ABCs of Disability Planning
By ABCs of Disability Planning
All views and opinions represented are my own. I am not writing on behalf of Capital Motion or Visible National Trust. Neither Capital Motion nor Visible National Trust endorse or in any other way support this content and podcast. This podcast is wholly owned and operated by me, Eric Jorgensen.
Farewell
This is the last episode of the ABCs of Disability Planning podcast. Thank you for listening.
Pediatric Genomics and the Future of Rare Disease Diagnosis
I reached out to Dr. Saquib Lakhani and his collaborator after reading about their discovery of the Jeffries-Lakhani Neurodevelopmental Syndrome (JELAN). Dr. Lakhani agreed to be my guest. This conversation is about a possible future for those born with a rare disease.
I had no idea the numbers were so high, 8 - 10% of the U.S. population has a "rare" disease. I would guess these numbers are higher. I'd like us to start testing those with Cerebral Palsy and Autism to see if some individuals may also have an undiagnosed condition.
In my perfect world, everyone will have their genes sequenced at birth. I believe gene editing will eventually help improve our healthspan, allowing us to live longer lives that we can enjoy.
Resources:
American Society of Human Genetics - https://www.ashg.org/
Yale's Pediatric Genomics Discovery Program - https://www.yalemedicine.org/departments/pediatric-genomics
Jeffries-Lakhani Neurodevelopmental Syndrome (JELANS) - https://omim.org/entry/620771
Neurodiversity-affirming support by Autistics, for Autistics
Doug Blecher founded Autism Personal Coach in 2013 in response to the near-total lack of real-life support for Autistic adults.
In 2022, Doug officially confirmed his suspicions about his neurotype. APC is now happy to confirm they are fully Autistic-led (and have been all along)!
All of their autism life coaches are either Autistic or chosen by Autistics. We choose them based on their commitment to trauma-informed and neurodiversity-affirming strategies. Their Coaches deeply understand burnout, sensory needs, and the importance of special interests. They empower our clients to take the lead, determine their goals, and choose their paths.
They know that lived experience makes Autistic people the real experts on autism. They're here to help make their goals a reality!
Connect to learn more:
Website: https://www.autismpersonalcoach.com/ IG: @autismpersonalcoach
FB: @autismpersonalcoach
For additional resources and more information about Visible you can find us here:
Web: https://visiblenationaltrust.com/
Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning
Waypoints - https://waypoints.substack.com/
Increasing independence for adolescents, young adults, and adults
Routine Success is a mobile application supporting the independence of neurodivergent young adults.
Build routines to prompt users as needed. Schedule these routines to notify the user at the appropriate times. Schedule routines to repeat on a daily, weekly, or monthly basis as needed.
The calendar view provides a quick overview of the day to come. Users can start routines early. Specify when reminders should be sent. Users can view an example of what successful completion of a particular routine looks like. Users submit the routine for review when all tasks required by the routine have been completed. Submit a picture of the finished product for feedback and approval.
Connect to learn more:
Website: https://sites.google.com/view/routine-success/home
Email: matt.gunter@routine-success.com
College Ready: https://www.college-ready.com/
For additional resources and more information about Visible you can find us here:
Web: https://visiblenationaltrust.com/
Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning
Waypoints - https://waypoints.substack.com/
Education, Expertise, and Empathy on your Medicaid Journey
ECR Planning offers professional support to families needing to access long-term care Medicaid benefits in their loved one’s state. Step 1
Meet with one of ECR's expert Benefits Advisors to determine eligibility and decide if it makes sense for your family to hire a Medicaid planner. If working with them is the right fit, you will move on to the application process. During this call, you may decide that a Benefits Consultation is more appropriate for your situation.
Step 2
You fill out a comprehensive intake questionnaire and discuss the answers with your Medicaid Specialist. You will have time to ask questions and clarify anything that doesn’t make sense. ECR's team then pulls together the necessary financial information to submit your completed application.
Step 3
ECR's team of experts and Certified Medicaid Planners™ are with you the entire time. If there is a need for other documentation as the state reviews your loved one’s application, they help you take care of that. They work with tenacity and compassion to advocate for your family until benefits are in place.
