical Program and was the Principal Investigator for several ongoing clinical trials in ADPKD & maintained an active role with the ADPKD Registry. Her educational background is outstanding! She received her Bachelor of Arts from John's Hopkins in 1987. She graduated from Tufts University School of Medicine in 1996 and Tufts University School of Graduate Biomedical Sciences with a MD and PhD. She completed her Residency at Beth Israel Deaconess Medical Center (a major teaching hospital of Harvard Medical School) in 1999, & she became a Fellow in Nephrology from Beth Israel Deaconess Medical Center in 2002. She has won multiple Honors and Recognitions for her work over the years  Please give a warm welcome to Dr Neera Dahl Link to Video Broadcast:https://fb.watch/oZcDVcwvZw/?mibextid=Nif5oz

Hello Everyone and Welcome! Today our guest is Dr Rachel A Davis, Associate Professor, Liver Donor & Author of "LITHIUM AND THE LIVING KIDNEY DONOR: SCIENCE OR STIGMA? Dr Davis is an associate professor of psychiatry, with a secondary appointment in neurosurgery at the University of Colorado Anschutz School of Medicine. Rachel is also, a non-directed liver donor, donating the right lobe of her liver in January of 2022.  This experience fueled a desire to increase awareness and advocacy about living liver and kidney donation. She has written a research paper titled "Lithium and the Living Kidney Donor: Science or Stigma?" Her experience with donor denial and the use of therapeutic Lithium in the treatment of mental illness is telling and interesting. Please give a warm welcome to Dr Rachel A. Davis! VIDEO VERSION:https://fb.watch/oPjPolOmG-/?mibextid=Nif5oz

Welcome Everyone! Tonight Our Guest is Gene Blankenship, DPC Board Member, Kidney Advocate & Kidney Transplant Recipent. Gene is married and the daddy to four children ranging in ages from 5 to 19 years old. He lives in Northeastern Oklahoma on the state boarder of Oklahoma and Arkansas within the boundaries of the Cherokee Nation Reservation.  Gene is a Proud Cherokee.   Gene's first experiences with Kidney Disease (Polycystic Kidney Disease) was in the 1980s at the age of around 10 years old he would watch his Dad hook up to peritoneal dialysis port for PD dialysis. Unfortunately at the age of 12 Gene lost his dad immediately after transplant.  Gene has lost several family members and friends to the challenges of chronic kidney disease.  In 2003, he himself was diagnosed with PKD, On a routine visit to his doctor  it was discovered that Gene's blood pressure was very high. He was placed on blood pressure medication. Subsequent testing led to the discovery he had ESRD & had inherited Polycystic Kidney Disease.  He was placed on dialysis in 2019, almost 20 years after his diagnosis, Gene treated on dialysis 3xs/week at the Fullbright Dialysis Center at the Red Bird Smith Health complex on the Cherokee Nation Reservation. Treated in center for three years before receiving his transplant. He was listed for a Kidney Transplant at 3 different Transplant Centers, in 2 separate regions of the United States, including The University of Arkansas Little Rock, Integris Health System in Oklahoma City, and St. John Ascension in Tulsa, OK. Gene recieved his transplant at the University of Arkansas in Little Rock on 2-9-23. I particularly respect Gene for some of the life choices he has made from his life experiences and his faith. "My faith in Jesus is something that has without a doubt carried me through challenging times." This is what has led him to become one of the very best Kidney Advocates in the country.  When Gene recieved his first transplant call. He and his wife, Stacy drove 3 hours to Little Rock and were all settled and checked in & prepped for surgery in when Gene received a call from his transplant coordinator, informing them that the Kidney was defective and unsuitable for transplant. Fortunately, Stacy is a Rock of support for Gene and they don't dwell on the bad, they move on. Gene keeps moving forward as an example for his children.  Part of that Moving Forward is Gene's tremendous work as a Kidney Advocate.  Gene has dedicated his life to helping others.  Gene is an advocate/lobbyists in his professional career. "As a former State of Arkansas and State of Oklahoma Child Abuse Investigator, I quickly realized the need for representation amongst my fellow state workers." As a Field Organizer with the Oklahoma Public Employees Association, Gene fights for better pay and benefits for the state employees of Oklahoma.  Gene is all about helping others This has continued in his Advocacy for his fellow Kidney Patients.  " Americans have limited access to legislators in D.C., which makes the mission of advocating much more important. I cannot stress the importance of your unique story. It needs to be told. I would encourage you to become a patient Ambassador, make phone calls, write letters, and become involved in your area." He works with a number of Kidney Advocacy Groups including being an Ambassadorfor AKF, NKF, and the PKD Foundation.  Gene is also a Champion Advocate for Goodness Village in Little Rock, AR where they provide housing for patients after transplant. I met Gene at last years AKF Summit in D.C. He is now a Patient Advocate and Member of the Board of Directors for the Dialysis Patient Citizens, who is recognized as a successful fighter for his fellow Kidney Patients everywhere! Please give a warm welcome to one of the very best, Gene Blankenship! Broadcast link;https://fb.watch/onQi0LhKoT/?mibextid=Nif5oz

Welcome Everyone! Tonight our Guest is Emmitt Henderson, III, better know as the Male Lupus Warrior! That is because only 10 % of Lupus Patients are men.  Males get lupus less often than females and may have different symptoms, as well. For example, males with lupus might be more likely to have a discoid rash or kidney problems. The reasons for the sex-based disparity is thought to be sex hormones, differences in the immune system, and genetics. Emmitt is the CEO of a group called Male Lupus Warriors. https://www.malelupuswarriors.org/. His Kidney/Lupus story starts when he was approximately 10 years old in 1980, when he had a rash all over his body, which they now believe mighty have been Discoid Lupus. This lasted about a year, then went into remission until 1995, when Emmitt was diagnosed with Systemic Lupus, the most common type of Lupus. SLE is an autoimmune disease where the immune system attacks its own tissue causing wide spread inflammation & tissue damage that in turn affects joints, skin, brains, lungs, kidneys and blood vessels. There is no cure for Lupus. So 15 years later, he had joint pains in his knees, wrists and shoulders that was so bad Emmitt went to the ER a number of times, only to be send home with the doctors saying they couldn't find anything wrong. Eventually, the pain settled all over his body all while he continued to work full-time as a Service Manager in an auto shop. This caused increased pain in his lower back until he was forced to go to Urgent Care.  They referred him to the hospital by ambulance for blood work. Emmitt ended up there for 3.5 weeks. Within the first 2 week they had done extensive blood testing with no diagnosis. On the 19th day, a Rheumatologist told him that he may have a disease that is rare in men, Systemic Lupus Erythematous. She told him he did not meet the normal profile, and she would need to run more tests to confirm. 4 days later that diagnosis was confirmed.   Emmitt began to learn about the disease. He learned it was primarily a woman's disease & rare in men, that 1 out of 10 men are diagnosed with Lupus compared with women. For the first 3 years , Emmitt kept this to himself. He was getting numerous flares and hospitalized frequently.  Through all the years , Lupus has effected almost every organ in his body, notability his brains & his kidneys. He has had a. Bone Marrow Stem Cell Transplant, A Kidney Transplant, a Right Knee Replacement, A Left Shoulder Replacement, had his Gall Bladder removed, had Lung Failure, been diagnosed with Rheumatoid Arthritis, Sjogrens Syndrome, Mixed Connective Tissue Disorder, Gout & Shingles. He has gone through Chemotherapy and Radiation, has been on Peritoneal Dialysis for a year before his first Kidney Transplant. He has had Ulcers in his throat and esophagus, which caused his to close, so he was fed with a breathing tube. He has gone through Cardiomyopathy of the heart due to heart failure and because of the heart failure, placed into a chemically induced coma . After 3 weeks, he had to go to rehab to learn to walk, talk and use his limbs again. He was on 30 pills a day at the peak the steroid he was on led to a 45 lb weight gain. Depression became an issue, but Emmitt is mentally tough and fought back.   As a result, he created the NFP Organization, Make Lupus Warriors and became THE voice for men with Lupus, publicly advocating and telling his story, that has inspired others. He has many awards, accomplishments,  recognitions & achievements. After a recent trip to Africa, trying to climb Mt Kilimanjaro, he developed Altitude Pulmonary Edema and his transplanted kidney failed. He is actively seeking a new kidney.  Currently he is on dialysis & on the transplant list. Please give a warm welcome to Emmitt Henderson III, Male Lupus Warrior! Video Link; https://fb.watch/o5liZByKi7/?mibextid=Nif5oz