Connect to learn more:
Websites:
medicaidplanningassistance.org
Phone: 415-854-8653
Kaiser Family Foundation (KFF): https://www.kff.org/
For additional resources and more information about Visible you can find us here:
Web: https://visiblenationaltrust.com/
Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning
Waypoints - https://waypoints.substack.com/
Solving Medical Mysteries through Team Science
The Undiagnosed Diseases Network (UDN) is a research study funded by the National Institutes of Health. Its purpose is to bring together clinical and research experts from across the United States to solve the most challenging medical mysteries using advanced technologies.
Through this study, we hope to both help individual patients and families living with the burden of undiagnosed diseases and contribute to the understanding of how the human body works. Requirements for Online Application
If you decide to apply for this study, you will need to answer a series of brief questions through our application portal, the UDN Gateway (link below), related to the following:
- Contact information
- Demographic information
- Healthcare provider information (name, address, phone, fax, email)
- Brief medical history questions
- Previous evaluations
- Travel limitations
A study recommendation letter from a health care provider (for example, a specialist, primary care physician, nurse practitioner, or genetic counselor) is also necessary to submit the online application to the UDN. The letter must be written in English, signed, and on letterhead. A relative cannot write a letter. The study recommendation letter must include:
- A summary of the applicant’s medical problems
- Date when symptoms were first noticed
- For pediatric patients: prenatal and birth history
- Previous diagnoses
- History of evaluations and testing
- History of treatments and medications
- Current medications
- Family history
- Healthcare provider’s diagnostic impressions
We have prepared a sheet of information for you to share with your provider, as well as a set of example study recommendation letters.
Please provide us with a 1-page patient narrative telling us your story from your perspective. We will have received the letter from your referring provider, but the narrative may help the UDN understand your medical history directly from you. Sometimes photos help the UDN team better understand the symptoms the applicant is experiencing. If you would like to provide a narrative and/or photo, please upload it to the application.
Help Desk
Phone: 1-844-746-4836
email: UDNConnect.org
For additional resources and more information about Visible you can find us here:
Web: https://visiblenationaltrust.com/
Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning
Waypoints - https://waypoints.substack.com/
Connecting those with disabilities to the resources they need most
NavigateMD provides a one-of-a-kind service to those with disabilities, their families, and others. Their platform connects these individuals with medical providers, businesses, non-profit organizations, and other resources that meet their needs. They understand that finding the help you need can often feel like a full-time job, resulting in high-stress levels and feeling overwhelmed. NavigateMD strives to make that a problem of the past with its easy-to-use, convenient, and time-efficient platform.
For those with disabilities, their families, and others looking for resources:
- Free to use.
- Easily find all relevant resources that meet your needs.
- Gain access to resources that you may otherwise not know about.
- View medical providers, non-profit organizations, businesses, support groups, and many other resources, all in one place!
- No more searching endlessly to find the help that you need. NavigateMD finds all resources that meet your criteria quickly and efficiently!
- Enhances independence, reduces stress, promotes inclusion, and builds on community relations.
For medical providers, businesses, and non-profit organizations:
- Generates new opportunities with individuals who have been directly matched with you, based on their needs, and the services that you provide.
- Basic accounts are free. They include the services that you offer, as well as your contact information.
- Upgrade to a premium account for enhanced features such as: appearing above basic accounts in search results, gaining access to real-time data tracking for activity on your account, additional profile features, and much more.
- Premium provider accounts can be considered a business marketing expense and could be tax deductible (consult your CPA).
Connect to learn more:
Website: https://navigatemd.com/
Phone: 1-888-898-0230
Email: info@navigatemd.com
For additional resources and more information about Visible you can find us here:
Web: https://visiblenationaltrust.com/
Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning
Waypoints - https://waypoints.substack.com/
Creating innovative shared living solutions for adults with disabilities
Partners4Housing believes housing is the foundation of a good life. They are creating shared living solutions for adults with disabilities across the United States. They help you navigate the complex service agencies and secure housing for your loved one.