Good Evening and Welcome! Tonight our guest is John Bayton.   John Bayton is a passionate consultant and advocate for the renal health community. He was diagnosed with end-stage renal disease (ESRD) in 2004 and has since undergone two kidney transplants, with his most recent on February 27, 2019, at MedStar Georgetown Transplant Institute (MGTI).   John was recently appointed to serve a three-year term on the Organ Procurement and Transplant Network’s (OPTN) Minority Affairs Committee. OPTN is the national organization responsible for the acquisition and distribution of organs. This year, John became an affiliate member of the American Society of Nephrology (ASN), the nation’s largest organization of nephrologist and kidney health professionals.  He is a member of the University of Manitoba’s Sexual Orientation & Gender Identity (SOGI) Advisory Board, and a consultant and SME for Centers for Medicare and Medicaid Services’(CMS) ESRD Network 5’s Patient Advisory Committee (PAC) managed by Quality Insights.  John is the newest member of the Kidney Research Institutes Patient Advisory Committee (KRI_PAC), a collaboration between Northwest Kidney Centers and the University of Washington Department of Medicine. John is an active patient ambassador and subject matter expert (SME) for the American Kidney Fund, Infinite Legacy, and the Coalition for Supportive Kidney Health (CSCK). He is a former member of the American Society of Transplantation (AST) Transplant Community Advisory Council (TCAC) and was the first patient advocate to serve on AST’s public policy committee.   John Bayton has been a resident of Washington, DC for nearly 24 years. He has long been an advocate for LGBTQ rights and healthcare.  In 2003 he served with Servicemembers Legal Defense Fund which lead to the overturning of "Don't Ask Don't Tell'.  From 2009-2012, John led a national HIV AIDS campaign at the bequest of the Office of HIV/AIDS and Infectious Disease, Office of the Assistant Secretary of Health, US. Department of Health and Human Services.  Today, John serves as executive producer for Capital Pride Alliance and is preparing for Capital Pride 2024, and World Pride 2025 which will be hosted in Washington, DC. On Wednesday, October 18, John was presented with the American Kidney Fund’s “Hero of Hope” award during its annual Hope Affair Gala.  Earlier this year, John was recognized by the Capital Pride Alliance with the Bill Miles Award for Outstanding Service.   John attended Washington and Lee University, in Lexington, VA, and majored in political science and technical theater. He is also a Certified Meeting Planner (CMP) and a Certified Government Meeting Planner (CGMP). John specializes in public relations, marketing, and strategic business development. He is the founder and CEO of Brandon in DC, a lifestyle, hospitality and culinary public relations and event planning firm. He is a passionate advocate for social change, and keen on addressing the disparities that exist in our society. John enjoys amateur photography, is a bit of a foodie, and loves to indulge in science fiction and technology. Please give a warm welcome to John Bayton! Link to Video:https://fb.watch/nPeWKOJVTP/?mibextid=Nif5oz

Hello Everyone and Welcome to the Broadcast! Our guest tonight is Richard Kellner, the founder of Polycystic Kidney Disease Foundation. Richard is here to  discuss preimplantation genetic testing (PGT) and in vitro fertilization (IVF) so Parents Don't Pass PKD to future generations. Is this a possible way to End PKD? Richard was married to Jo Kellner and they had 2 beautiful children. His wife Jo was diagnosed with Polycystic Kidney Disease. At that time, they were told there was "nothing to do but wait until her kidneys failed." Jo's Kidneys eventually failed. In 2014, Richard was found to be a match and donated a kidney to her.  It was also discovered that Jo had passed her PKD along to both of her children, and that some of her family members had also been diagnosed with PKD. Richard and his family learned that there are ways to slow the progression of PKD and to prevent it from being passed down to future generations. His children follow a protocol of medication, diet, and lifestyle changes that help to slow their progression. Unfortunately, Jo passed away in 2021.It became a passion of Richard's to help others, to allow Jo’s legacy of warmth, strength and generosity to live on. "We knew we had to do something to help other families who are suffering from PKD." It then became Richard's Goal to goal to give others access to information and solutions and to fight to end this disease. He creating the PKD Outreach Foundation, (www.pkdo.org) to spread awareness and education, "especially to the parents of the 20- and 30-year olds to know that there are options for their children. I want them to know that there are ways to manage the disease and especially that there is a way to eliminate it in the next generation. We don’t want children to be born with this disease." To find PKD & possibly to eliminate it, the PKD Outreach Foundation recommends, supporting live kidney donations to shorten the wait times for a kidney, to slow down the progression of the disease, and most importantly, to end PKD in your family by preimplantation genetic testing (PGT) and in vitro fertilization (IVF) so Parents Don't Pass PKD to future generations. This will be the focus of our discussion this evening! The pkDO is so dedicated to end the threat of PKD to affected families, that under certain circumstances they will help with funding the cost of PGT-M. Please give a warm welcome to Richard Kellner! Video Link: https://fb.watch/ndZALha-VF/?mibextid=Nif5oz

Hello Everyone and Welcome! Tonight our guest is Ed Hearn, 4x Kidney Transplant Patient, World Series Champion, Author, Award Winning Speaker, & Ambassador for NephCure. Back in 1986, Ed was with the New York Mets when the won the World Series against the Boston Red Sox.  But Ed's real claim to fame has been his ability to raise awareness and to inspire his fellow kidney patients! Ed retired from MLB in 1991 & took a job selling Life Insurance for New York Life. Unfortunately, his health became an issue. Ed's first indication of kidney problems occured in high school, when during a physical in the early '70s, he was told that the creatinine level in his blood was unusually high. By July of 1991, Ed was diagnosed with Focal Segmental Glomerulus ketosis (FSGS), a kidney disease where the glomeruli, the tiny filtering units inside your kidneys that clean your blood are damaged. With FSGS, these filters are scarred. He also suffered from Hypoglalmmaglobulinemia, causing him to have difficulty fighting off infection and Sleep Apnea. By April of 1992, Ed began dialysis. Shortly thereafter, he received the first of 4 kidney transplants from a young man who died in a car accident. His body began to reject his transplanted kidney.  To save his kidney, he was taking 30 pills/day, but the anti-rejection medicines attacked his immune system, making him even more susceptible to infections & viruses. By 1993, he was in such despair and depression that he contemplated suicide. Fortunately, Ed is a man of faith, and he sensed the hand of God reaching out to him. In the fall of 1993, Ed was asked to speak to a Rotary Club. It went so well the Rotary Club President asked Ed to speak to corporate groups. Ed had found purpose in sharing his story, "What I was meant to do was impact people’s lives.” He looked forward to his talks more than playing MLB, he was able to motivate and educate his audiences. He was awarded the Certified Speaking Professional designation (CSP) from the National Speakers Association. Only 8 per cent of the speakers throughout the world receive this distinguished honor. Ed also operates a charity called The Bottom of the Ninth Foundation, which is a mentorship program for children. He has also written a book, Conquering Life’s Curves – Baseball, Battles & Beyond. He also works with the NephCure Foundation, that funds research into the causes of FSGS.  He has had experiences with skin, head & neck cancer. Ed had a 2d Kidney Transplant in 2000 & a 3rd Transplant in 2002. What we are going to focus our discussion in this evening is Ed's 4th Kidney Transplant which took place in May of 2022 at the University of Minnesota Kidney Transplant Center in Minneapolis, where through a Mets fan, Brandy Graze,who did not match Ed. But through her generosity and the National Kidney Registry, Ed obtained a Voucher, placing him at the top of the transplant list, ultimately leading to a living kidney donor transplant from Jamie Klein-Rye! Please give a warm welcome to one of the best motivational & inspirational kidney speakers ever, Mr Ed Hearn is here tonight. Video Link:https://fb.watch/mXxaRwXWS5/?mibextid=Nif5oz