Their Products:
- Benefits & Housing Review
- Roommate Matching Pool
- Shared Living Development
- Consulting Services
Resources mentioned in the episode:
Family Opportunity Mortgage Loan Program
Connect to learn more:
Website: https://partners4housing.com/
Email: helpteam@partners4housing.com
Phone: 971-599-1010
Facebook: @Partners4Housing
IG: @partners4housing
For additional resources and more information about Visible you can find us here:
Web: https://visiblenationaltrust.com/
Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning
Waypoints - https://waypoints.substack.com/
Meet the new remote DSP solution from SimplyHome
SimplyHome’s remote direct support professional (rDSP) solution helps you give more people access to greater independence.
Whether you are looking for ways to expand capacity or better support your existing care teams, SimplyHome's new remote DSP solution provides real-time connectivity to real people. It’s a simple way to confidently accomplish more while providing exceptional care.
Both providers and end-users rate remote support services as providing more privacy, security, and independence than traditional services.
The SimplyHome System addresses concerns about cooking safety, falls, medication compliance, sleep patterns, wandering and elopement, aging in place, and more with a smart sensor system that alerts caregivers. SimplyHome's first interview: https://spotifyanchor-web.app.link/e/PJhz5L19cNb
Connect to learn more:
Website: https://www.simply-home.com/
Phone: (877) 684-3581
Facebook: @SimplyHome
X: @simply_home
For additional resources and more information about Visible you can find us here:
Web: https://visiblenationaltrust.com/
Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning
Waypoints - https://waypoints.substack.com/
Real Life Access - helping businesses become more accessible
Real Life Access works with organizations to increase their bottom lines by making products and services accessible to people with disabilities -- and user-friendly for everyone. They provide: - accessibility courses, training. and consulting - website audit and remediation. They can find and fix issues preventing people with disabilities from accessing your website. - Public speaking about the importance of accessibility and how it can positively affect your bottom line Current courses include: - Access for Everyone, Digital Accessibility -Access for Everyone, Physical Accessibility - Access for Everyone, Cultural Accessibility - Access for Everyone, Accessibility Basics - See our website for descriptions
https://reallifeaccess.com/courses/ Connect to learn more:
Facebook: @RealLifeAccess
LinkedIn: https://www.linkedin.com/company/real-life-access/
For additional resources and more information about Visible you can find us here:
Web: https://visiblenationaltrust.com/
Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning
Waypoints - https://waypoints.substack.com/
What if signs could talk - RightHear
RightHear provides talking signage so everyone can interpret and understand their surroundings in real-time.
The environment comes to life through audio descriptions delivered directly to a smartphone or tablet.
Helping everyone, everywhere explore, navigate, and experience the world safely and independently.
RightHear’s solution works both indoors and outdoors.
It supports any industry, sector, or size of venue, from a Safari Park to a university campus to a hotel to a local eatery, and everything in between.
It’s easy for businesses to install, easy to program, and even easier to use.
Connect to learn more:
Website: https://www.right-hear.com/
Phone: 917-732-2811 Facebook: @Right-Hear
IG: @righthearapp
Discord Community: https://discord.com/invite/d6wwRM4vNJ
For additional resources and more information about Visible you can find us here:
Web: https://visiblenationaltrust.com/
Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning
Waypoints - https://waypoints.substack.com/
Experiential Life - Embracing Yesterday's Tomorrow
The Experiential Life App brings together parents and caregivers raising neurodivergent kids through community, webinars, parent support, and downloadable resources, all contained in a convenient app on your favorite device. Webinars with professionals and neurodivergent people
Learn from the experts in real-time, or binge-watch the webinars at a time most convenient for you. Downloadable resources
Need more information that you can reference later? Download resources shared by our experts, or access our library of scripts to help you communicate with your growing list of providers to call. Community
Connect with other parents and caregivers raising neurodivergent kids. Find your community of people who get where you are, support where you are going, celebrate the wins and help you through the hard.
What's included in the Free Version
- Everything FREE to Experiential Life will be FREE to you.
- Live webinars with providers and agency representatives.
- Downloadable resources authored by Experiential Life.
- Quarterly Parent Support Group Meetings
What's included in the Plus Version
- Everything above and...
- Live webinars with neurodivergent adults.
- Downloadable scripts to help you communicate and advocate effectively.
- Monthly "Ask Me Anything" virtual meetings.
Connect to learn more:
IG: @experiential.homeschool.life FB: @experientiallife
Website: https://experiential-life.com/
Link to the episode about the State Developmental Disability Councils: https://spotifyanchor-web.app.link/e/qRWJyZ5QINb
Lifeline Support Program: https://www.lifelinesupport.org/
For additional resources and more information about Visible you can find us here:
Web: https://visiblenationaltrust.com/
Podcast (ABC's of Disability Planning) - https://anchor.fm/abcs-disability-planning
Waypoints - https://waypoints.substack.com/
Introducing Dravet Syndrome Foundation
What is Dravet Syndrome?
Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare form of intractable epilepsy that begins in infancy and proceeds with accumulating morbidity that significantly impacts individuals throughout their lifetime. It has an estimated incidence rate of 1:15,700
Enter the Dravet Syndrome Foundation (DSF).
DSF is a nonprofit organization that acts as a convener of the Dravet syndrome community. Since their founding in 2009, they have engaged and educated all of their community stakeholders – patient families, clinicians, researchers, industry partners, and others – to envision and fight for better treatments, and one day a cure for Dravet syndrome.
They believe that efforts to improve the quality of life for those affected by Dravet syndrome must include the patient's voice and experience to help guide outcomes. DSF is proud to be the largest non-governmental funder of Dravet syndrome research, worldwide.
DSF’s steadfast commitment to advancing Dravet syndrome research, as well as our community’s engagement throughout the clinical trial and drug development process, has helped enable three new treatments for the disease, with several additional clinical trials already underway or soon starting. We have made incredible progress, including the approvals by the U.S. Food and Drug Administration (FDA) of Diacomit® (stiripentol) Epidolex® (cannabidiol), and Fintepla® (fenfluramine). Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a rare form of intractable epilepsy that begins in infancy and proceeds with accumulating morbidity that significantly impacts individuals throughout their lifetime. It has an estimated incidence rate of 1:15,700.
Connect to learn more:
Website: https://dravetfoundation.org/ Facebook: @DravetSyndromeFoundation
X: @curedravet
IG: @dravetsyndromefoundation
Email: info@dravetfoundation.org
Phone: (203) 392-1955
For more information about Eric Jorgensen you can find him here:
Web: https://visiblenationaltrust.com/
Waypoints: https://waypoints.substack.com/
LinkedIn: https://www.linkedin.com/in/eric-jorgensen-visible-national-trust/
Sexuality for All Abilities
Mad Hatter Wellness creates a comprehensive sex ed and health curriculum that educates and empowers people with intellectual disabilities and their support systems.
They work with people of all abilities and specialize in health and sex education for people with intellectual and developmental disabilities. They train families, caregivers, educators, and direct support professionals.
For the past 20 years, Katie Thune has worked with children and adults, both with and without disabilities. Her mission is to help people improve their quality of life. In her 12 years working as a school teacher in Saint Paul Public Schools, her most rewarding work was helping a child join Special Olympics or teaching a student mindfulness techniques at home.
Katie founded Mad Hatter Wellness in 2013. She has her Teaching License in Health Education, and Special Education K . 12, as well as her MA in Education: Development Disabilities. She also has her Autism Spectrum Disorder Teaching Certificate.
For more information about Visible National Trust or to see more of Eric's content:
Web: https://visiblenationaltrust.com/
Waypoints: https://waypoints.substack.com/
LinkedIn: https://www.linkedin.com/in/eric-jorgensen-visible-national-trust/
Empowering Autism social skills powered by AI
‘Arrows’ was founded to empower autistic people's social skills, workplace integration, and personal independence and well-being.
Arrows' first product on the journey towards inclusion is the ‘Skill Coach’, a SaaS software for learning and practicing social skills through realistic conversations with avatars based on Generative AI technology, which is grounded in a leading international program.
The product creates a safe environment for dealing with various complex social situations. A central component of the system is a virtual social coach based on AI, which identifies errors in real-time interactions and provides the user with information and recommendations through visual cues and textual feedback to improve their skills.
Learn more:
Website: https://www.ar-rows.com/
LinkedIn: https://www.linkedin.com/company/arrows-communication-assistive-technology/
For more information about Visible National Trust or to see more of Eric's content:
Web: https://visiblenationaltrust.com/
Waypoints: https://waypoints.substack.com/
LinkedIn: https://www.linkedin.com/in/eric-jorgensen-visible-national-trust/
As an Amazon Associate, I earn commissions from qualifying purchases.