Hello Everyone and Welcome! Tonight,our guests are Jennifer Aromanda and Stephanie Straffi. Jennifer is a Kidney Patient whose Kidneys failed as a result of the COVID-19 virus and Stephanie is her partner and dedicated caretaker. Jennifer is seeking a Pre-emptive Kidney Transplant at this time (a transplant before dialysis). Prior to March of 2020, Jennifer was a very healthy person, maintaining a vegan diet as a fit, healthy and physically active person. She led what she refers to as a joyful, active and healthy life. Jennifer was a heathcare professional, a Registered Nurse working for 27 years , mostly in New York City with patients in the field of psychiatric and substance in both the role of a frontline practitioner and a director of an outpatient clinic. Jennifer was very, very dedicated to helping her patients build healthy, stable, and successful lives for themselves and their families.  At one point, she retired from a company she had worked for after 18 years to take a per diem position in a residential treatment setting for those with mental health & substance abuse issues. She worked in a medical office in close daily contact with her patients and members of the staff. Unfortunately, in March of 2020, she contracted the COVID-19 virus and after 2 months was forced to leave her job again when she learned the virus had significantly damaged her kidneys.   She sought out the services of a Nephrologist and began a course of treatment. Shortly afterwards, she learned her kidney function had worsened. Jennifer was hospitalized twice in 2022, deeply frightening and traumatic experiences for both her and Stephanie. Stephanie now acts as her Caretaker. This change in her medical condition has had a very traumatic effect on Jennifer's life as she and Stephanie have to constantly monitor her her symptoms, her medications and grapple with the possibility of dialysis or death. Jennifer is seeking a Living Kidney Donor to help her obtain a better life. She is currently listed at Weil Cornell NYC Her transplant coordinator is Arielle Nelson<> and her contact information there is . Also UNC Jessica Martin 984 974 7544 JessicaMartin@unchealth.UNC.edu She is currently working with Kent Bressler and Shannon Mulroy at Kidney Solutions, helping to mentor her and find a living donor.  Please give a warm welcome to Jennifer Aromanda and Stephanie Straffi! Video Link:https://fb.watch/mQr5Hgkw2m/?mibextid=Nif5oz

Welcome Everyone! Tonight our guest is Cynthia Infante, 2x Kidney Transplant Patient, NKF Peer Mentor and Kidney Advocate with the National Kidney Foundation, The American Transplant Society, Power to Serve & UCLA's Living Donation Project. Cynthia is special because even though she has has Chronic Kidney Disease and End Stage Renal Disease, the main focus of her Advocacy is " to help others understand that they can have a great quality of life and not give up on hope." Cynthia's Kidney Journey began when she was just 15 years old, when she was diagnosed with kidney disease. By the time she was 19, she was placed on In Center Hemodialysis. She was the youngest person in her group. In 1995, she was placed on the transplant list, and at the age of 25, recieved her first transplant from a non-living kidney donor. Cynthia worked and studied hard, and in 1997, graduated college with a degree in Respiratory Therapy. Afterwards she began working at a local hospital. In 2000, she married Domingo and in 2001 she gave birth to her beautiful daughter, Hailey. Unfortunately, her original transplanted kidney failed in 2015 after 20 years, but in July of 2015, she received a new kidney transplants from a Live Donor, her cousin Jacob. Her 2d Kidney Transplant is still going strong today. Because of Cynthia's experiences as a teenager & as an adult heathcare worker have inspired Cynthia to help other understand and cope with Kidney Disease. Because of her uniquely positive outlook, she has become a Patient Mentor at Banner University, a Peer Mentor with the NKF, a Member of the NKF Kidney Advocacy Committee, an elite group of top-flight Kidney Advocates, a Power Player with the American Transplant Society's Power 2 Save and a stalwart with UCLA's Living Donor Project. Ladies and Gentlemen, please give a warm welcome to Cynthia Infante! Link to Broadcast With Video & Sound:https://m.facebook.com/story.php?story_fbid=pfbid022tjNaLP16UUByzqCLv3SVnR5J87Fx3ftraa7ZQ2bECHCJzHi8wJEymzco18ri2mdl&id=100043440381744&mibextid=Nif5oz

Hello Everyone and Welcome! Tonight our guest is Bruce Tippets, Sports Reporter, Transplant Recipient and Co- Founder of Dreams UTWY. Bruce is a Sports Writer for UB media for over 7 years. His concentration is in the Utah/ Wyoming general area, but he also has traveled across the country to cover sporting events. Bruce was a healthy person until 2009. According to his wife of 25 years Stephanie, "Five years ago Bruce Tippets started his fight for life. He stayed in the hospital for six weeks recovering from double pneumonia. His heart stopped several times and his kidneys shut down." He was on dialysis for 4 1/2 years. On October 18th, 2018, Bruce received a Kidney Transplant at the University of Utah. https://healthcare.utah.edu/transplant/kidney. Since his Kidney Transplant, Bruce has made a conscious decision to give back to the Kidney Community and Children as a Kidney Advocate for the NKF & the AAKP in meeting with his Members of Congress and through his Charitable Foundation, Dreams in Motion UTWY. Dream in Motion UTWY' along with Bruce's Co-Founder, Joel Brown, is a Non-Profit Charitable Organization that makes Sporting Dreams come true! https://dreamsinmotioncharity.com/(Website) https://www.facebook.com/DreamsUTWY?mibextid=ZbWKwL(FB page) Some of the examples of what Dreams UTWY does would include: • Hero Lance Beckert and co founder Bruce Tippets during batting practice before Monday's game with the Angels and the Yankees in Los Angeles! Angels won 4-3. Beckert received a kidney transplant last year. He works at Utah State. He us a huge Yankees fan. • Dreams in Motion had the opportunity to honor Michelle Turner from Cheyenne, Wyoming, during the Denver Nuggets vs. Milwaukee Bucks game on March 25. Turner, her daughter, Alyssa, and grandson had amazing seats right in front and had permission from the Nuggets to attend shoot around before the game. Turner received a kidney transplant in November. She is now a dialysis nurse. We can’t thank Michelle enough for all that she does in the Cheyenne community… To complete the night, the Nuggets won big!! • Dreams in Motion honored Garrett Snelgrove from Morgan recently at a Utah Jazz game with the Spurs. Snelgrove, who is 12 and has battled cancer, had the opportunity to have a first class experience with the Jazz. Dreams in Motion wanted to thank Craig and Brody Bolerjack, Alema Harrington, Bailey and coach Hardy along with the Jazz players for all they did to make this an experience Garrett won’t forget in a long time. I know Snelgrove had a great time along with his family. This is one of the many reasons why I’m a Utah Jazz fan for life. Go Jazz.!!. Please give a warm welcome to Bruce Tippets! VIDEO LINK: https://fb.watch/lZfiZfvLo3/?mibextid=Nif5oz

Hello Everyone and Welcome! Tonight our guest(s) is (are) Gregory McNamee, a 25 year old young man (and His Mother Helene Da Pabarber Aldorasi-Markos). Gregory is currently suffering from End Stage Renal Failure, & has been on dialysis for close to 4 years, and is seeking a Kidney Transplant. The cause of Gregory's Kidney Failure is unknown. He is currently on Hemodialysis temporarily and hopes to return to his original dialysis modality, Peritoneal Dialysis at home, 7 nights a week, 9.5 hour sessions every day. Gregory was very sick in January 2023 with Food Poisoning which later developed into Peritonitis. He was then hospitalized over a week and his PD Catheter had to be removed. A Chest Catheter was then temporarily put in place. As a result, he has been doing Hemodialysis and has been very sick. He is scheduled today to have his PD Catheter replaced and his Chest Catheter removed. Dialysis has been rough on Gregory, who has suffered from frequent hospitalizations and complications. Recently, his health has become much worse and this has made his search for a Kidney Donor much more urgent! Gregory is currently listed for a Kidney Transplant at Penn Medicine in Philadelphia. To fill out an application to begin the donation process for Gregory go to https://penntransplant.donorscreen.org/register/now?fbclid=IwAR3pjAalTsNNas2rvP5PN7GYMeWsJrkN9uk7rI4aHE7qL-JXJ32f4QJMpxQ He is looking for either a direct donation or Penn Medical recognizes Paired Donation. He is also working with The National Kidney Registry's EJ Tamez at 475-350-7114 or EUSEBIO.TAMEZ@KIDNEY REGISTRY.ORG. As a donor with the NKR, many protections under the Donor Sheild Program are offered including, Cost Reimbursements for lost wages, traveling & lodging costs, Kidney Prioritization, where if in the future, if the Donor ever needs a kidney, he moves to the top of the transplant waiting list, Remote Donation, so you can do all your pre-donation testing and the actual donation surgery near you, Best Match, so your donated kidney goes to the best match possible, Legal Support, to fight termination and discrimination, Complication Protection, reimbursement for complications costs, Reduced Time, a more streamlined donation process & even blood draws at your home. This also makes Gregory eligible for Voucher Donation, where someone donates on your behalf to a 3rd party and you are not only placed on the top of the list but are given the quickest match. Here's the link to the NKR's online Donor Screening Process: https://nkr.donorscreen.org/register/microsite?id=2045&donationType=0 There's also a Go Fund Me link to help with uncovered costs: https://www.gofundme.com/f/f2hyaa-kidney-failure?utm_campaign=p_cp+share-sheet&utm_medium=copy_link_all&utm_source=customer Before Gregory's Kidneys failed, he was a very active, independent guy. A Kidney Transplant for him means a return to the activities he loves and less of a burden on his family. Please give a warm welcome to Gregory McNamee (and His Mother Helene)! Link to video Broadcast:https://fb.watch/lQUPsd8mXO/?mibextid=Nif5oz

Welcome Everyone! Tonight our guest is Chelsea Roman, Lifelong Kidney Patient, Health Fighter, Kidney Transplant Patient, Kidney Advocate, & Patient Consultant. Chelsea was stillborn in 1984, coming out blue and not breathing by cesarian delivery & weighing only three pounds. The doctors and nurses were able to revive Chelsea but she had no kidney function at all for the first month of her life and was in an incubator for the first 2 months. She was bloated and not urinating. Chelsea finally began to better and After 3 months was sent home with 25% kidney function.   The medications she was given left her vision and severe hearing loss and a speech impediment. She has spent a lifetime in nephrogists offices. She constantly had lab draws to be reviewed.  Her parents stressed maintaining her kidney function to avoid dialysis and to work towards getting a kidney transplant.  Chelsea grew up  religiously drinking tons of water and avoiding salt. Chelsea lost her Father at the age of 4 to cancer. Her mom then moved her and her elder sister from  LA to Northern California to be closer to her grandparents, aunts & uncles.  Her mother worked a lot because of Chelsea’s health issues and was supporting her & her sister.   By 2008, her Mom was suffering from a lot of pain, and was diagnosed with ovarian cancer.  She died 2 days later. To step in for her mom and to keep Chelsea on track with her appointments, Chelsea at the age of 24 had to become more responsible for her kidney care.  Chelsea had to work to preserve her kidney function by keeping up her labs, nephrology appointments and diet. Chelsea became more proactive about her health.  She decided to take BRCA gene test, a blood test that determines if you have mutations in your breast cancer genes, BRCA 1 or 2. She tested positive for BRCA.  In 2012, she had a double mastectomy with reconstruction, a year long process. In 2017, she was diagnosed additionally with thyroid cancer. Half of her thyroids were removed. Also, in 2017 her kidney function dropped from 25% to 9%. Chelsea then had to start dialysis! Chelsea then began to start the process in earnest to find a Kidney Transplant.  She was active on Social Media, printed our magnets, & gave them to all of her friends and family. They in turn drove around with magnets on their cars saying Chelsea needed a kidney.  She did whatever she needed to do to get her story out there. Over 20 people tested for Chelsea to donate a kidney.  Chelsea is a B+ blood type which is a tough type to match as only 9% of the population is B-positive. Chelsea was very active and traveled quite a bit even though she was on dialysis as she did not want dialysis to define her. Chelsea did have a false alarm kidney call, but in November of 2019, she got the call at 11 pm to be in the hospital at 6 am because they had a perfect match kidney for her. On Sunday, November 17th, 2019, after a 35 year ordeal, Chelsea finally received her new kidney! Chelsea has taken excellent care of her new kidney, taking 35 different kinds of medications initially.  However, within the first  2 weeks she developed COVID.  She survived that. Chelsea made a decision to give back after all the adversity in her life.  She now is a Kidney Advocate and she has a job where she educates and advises people about dialysis. Please give a warm welcome to Chelsea Roman! Link to video Broadcast:https://fb.watch/lEsbphW8WE/?mibextid=Nif5oz

Welcome Everyone! Tonight our guest is Maria Elena Grijalva, 2023 NKF Winner of the Celeste Castillo Lee Patient Engagement Award, Native American/Hispanic/Farmworkers/High Risk Population Kidney Advocate & 36 Year Kidney Transplant Recipient! She has been advocating for people who are at risk of Kidney Disease and had little assistance for over 36 years. She has been the leader of the patient-run Valley Renal Support Group for over 25 years, a staunch supporter for all affected by Kidney Disease! Through the group, she has coordinated meetings and speakers, serving four county-wide communities every month. She has been previously chosen as KSEE's 24, Woman of the year and Tulare City Council's 1st Council District International Woman of the Year in 2020. On April 13th in Austin, Texas at the NKF Spring Clinical Meetings, Maria was awarded the 2023 Celeste Castillo Lee for patient-centered care and empowerment for her work & efforts to educate Native American people, farmworkers in agricultural communities in California as well as those underserved, undertreated patients in high-risk for kidney disease communities. NKF President Sylvia Rosas, MD, MSCE says of Maria, "I first met Maria at the 2020 Congressional briefing and was impressed by her dedication to raise awareness of kidney disease in her community, particularly in individuals of Native American and Hispanic backgrounds. She gives so much to others with kidney disease,”  It is dedicated volunteers like Maria and their relentless work to improve the lives of people facing kidney disease that provides us the inspiration to continue to do our work.” Maria sums up her experience like this: “It is an incredible gift to receive a transplant and it has given me the power to educate others about prevention, understanding their kidney disease, and to advocate for themselves with their healthcare team.  The National Kidney Foundation has always supported me and encouraged me to engage in ways I’ve never dreamed. This award means that NKF has recognized my commitment in educating those high-risk populations about kidney disease. I couldn’t be more proud.” Please give a warm welcome to Kidney Advocacy Superstar, Maria Elena Grijalva! Video Link: https://fb.watch/kvOCgngrNi/?mibextid=Nif5oz