College Autism Network - Advocacy | Research | Training
The College Autism Network links varied stakeholders engaged in evidence-guided efforts to improve access, experiences, and outcomes for postsecondary students with autism. ADVOCACY: CAN empowers college students with autism by amplifying their voices within the academic community and providing free access to materials to facilitate their successful transition into, through, and out of college.
RESEARCH: They facilitate research that uses qualitative and quantitative methods to examine the systemic, institutional, and personal conditions that shape college access, experiences, and outcomes for students on the autism spectrum. TRAINING: The College Autism Network conducts professional development workshops and distributes training materials to administrators, researchers, students, parents, and instructors
Connect to Learn More:
Website: https://collegeautismnetwork.org/ Facebook: https://www.facebook.com/CollegeAutism
X: @CollegeAutismIG: @collegeautismnetwork
For more information about Eric Jorgensen you can find him here:
Web: https://visiblenationaltrust.com/
Waypoints: https://waypoints.substack.com/
LinkedIn: https://www.linkedin.com/in/eric-jorgensen-visible-national-trust/
As an Amazon Associate, I earn commissions from qualifying purchases.
Get paid to be a Family Care Giver
Givers hires, supports, and pays family caregivers.
Are you caring for a loved one? See if you qualify to get hired, supported, and paid by Givers in 60 seconds.
State-by-State Compensation Guide:
https://www.joingivers.com/how-to-get-paid-caregiver
Connect to learn more:
Website: https://www.joingivers.com/
Facebook: https://www.facebook.com/joingivers/
X: @joingivers
IG: @joingivers
LinkedIn: https://www.linkedin.com/company/joingivers/
For more information about Eric Jorgensen you can find him here:
Web: https://visiblenationaltrust.com/
Waypoints: https://waypoints.substack.com/
LinkedIn: https://www.linkedin.com/in/eric-jorgensen-visible-national-trust/
As an Amazon Associate, I earn commissions from qualifying purchases.
Reducing Discrimination against Individuals with Mental Impairments: Influence of Section 503
Christy Nittrouer is a tenure-track, assistant professor in the management area at the Rawls College of Business at Texas Tech University. She earned her Ph.D. in Industrial/Organizational Psychology from Rice University.
She has raised over $1 million in grant dollars to support her research on allyship and the experiences of minoritized employees in the workplace from funding sources such as the National Science Foundation (NSF) and Texas State agencies.
Her work has received a variety of awards including the 2023 Texas Tech University Alumni Association’s New Faculty Award, the 2020 Ralph Alexander Best Dissertation Award from the Academy of Management, the 2019 Outtz Grant for Student Research in Diversity, and the 2019 Graduate Student Scholarship by the Society of Industrial and Organizational Psychology (SIOP) Foundation, and a 2019 Vaughn Fellowship awarded annually by Rice University.
She has 28 published peer-reviewed papers and book chapters (at outlets including the Proceedings of the National Academy of Sciences (PNAS), Personnel Psychology, Journal of Vocational Behavior, Journal of Business and Psychology, Journal of Organizational Behavior, and Harvard Business Review).
She has given over 60 presentations on the impact of diversity in the workplace, with a special focus on selection. Her work has been featured in The Atlantic, National Public Radio (NPR), The New York Times, ABC News, and the Houston Chronicle.
She was nominated for the 2023 Rawls Excellence in Undergraduate Teaching award and received Rice University’s 2020 graduate teaching award for her outstanding work teaching undergraduates. She has consulted for companies and served on panels for NASA, as well as LyondellBasell (global legal team), Exxon Mobil (affinity group), Baylor College of Medicine (medical students), Proctor & Gamble (global talent assessment team), and non-profits (selection).
Connect with Christy:
https://www.linkedin.com/in/christy-nittrouer/
Email: cnittrou@ttu.edu
For more information about Eric Jorgensen you can find him here:
Web: https://visiblenationaltrust.com/
Waypoints: https://waypoints.substack.com/
LinkedIn: https://www.linkedin.com/in/eric-jorgensen-visible-national-trust/
As an Amazon Associate, I earn commissions from qualifying purchases.
The Autistic People of Color Fund - At the intersections of disability justice, neurodiversity, and racial justice
The Autistic People of Color Fund - At the intersections of disability justice, neurodiversity, and racial justice.
The Fund practices redistributive justice and mutual aid by returning and sharing money directly to and with autistic people of color. They provide microgrants to Black, Brown, Native, Asian, and mixed-race people in the autistic community for survival, organizing, leisure, and pleasure.
They are committed to the principles of Disability Justice, including leadership by those most impacted, intersectionality, anti-capitalist politics, cross-movement solidarity, interdependence, collective access, and collective liberation. Their work is grounded in the commitment to ending extractive economies and building and sustaining generative economies.
Connect to learn more:
Website: https://autismandrace.com/
Email: communityfund@autismandrace.com X: #autisticpoc
For more information about Eric Jorgensen you can find him here:
Web: https://visiblenationaltrust.com/
Waypoints: https://waypoints.substack.com/
LinkedIn: https://www.linkedin.com/in/eric-jorgensen-visible-national-trust/
As an Amazon Associate, I earn commissions from qualifying purchases.
Get relief from Hospital Bills with Dollar For
Get Relief from Hospital Bills
Most hospitals offer discounts or bill forgiveness based on income. On average, a family of 4 earning less than $100,000 a year will qualify. Dollar For can help you apply — for free.
Financial Assistance: Hospitals’ Best-Kept Secret
Hospital financial assistance is sometimes called “charity care.” By law, nonprofit hospitals must offer programs that forgive bills. Many for-profit hospitals also offer help. When patients are approved for charity care, their bills are reduced or eliminated. Connect to learn more:
Website: https://dollarfor.org/
For more information about Eric Jorgensen you can find him here:
Web: https://visiblenationaltrust.com/
Waypoints: https://waypoints.substack.com/
LinkedIn: https://www.linkedin.com/in/eric-jorgensen-visible-national-trust/
As an Amazon Associate, I earn commissions from qualifying purchases.
Job development, life skills and fitness for ALL abilities
Job development, life skills, and fitness for ALL abilities!
Kibu offers fun, bite-sized classes in fitness, life skills, community engagement, and job development in an inclusive environment.
They offer over 300 pre-recorded video lessons on a variety of topics. Their lessons are designed to be accessible to everyone. They add 2 to 5 new videos every week!
Kibu has expanded to include tools for disability providers, including data management, note-taking, and attendance. Their full suite of admin tooling and analytics helps providers spend more time doing what they're best at and less time dealing with paperwork.
Connect to learn more:
Email: hello@kibuhq.com
Phone: 937-791-6219
IG: @kibuhq
LinkedIn: https://www.linkedin.com/company/kibuhq/
Facebook: @kibuhq
For more information about Eric Jorgensen you can find him here:
Web: https://visiblenationaltrust.com/
Waypoints: https://waypoints.substack.com/
LinkedIn: https://www.linkedin.com/in/eric-jorgensen-visible-national-trust/
As an Amazon Associate, I earn commissions from qualifying purchases.
Mapping the Future with Indoor Navigation
Goodmaps - Mapping the Future with Indoor Navigation. Empowering everyone with the freedom and autonomy to discover the world around them.
Creating Smarter Spaces Through Digital Mapping
Step 1: Scan your venue
Step 2: A 3D Map of the Entire Space
Step 3: Edit Your Map
Step 4: Find Your Way GoodMaps is a global indoor mapping, positioning, and accessible navigation company that aims to make the world’s indoor spaces more inclusive, interactive, and joyful for everyone.
Their innovative, patented, indoor positioning technology and accessible app guide individuals – whether blind or low vision, deaf, mobility impaired, or directionally challenged – step by step from the front door to the indoor destination of their choice.
From rail stations to airports, museums to sports complexes, university campuses to shopping centers, GoodMaps is helping more people find their way with ease and independence.
For more information:
Facebook: https://www.facebook.com/GoodMapsForAll
Website: www.goodmaps.com
For more information about Eric Jorgensen you can find him here:
Web: https://visiblenationaltrust.com/
Waypoints: https://waypoints.substack.com/
LinkedIn: https://www.linkedin.com/in/eric-jorgensen-visible-national-trust/
Leading the way to an inclusive workforce
The CEO Commission for Disability Employment is leading the way to an inclusive workforce.