Hello Everyone and Welcome! Tonight our guest is 21 year old Isaiah Gadberry, a Kidney Patient, Dialysis Patient & Kidney Transplant Candidate. You may have seen his posts requesting kidney donation and for all of us to share his need for a kidney. Isaiah and his twin sister,.Anastasia, were born prematurely in 2002. His kidneys were underdeveloped. He was eventually diagnosed with kidney problems(Nephpropathy of prematurity?) at the age of 1, and was sent to Arkansas Children's Hospital under the care of Dr Ellis.  In most cases, the baby's kidneys mature quickly after birth.  Isaiah was not so lucky. He was put on peritoneal dialysis for the first time at the age of 5.  The doctors had to surgically reconnect his bladder to his belly button so he could be catheter, due to a kink in his urethra.(Mitrofanoff procedure?) His mother & sister helped to connect him for PD at night. Eventually, Isaiah was put on the transplant list and got THE CALL at the age of 8.  After transplant, he was feeling much better, he could run and play with his siblings & went back to school. Unfortunately, at the age of 14, his health began to decline. Isaiah had RSV(Respiratory Syncytial Virus) pneumonia and HMPV (Human Metapneumovirus)which made his kidney function worsen. He was put back on peritoneal dialysis. When he was 17, he was placed on hemodialysis because he was having problems with the machine at home.  At first he liked hemo but he developed mental health problems and eventually had problems with that machine as well. He was eventually admitted to the hospital for 2 weeks where he was diagnosed with uncommon bacteria on his hemo catheter.  Eventually, he was put back on PD. He turned 18 in 2020 and unfortunately despite his best efforts, caught COVID-19. He began to retain fluid & suffered from HBP. He had a rough hospital stay and was unconscious for most of it. After his release, he was on hemo for a while, then put back on PD. By the time he was 19, he had been on dialysis for 6 years and it was time to be re-evaluated for kidney transplant again.at University of Arkansas for Medical Sciences (UAMS). In November of 2021, he was placed on the active transplant list. He was placed at the top due to his time on dialysis. Isaiah has had  2 Kidney Offers since that time, one on April 4th, 2022, when the donor kidney was rejected & a second on April 5th, 2023 where the kidneys went to other patients. Isaiah is now 21 and is still looking for a kidney. The link to sign up to donate to Isaiah online is https:/apps.uams.edu/Living Donor/prescreen. or call 501-686-8000. Please give a warm welcome to Isaiah Gadberry! VIDEO: https://fb.watch/kmdt2FoLqt/

Hello Everyone and Welcome! Tonight our special guest is Stephanie Lynn Mosier, a Gitelman Syndrome and Polycystic Kidney Disease Patient. My friend! At birth, Stephanie was diagnosed with PKD, heart, liver, blood clotting issues & organ failure. As a child, Steph grew up in and out of hospitals with multiple surgeries to combat things related to Gitelman"s Syndrome. She was not officially diagnosed with Gitelman's until 2018, when she moved to Pennsylvania. Gitelman's syndrome is a very rare kidney disorder that causes an imbalance of charged atoms (ions) in the body, including ions of potassium, magnesium, and calcium. The signs and symptoms of Gitelman syndrome usually appear in late childhood or adolescence. Only an estimated 1 in 40,000 people are affected by Gitelman's Worldwide. Symptoms include an imbalance if the charged atoms (ions) in the body including ions of potassium, magnesium, and calcium. Gitelman's can be diagnosed by lab tests to determine serum electrolyte levels, including low serum levels of magnesium & potassium and/or elevated serum concentrations of renin and aldosterone. Gitelman's is treated with only management type therapies are currently available as the Syndrome has no cure. Genetics plays a role. Treatment includes management with potassium-sparing diuretics, like amiloride or spironolatone. Among the team of 19 doctors and treatment she faces are the following: • Blood draws 2xs/week; • Neurologist for migraines and neuropathy; • Neurosurgeon for pain pump; • Cardiologist for her heart; • Pulmonologist for lungs; • Urologist for bladder issues; • Nephrologist for kidneys and electrolytes infusions; • Orthopedic Surgeon for spine; • General Surgeon for Hickman, j and g tube; • Pain management; • Primary for everything • Psychologist for anxiety, depression & PTSD; • Endocrinologist for thyroid issues; • Hemitologist for blood thinners & strokes; • Nutritionist for feeding tubes; • Gastroenterologist stomach and intestine issues; • Internal Medicine; • Infectious Disease Specialist; • Allergiests; • Gynocoligist; • Oncology possible breast cancer; • Rheumatologist deals with her rheumatoid arthritis & chemotherapy; • Genetics found her gene mutations; • Dermatologist skin issues; • Ophthalmologist loss of vision; • Ortholongologist eyes ears nose & throat guy; She takes over 100 pills a day. Steph gets tired very easily and can't lift heavy items including her 2 children. Stephanie says: "I am a warrior I am a survivor of many things I understand this terminal illness is the worst of them all and will eventually take my life but what people don’t understand is everyday is a fight for my life I can pass at ANYTIME" This disease has had a devastating effect on Steph's health. She is failing, but she still wants to speak to all of us to help raise awareness. Please give a warm welcome to Stephanie Lynn Mosier! Video Link: https://fb.watch/kd3760flsF/

Welcome Everyone! Tonight, our guest is Dr Lincy Jojan, Lead Nurse Practitioner at NorthShore University HealthSystem, PhD, & Expert on Shared Decision Making with Kidney Patients. Dr Jojan is a nurse practitioner. The primary role of nurse practitioners is to monitor patient health, provide medical care, and serve as a primary care provider. Dr Jojan's goal is to provide comprehensive healthcare to the adult population, identifying their needs and plan intervention that best meet the defined problem with the emphasis on health promotion and disease prevention. Dr Jojan began her academic career at St. John’s College Medical college and hospital Bangalore, India.where she achieved her BS in Nursing with Honors. After arriving in the United States ,she continued her education at Molloy University, Rockville Center ,New York as an Adult Health Nurse Practitioner. She is currently working as Lead Nurse Practitioner in the Department of Medicine at NorthShore University Health System where she assesses, diagnoses, interprets radiological and lab findings and prescribes treatment for acutely ill patients. She also precepts NP/PA students and new hire to the health system. She followed her dreams and achieved PhD degree on January 2023 with a GPA of 4.The highest degree required to work in an academic and research setting. Dr.Jojan is Board certified as an Adult Nurse Practitioner by the American Academy of Nurse Practitioner Certification. She is a co-author of a manuscript, Assessing Practices, Beliefs, and Attitudes about Palliative Care among People with CF, Their Caregivers, and Clinicians: Results of a Content Analysis is published in the Journal of Palliative Medicine (2020). Her experience as an intern with the Feinstein Institutes for Medical Research fostered her love for decision science related to acute patient care and studying underrepresented populations. Her Ph.D. interdisciplinary research dissertation focuses on enhancing the patient experience in shared decision-making and improving the quality of care for individuals with End Stage Renal Disease. Dr.Jojan hopes to disseminate the findings in her study through publication, podcast and through clinical Practice. Tonight, we are going to discuss her thesis and work in Shared Decision Making with Kidney Patients. Please give a warm welcome to Dr Lincy Jojan! Link to video Broadcast: https://fb.watch/jWLIfHnhxF/