It was founded by Voya Financial, the Society for Human Resource Management (SHRM), and the National Down Syndrome Society (NDSS), to advance disability-inclusive employment by inspiring and engaging business leaders to drive change through policy, practice, and culture.
The CEO Commission is designed to increase opportunities for people with disabilities to obtain and maintain employment. We aim to accomplish this by building a diverse coalition of private-sector organizations, including for-profit and non-profit businesses of different sizes.
Through effective collaboration and research, the CEO Commission will promote best practices across the entire business community to decrease barriers individuals with disabilities face in accessing employment.
Their Vision is a future in which federal, state, and local policies foster disability-inclusive employment; company practices ensure individuals with disabilities can thrive in inclusive settings, and workplace cultures welcome and value the contributions of each employee.
Companies mentioned:
National Down Syndrome Society (NDSS)
Society for Human Resource Management (SHRM)
Connect to learn more:
Website: https://ceocommission.org/
Company LinkedIn: https://www.linkedin.com/company/ceo-commission/
Rob Snow's LinkedIn: https://www.linkedin.com/in/rob-snow-5bbb57166/
Email Rob: rsnow@ceocommission.org
For more information about Eric Jorgensen you can find him here:
Web: https://visiblenationaltrust.com/
Waypoints: https://waypoints.substack.com/
LinkedIn: https://www.linkedin.com/in/eric-jorgensen-visible-national-trust/
As an Amazon Associate, I earn commissions from qualifying purchases.
Breakthrough Therapies for Mental Health in the Workplace
What Is KAT?
Ketamine-Assisted Therapy (KAT) refers to the use of ketamine in conjunction with facilitated therapy. KAT is a proven treatment for many mental health disorders, including major depression, PTSD, generalized anxiety, and substance abuse.
Ketamine itself is a dissociative medicine that quiets sensory input and can give people a temporary change in their mental perspective. Its original use was as a surgical anesthetic, for which it received FDA approval in 1970. Since then it’s been used worldwide as an anesthetic, has an outstanding safety record, and is on the World Health Organization’s list of essential medicines.
Enthea was founded by a team of industry experts who share a vision of access to safe and affordable psychedelic healthcare. Together, they are focused on effecting change to offer people the treatment they deserve. Connect to learn more:
Website: https://www.enthea.com/
LinkedIn: https://www.linkedin.com/company/entheahealth/
As an Amazon Associate, I earn commissions from qualifying purchases.
For more information about Eric Jorgensen you can find him here:
Web: https://visiblenationaltrust.com/
Waypoints: https://waypoints.substack.com/
LinkedIn: https://www.linkedin.com/in/eric-jorgensen-visible-national-trust/
Developing novel tools for Autism screening
Dr. Geraldine Dawson is the William Cleland Distinguished Professor of Psychiatry and Behavioral Sciences at Duke University, where she is a Professor of Pediatrics Psychology & Neuroscience.
Dr. Dawson also is the Founding Director of the Duke Center for Autism and Brain Development, an NIH Autism Center of Excellence, which is an interdisciplinary research program and clinic, aimed to improve the lives of those diagnosed with autism through research, education, clinical services, and policy.
Dr. Dawson received a Ph.D. in Developmental and Child Clinical Psychology from the University of Washington and completed a clinical internship at the UCLA Neuropsychiatric Institute.
Dr. Dawson's work focuses on improving methods for early detection and intervention for autism, understanding brain function in autism, and validation of autism EEG biomarkers. She co-developed the Early Start Denver Model, an empirically validated early autism intervention that is used worldwide. She collaborates with colleagues in the departments of computer science and engineering, pediatrics, and biostatistics to develop novel digital health approaches to autism screening and outcome monitoring.
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For more information about Eric Jorgensen you can find him here:
Web: https://visiblenationaltrust.com/
Waypoints: https://waypoints.substack.com/
LinkedIn: https://www.linkedin.com/in/eric-jorgensen-visible-national-trust/
Global Genes - Allies in Rare Diseases
You're not alone! When you’re here, you’re part of a globally connected community committed to eliminating the challenges of rare diseases. Global Genes is committed to providing information, resources, and connections to all communities affected by rare diseases.