Hello Everyone and Welcome! Tonight, our guest is Elaine Perlman, Living Kidney Donor, Director of Waitlist Zero, Mentor for the National Kidney Donation Organization, NKF Advocate, & Author of "Be the Parent You Wish You Had." As the Director of Waitlist Zero, she is leading campaigns to reimburse all living donors for their costs and lost wages. She founded the New York City One Kidney Club, Kidneys 4 Strangers, and Vegan Kidney Donors. She is an NKDO Kidney Donation Mentor, is on the NKF's Kidney Advocacy Committee, (KAC) & a Mentor for Plant Powered Metro New York. At her very heart, Elaine is a natural teacher, having taught for 33 years in schools ranging from the American International School of Budapest to New York City public schools. In addition to being a professor for graduate students at Teachers College, Columbia University for 6 years from 2016-2022, she was a teacher of pre-K and nearly every subject for grades 2nd-11th. As the Director of the Columbia University Peace Corps Fellows Program, she taught, supported, supervised & mentored 70 Jaffe Peace Corps Fellows in their first two years of teaching in NYC public schools. She painted 11 school murals. She also founded a college-wide monthly salon, an interdepartmental exchange of ideas, to foster dialogue & collaboration. As a school administrator, she was both a Dean and a Director of Admissions at Columbia Grammar & Preparatory School & a parent advisor for the Parents League. She taught middle school enrichment classes at the Harlem Educational Activities Fund. She was a public school nutrition specialist for 2nd-5th graders in the South Bronx, Crown Heights and Harlem for the Coalition for Healthy School Food. She completed the TC course, "Food and Nutrition For All," in addition to attaining a "Plant-Based Nutrition Certificate" from Cornell University. She earned her Bachelor of Arts in English and economics from Wesleyan University and a Master of Arts in curriculum and teaching from Teachers College, Columbia University. In addition, She has a degree in school administration from Shippensburg State University and is certified to teach nursery, kindergarten, grades 1-6, and English 7-12. Her curricula entitled "Exploring the Harlem Renaissance and the Italian Renaissance Periods Through Radio Plays" was published by Columbia University. She presented her ideas about education at the conferences Teaching in Trying Times, Reimagining Education, the Winter Roundtable as well as the Peace Corps Coverdell Directors Conference in Washington DC. Tonight, Elaine is going to speak to us about her experiences as a Living Kidney Donor, Director of Waitlist Zero and her Kidney Advocacy Experiences. Please give a warm welcome Elaine Perlman Video Replay Here! https://fb.watch/jMujr97hCl

Welcome Everybody! Tonight our guest is Bobbie Reed, Business Office Manager at George A. Reed Agency, Inc, Extraordinary Kidney Advocate, 2023 NKF Richard K. Salick Award Winner, Seeking A Kidney Transplant For Her Son, Alex Reed! Bobbie has been a master Kidney Advocate for a long period of time. She is a Member of the American Association of Kidney Patients, where because of her acting as a caretaker for her adult son, Alex, she has sought to share her knowledge and experiences with kidney disease to others, including in June of 2018, when she spoke at the National Meeting about the Ups and Downs of being a Caregiver, and in 2020, she presented a talk, Taking Time For the Caregiver. She recently received The U.S President's Achievement Award. She is a very active Kidney Advocate for the National Kidney Foundation, and a Member of the Kidney Advocacy Committee & Recently won the Richard K. Salick Award (Advocate of the Year for 2023). She has used her experience to focused on raising awareness and advocating for the Kidney Community, including helping her son Alex obtain his first Kidney Transplant from a Live Donor and now, she's in the process of helping him find a second kidney transplant. She recently attended the NKF 2023 Kidney Summit in Washington, DC. She has acted as Pennsylvania's Regional Leader for the NKF, she assisted in the development of the Big Ask, Big Give Program, helping individuals find Living Kidney Donors, and took part in the Starzi UMPC Transplant Institute Seminar in 2018. She and Candi Gagne have helped to pass important legislation in Pennsylvania. She is an Ambassador with PCORI(The Patient-Centered Outcomes Research Institute (PCORI) & has also participated in the Society To Improve Diagnosis In Medicine Research as part of a PCORI Project. Following that research, she presented/spoke at the PCORI Annual Meeting in Washington, DC regarding participating in research and what the findings were of the research I contributed to. She sat on a committee with the National Quality Forum following that and contributed to the development of measures to improve diagnosis and errors and delays in diagnosis. Bobbie acts as an Ambassador with the American Kidney Fund, and they have written an article about her fight to help Alex find a Kidney. https://www.kidneyfund.org/article/akf-ambassador-bobbie-reed-fight-help-people-kidney-disease-personal She also presented on a panel before the National Academy of Science Engineering and Medicine at a workshop they held on prescription medications. From that workshop a book was published--she was quoted in chapter 2. Currently much of her time and talent are being used in an effort to find a Kidney for her adult son Alex. Please give a warm welcome to one of the greatest Kidney Advocates in America, Bobbie Reed is with us tonight! VIDEO ON FB: https://fb.watch/jEonBj6U2e/

Welcome Everyone!  Tonight our guest is Wendy Jeffries Crowder, A PKD Patient Who had a Double Nephrectomy,  who is also seeking a Preemptive Kidney Transplant as her current Transplanted Kidney is failing after 13 years.  Wendy has had a lifetime of pain as a result of Polycystic Kidney Disease (PKD). Polycystic Kidney Disease is Polycystic kidney disease is an inherited disorder in which clusters of cysts develop in the kidneys. The cysts in polycystic kidney disease are noncancerous sacs containing water-like fluid. They can grow very large. For example, a normal kidney is the size of your fist, a PKD kidney can grow as large as a football! (Photo). Back, Side or Abdominal pain are very common in PKD patients.  https://www.mayoclinic.org/diseases-conditions/polycystic-kidney-disease/symptoms-causes/syc-20352820 The growth of cysts in your kidneys can cause a wide range of problems, including: pain in your tummy (abdomen), side or lower back. blood in your urine (haematuria) high blood pressure (hypertension). https://www.nhs.uk/conditions/autosomal-dominant-polycystic-kidney-disease-adpkd/symptoms/ To help Wendy with her pain, both damaged PKD kidneys were removed and she was forced to rely on in center hemodialysis 3xs/ week to keep her alive, making it difficult to care for her then 6 yr old son, Cody, her 18 year old son Justin & her husband Jeff. During her double nephrectomy, she also had a complete hysterectomy. Recovery was rough, but she got through it. She was then listed at John Hopkins Comprehensive Transplant Center under the care of the director Robert A. Montgomery. Wendy was transplanted on December 15, 2009 in what has been called " A Milestone in Pioneering Incompatible Donor Kidney Transplants " which just happened the 100th Paired Donation Kidney Transplant at John Hopkins! https://www.hopkinsmedicine.org/news/media/releases/johns_hopkins_reaches_milestone_in_pioneering_incompatible_donor_kidney_transplants There's also a video memoralizing these events https://www.facebook.com/1182420444/posts/pfbid0kYyhJyMUvuJBMmwodkMY4HoToBVWMnc8RgZyPD21NmVtKdY3XTuuJNsjVT54Agknl/?mibextid=Nif5oz Her husband Jeff tried to donate,  but was not a match, so under Paired Donation,  he donated a kidney to a 63 year old man in Maine & Wendy in return got her kidney from a 60 year old New Jersey Man. The kidney swap was started in NJ by a Non direct donor or altruistic donor. 6 people received kidneys that day. Unfortunately,  Wendy's transplanted has begun to fail some 13 years later and she is seeking a Preemptive Kidney Transplant,  a transplant before dialysis.  She is currently listed at VCU Health, Hume-Lee Transplant Center https://vcuhealthlivingdonor.org/ or call (804) 828-4104 Wendy has also recently become listed at John Hopkins,  located at 601 N Caroline St, Baltimore, MD 21287. The Transplant Coordinator there is Pam at 410-955-9435. You can also apply online to become a Living Donor at https://jhmi.co1.qualtrics.com/jfe/form/SV_8jqIDdm2KV3sQdv Please share this Broadcast to help this wife and mother who only wants the chance to live a full life with her family. Please give a warm welcome to Wendy Jeffries Crowder!

Hello and Welcome Everyone! Tonight our guest is Sharron Simpson Rouse.  Sharron is a FSGS Patient,  Kidney Transplant Patient, and Founder of Kindness for Kidneys International, Inc., a nonprofit organization dedicated to educating, encouraging, and empowering kidney patients and their families. In 2006, she was diagnosed with with Focal Segmental Glomerulosclerosis (FSGS). She was able to control the disease with medications until 2012 when she began hemodialysis.  She later transitioned to peritoneal dialysis. On December 2, 2013, she recieved the gift of life from her sister,  Shonte' Simpson. Sharron is a very active Kidney Advocate, and volunteers with local kidney organizations to raise awareness on kidney disease issues. She has served on the kidney walk committee for the National Kidney Foundation (National Capital Area) and has been among the top fundraisers for the past several years. She is an Ambassador for the AAKP & a Member of their Speaker's Bureau. To expand the scope of her reach, Sharron  founded Kindness for Kidneys International, Inc., a nonprofit organization dedicated to educating, encouraging, and empowering kidney patients and their families. Sharron lives in Maryland with her husband Shawn and daughter Kyla. Please give a warm welcome to Sharron Simpson Rouse! VIDEO LINK:https://www.youtube.com/live/AxBu00GjpnU?feature=share

Welcome Everyone!  Tonight our guest is Wendy Jeffries Crowder, A PKD Patient Who had a Double Nephrectomy,  who is also seeking a Preemptive Kidney Transplant as her current Transplanted Kidney is failing after 13 years.  Wendy has had a lifetime of pain as a result of Polycystic Kidney Disease (PKD). Polycystic Kidney Disease is Polycystic kidney disease is an inherited disorder in which clusters of cysts develop in the kidneys. The cysts in polycystic kidney disease are noncancerous sacs containing water-like fluid. They can grow very large. For example, a normal kidney is the size of your fist, a PKD kidney can grow as large as a football! (Photo). Back, Side or Abdominal pain are very common in PKD patients.  https://www.mayoclinic.org/diseases-conditions/polycystic-kidney-disease/symptoms-causes/syc-20352820 The growth of cysts in your kidneys can cause a wide range of problems, including: pain in your tummy (abdomen), side or lower back. blood in your urine (haematuria) high blood pressure (hypertension). https://www.nhs.uk/conditions/autosomal-dominant-polycystic-kidney-disease-adpkd/symptoms/ To help Wendy with her pain, both damaged PKD kidneys were removed and she was forced to rely on in center hemodialysis 3xs/ week to keep her alive, making it difficult to care for her then 6 yr old son, Cody, her 18 year old son Justin & her husband Jeff. During her double nephrectomy, she also had a complete hysterectomy. Recovery was rough, but she got through it. She was then listed at John Hopkins Comprehensive Transplant Center under the care of the director Robert A. Montgomery. Wendy was transplanted on December 15, 2009 in what has been called " A Milestone in Pioneering Incompatible Donor Kidney Transplants " which just happened the 100th Paired Donation Kidney Transplant at John Hopkins! https://www.hopkinsmedicine.org/news/media/releases/johns_hopkins_reaches_milestone_in_pioneering_incompatible_donor_kidney_transplants There's also a video memoralizing these events https://www.facebook.com/1182420444/posts/pfbid0kYyhJyMUvuJBMmwodkMY4HoToBVWMnc8RgZyPD21NmVtKdY3XTuuJNsjVT54Agknl/?mibextid=Nif5oz Her husband Jeff tried to donate,  but was not a match, so under Paired Donation,  he donated a kidney to a 63 year old man in Maine & Wendy in return got her kidney from a 60 year old New Jersey Man. The kidney swap was started in NJ by a Non direct donor or altruistic donor. 6 people received kidneys that day. Unfortunately,  Wendy's transplanted has begun to fail some 13 years later and she is seeking a Preemptive Kidney Transplant,  a transplant before dialysis.  She is currently listed at VCU Health, Hume-Lee Transplant Center https://vcuhealthlivingdonor.org/ or call (804) 828-4104 Wendy has also recently become listed at John Hopkins,  located at 601 N Caroline St, Baltimore, MD 21287. The Transplant Coordinator there is Pam at 410-955-9435. You can also apply online to become a Living Donor at https://jhmi.co1.qualtrics.com/jfe/form/SV_8jqIDdm2KV3sQdv Please share this Broadcast to help this wife and mother who only wants the chance to live a full life with her family. Please give a warm welcome to Wendy Jeffries Crowder!VIDEO:https://youtu.be/Ft3GE0_Rx5c

Hello Everyone and Welcome! Today our Special Guest is Alistair Dawson, A Passionate Advocate for Organ Donation,  An Ambassador for NHS Blood +Transplant in the UK, & for our purposes, A Living Kidney Donor.  His Kidney Story is an amazing Kidney Story! Ali is the Superintendent of Radiology at St Bartholomew's Hospital in London, England. He is very strong advocate for organ donation and especially kidney donation. “I want to dispel misconceptions about donation and for more people to see donors as living examples - just like me. I can do everything I did before the transplant and live my life to the full.” After studying at London South Bank , Ali was placed at King's College Hospital where he met Dr. Sonia Leonardo, who was one of his instructors in radiology. After graduating,  he had not seen her for over 5 years. In 2018, he saw a notification on Facebook that she had Polycystic Kidney Disease, was on dialysis, and needed a Kidney Transplant. At the age of 30, Ali immediately contacted her,  offered one of his kidneys and blood tests showed he was a perfect match. He gifted his Kidney in May of 2017 at Guy's Hospital in South London.  According to Ali, 5 years later, Sonia is doing very well. "Sonia is now dialysis free and it’s such a huge change in her lifestyle from having dialysis five times a day. We’re in touch everyday now and it feels like I’ve gained the sister I always wanted,” Ali has become a very active advocate for Organ and Kidney Donation! Please give a warm welcome to Alistair Dawson!

Welcome Everyone! Tonight our guest is Rachel Ruusma, Caretaker for her husband Mart Ruusma,  who had Kidney Cancer before he passed and Kidney Cancer Advocate for groups like KidneyCAN and The Judy Nicholson Kidney Cancer Foundation.  In fact this past August 8th& 9th, Rachel and I were paired together advocating to Senator Todd Young and Representatives Spartz, Mrvan and Gregg Pence from our home state of Indiana. Her husband Mart had stage 4 Renal Cell Carcinoma.  Mart was diagnosed in 2015 and was told that his encapsulated kidney would have to be removed.  It was a serious adjustment for a couple that felt Mart was very healthy. Mart actually had 2 bouts with Kidney Cancer.  After treatment originally,  Mart appeared to be clear. He met Rachel and they were married on June 17, 2017.  The second time, the Cancer returned in a metastatic form on his bones, and at the lower part of his spine.  Mart could no longer work out or lift his special needs daughter Maia. Mart did not give up. He switched to a vegan diet and did other healthy things. He underwent radiation and immuno-therapy One of the other things that Mart did to help extent his life was to become part of a clinical trial at the IU Simon Cancer Center Located in Indianapolis,  Indiana with Dr Kevin Lee. This helped to extent his life. Mart unfortunately passed on January January 30th at age 51. To honor Mart and his struggles, Rachel has continued to advocate for Kidney Cancer patients everywhere. She continues to work with and advocate for Kidney Cancer Patients and Caregivers. I was very moved when I first heard her story and  tonight I believe you will be too. Please give a warm welcome to our friend, Rachel Ruusma!

Hello Everyone and Welcome!  Our Guests tonight are Kasey, Stephen and 16 month old Cooper THE TROOPER Pfaff! Cooper has a protective older brother, Gryphon. On July 28th, 2021 Cooper Timothy Pfaff was born at the Neonatal Intensive Care Unit at the Children's Hospital of The King's Daughters in Norfolk, Virginia.  His parents,  Kasey and Stephen Cooper knew at the time that Cooper had issues with his urinary tract and his breathing.  A chest tube was placed and renal ultrasound were taken.  Prior to his birth,  Cooper's parents were told that there was a bladder obstruction outlet issue, where the posterior urethtal valves were acting as a dam, blocking the urine from leaving the body.  It was discovered that Cooper was born with End Stage Renal Disease and he had a catheter installed so he could do peritoneal dialysis. His parents were foreced to accept the reality that he would be dealing with kidney issues the rest of his life. What causes Cooper's kidneys to fail was Stage 5 Vesicoureteral Reflux (VUR), meaning that this is the most serious version of VUR that causes urine to flow back up the urinary tract as opposed to going into the bladder and out of the body, and in Cooper's case not only causing Urinary Tract Infections, but also kidney damage.  Cooper and his family have endured many surgical procedures in his short life including Posterior Urethal Valve Surgery,  a scope procedure, (where no valves were found) PD Catheter Placement, a feeding tube, a voiding trial, ultrasounds, peritoneal dialysis, growth hormone shots,  epogen shots, open reduction hip surgery,  holes in his lungs,  chest tubes, breathing tubes, Foley tube, NG tubes , PD Catheter tubes, left nephrectomy,  umbilical hernia repair and peritoneal dialysis catheter removal and replacement. In fact, Cooper had a surgery just an hour after his birth! His parents have became Kidney Parents, administering dialysis and giving shots to their son the toddler. From his date of birth of July 28th,  2021 until approximately March 1st,  2022, Cooper's family was travelling from their home to the hospital every day about 1 hour and 6 minutes one way, about  66 miles one way, over 120 miles round trip.  Costs like travel,  meals and overnight stays are not covered by insurance. Costs have also been incurred by treatments at home. For this reason, a Go Fund Me Page has been established. Recently the family received some very excellent news: "My hubs. My rock. Amazing daddy. Best person I know.  Is OFFICIALLY giving our son the chance at LIFE.  He just got approved and we got the call Nov 22 is now open for our son. I am in total shock - God is SO GOOD! The call we have been waiting on… to say I am scared, excited, grateful, nervous, etc would be an understatement because there are no words to truly express this. 💚💚💚 We are so thankful for Brian Martindale, WAVY TV 10 and WTKR News 3 for the Cooper stories. Our goal from these was not to just find a potential donor for our son but to find donors for the 640 people in need in our area alone. Since people have heard of Cooper over 50 people have signed to donate. I am asking those who signed up to donate in honor of our son. (He can receive a voucher for a future transplant!) There are SO many kids at his clinic, babies all over the nation, and adults in need. It is the most SELFLESS thing someone can do… giving life to another. 💚 If you would like to support Coopers transplant you are more than welcome to donate to our family below… every penny counts as we will be having family fly in to help Cooper and Stephen recover. It is going to be a long road and we may be spending both Thanksgiving and Christmas in the hosptial but it is WORTH IT! 😭 https://www.gofundme.com/f/cooper-the-troopers-kidney-donor-fundraiser?utm_campaign=p_lico+share-sheet&utm_medium=copy_link&utm_source=customer Please share the update and continue to pray for our family as we are about to go through some toug

Hello Everyone and Welcome! Tonight our Special Guest is Lainie Esquivel Polycystic Kidney Disease Patient and Member of the PKD Foundation's Advocacy Champions Network! Lainie lives and works in Central California with her husband, 2 year-old daughter and her dog.  She works in Education. Unfortunately,  Autosomal Dominant Polycystic Kidney Disease (ADPKD) runs in her family on her Dad's side as both her grandfather and father were diagnosed with it. Lainie herself was diagnosed with ADPKD and is currently taking Talvapton to slow the growth of her cysts. Her knowledge of PKD grew when her Mother donated a kidney to her Father, five years ago. Lainie wanted to learn  more about so she could be a better advocate for her parents during the evaluation and recovery process.  She continued to learn about PKD through het own personal experience and her desire to act as her own best advocate. At one point in time,  she submitted an article to the Voices of PKD from the PKD Foundation and did a video for the PKDF Research Summit. Links to both of these are in the comments to this Broadcast. She was able to connect with other patients and learned that advocating for the PKD Community is a rewarding way to shift your energy from yourself to help finding a cure. She has looked for ways to get more involved with the PKD Community. It has become her passion.  Lainie has said, ""Since I started getting involved about a year ago, I’ve had the pleasure of working on so many different projects and collaborating with absolutely inspiring advocates."  She is a contributing Member of the PKDF Advocacy Champions Network,  an elite group of PKD Advocates,  the National Kidney Foundation and  a Stewardship Ambassador with the PKDF, to help to give thanks for charitable donations. Her experiences have included Zoom Meetings with Members of Congress all over the country & Connecting to her own representatives. Recently,  she wrote an Op-ed on the Living Donor Protection Act that was published in the Fresno Bee Newspaper. Please give a warm welcome to Lainie Esquivel!

Welcome Everyone! Tonight, our guest is Dr Christian Hanna, a Pediatric Nephrologist on PKD in Children.   Dr Hanna is the medical director of Mayo Clinic's Pediatric Cystic Kidney Disease Clinic, which provides comprehensive care to pediatric patients with cystic kidney disease & a member of the Pediatric Nephrology and Hypertension Division at Mayo Clinic in Rochester, Minnesota. He also has a Joint Appointment in the Division of Nephrology & Hypertension, Department of Internal Medicine at Mayo clinic   His areas of expertise and interest include pediatric cystic kidney disease, including autosomal dominant polycystic kidney disease (ADPKD), autosomal recessive polycystic kidney disease (ARPKD), and other causes of cystic kidney disease in children and adolescents. He is a member of the Mayo Translational Polycystic Kidney Disease (PKD) Center & Dr. Hanna also conducts research studies and clinical trials to discover promising biomarkers for disease progression and evaluate new treatments for cystic kidney disease. He became an MD in 2006 at the University of Damascus, where he earned the Medical School Dean Excellency Award. In 2010, he completed his Residency in Pediatrics at SUNY Upstate Medical University.   In 2013, he completed both his Master of Science and Clinical Investigation and his Fellowship in pediatric nephrology at Northwestern University in Chicago.    He is Board Certified by the American Board of Pediatrics in both Pediatric Nephrology and Pediatrics.   He is a member of many professional groups including, Polycystic Kidney Disease (PKD) Foundation, The PKD Research Resource Consortium , Pediatric Research Committee at Mayo Clinic , American Society of Pediatric Nephrology (ASPN) and its Communication Committee, Pediatric Nephrology Research Consortium (PNRC), The American Society of Nephrology, International Society of Pediatric Nephrology,  International Society of Nephrology, The American Board of Pediatrics, & American Academy of Pediatrics.   He has written extensively in numerous professional journals & he is an award-winning physician, instructor, author, and researcher.   Please give a warm welcome to Dr Christian Hanna! Did you miss the Broadcast With Dr Christian Hanna on PKD in Children? Catch the Instant Replay Here! https://fb.watch/g9POBgEEni/

Hello Everyone and Welcome! Tonight our Special Guest is Kellsey Reed! Kellsey is a Registered Dietitian Nutritionist that specializes in Chronic Kidney Disease! Her main emphasis in her practice with Chronic Kidney Disease Patients is to make sure her clients & members of the Chronic Kidney Disease Community get the information and support they need to improve their kidney health and manage their CKD for life. She is very dedicated to providing CKD patients the best support possible. She used to work as a dialysis dietitian and much to her surprise discovered her dialysis patients received little or no support from their healthcare team when they were first diagnosed with CKD. It is Kellsey's sincere belief that Kidney Patients deserve to do all of the things they love to do like travel,  go out to eat at restaurants, date nights, celebrating holidays and birthdays without the stress of wondering if you are eating right for your chronic kidney disease. No one page handouts here! Kellsey believes in giving Kidney Patients all of the tools, resources and support so you can eat as a CKD patient with 100% confidence.  She is particularly known for her ability to help CKD patients learn how to handle those dietary situations that cause us so much stress! She conducts a CKD With Confidence Program that will leave you in control of your CKD diet. Kellsey created her practice to help Kidney Patients protect their kidneys no matter what stage you're in with kidney disease.   She is also very good at answering questions on the fly, so please ask during our broadcast tonight. Please give a warm welcome to Kellsey Reed!