Global Genes is a 501(c)(3) non-profit organization dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. The RARE Drug Development Symposium, hosted by Global Genes and the Orphan Disease Center of the University of Pennsylvania, equips advocates with the knowledge, skills, and connections they need to advance therapy development for their communities. This year’s theme is Innovative Ideas from Next Generation Change-Makers.
Rare Drug Development Symposium (4/29/2024 - 5/1/2024) - https://globalgenes.org/event/rare-disease-drug-development/
Rarely Told Stories - https://globalgenes.org/resources/#/types/story
Rarecast (Podcast) - https://www.levinemediagroup.com/rarecast/
Disorder: Rare Disease Film Festival - https://www.rarediseasefilmfestival.com/
EveryLife Foundation for Rare Diseases - https://everylifefoundation.org/
"The Mighty" (movie) - https://www.imdb.com/title/tt0119670/
Connect to learn more:
Web: https://globalgenes.org/ Phone: (+1) 949-248-RARE (7273)
FB: @GlobalGenes
X: @GlobalGenes
IG: @globalgenes
Episode Transcript: https://docs.google.com/document/d/1tsUg4k-B1GpEfFfk9JCdQtTE9MKTkYCD/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true
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Web: https://truenorthdisabilityplanning.com/
Waypoints - https://waypoints.substack.com/
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Fighting for disability rights and disability justice in 14 states - New Disabled South
New Disabled South, and their advocacy arm, New Disabled South Rising, are fighting for disability rights and justice in 14 states. Those states are Alabama, Arkansas, Florida, Georgia, Kentucky, Louisiana, Mississippi, North Carolina, Oklahoma, South Carolina, Tennessee, Texas, Virginia, and West Virginia.
The 10 Principles of Disability Justice
Intersectionality: Many disabled people experience other forms of oppression in addition to ableism. The experience of disability is shaped by race, gender, class, and more.
Leadership of the most impacted: The most oppressed lead our movement because they know the most about how systems of oppression work.
Anti-capitalist politic: We don’t conform to capitalist systems that profit from us. Human worth does not rely on how much a person can produce.
Commitment to cross-movement organizing: We work with other movements to shift views on ableism and disability.
Recognizing wholeness: We have value beyond capitalist standards of work. Disabled people are whole people.
Sustainability: We work at a pace that promotes ongoing justice and liberation and values the teachings of our lives and bodies.
Commitment to cross-disability solidarity: We join together to accomplish more. Isolation harms us all.
Interdependence: We help each other achieve liberation for all living systems and the land. Government solutions control us more.
Collective access: We share the responsibility to create community with each other by making access a way of life for all.
Collective liberation: No one is left behind; we need each other to achieve freedom.
Connect to learn more:
Website: New Disabled South Rising
IG: @newdisabledsouthrising
X: @DisSouthRising FB: @NewDisabledSouth Email: info@newdisabledsouth.org
Episode Transcript: https://docs.google.com/document/d/13NvbTprASqRgMqZIL0nluo9kWO9iUA3O/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true
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Web: https://truenorthdisabilityplanning.com/
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National Council on Severe Autism
Jill Escher is the President of the National Council on Severe Autism. She is an autism research philanthropist (Escher Fund for Autism), a real estate investor who provides low-income housing for adults with developmental disabilities, a former lawyer, and a mother of two children with nonverbal autism. As an advocate, she is past president of the board for the Autism Society San Francisco Bay Area and, as a promoter of innovative research has served on the governing council of the Environmental Mutagenesis and Genomics Society. The National Council on Severe Autism is pursuing recognition, policy, and solutions for the surging population of individuals, families, and caregivers affected by severe forms of autism and related disorders.
Autism Confidential Podcast: https://www.autismconfidential.org/
"Chasing the Intact Mind" by Amy Lutz: https://amzn.to/48oZkup
"The Autism Surge: Lies, Conspiracies, and My Own Kids" by Jill Escher: https://www.thefp.com/p/the-autism-surge-lies-conspiracies
Episode Transcript: https://docs.google.com/document/d/1d9XyYakluHBMAUqFbNUCVH4gPgDql5Ij/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true
Connect to learn more:
Website: https://www.ncsautism.org/
FB: @NationalCouncilonSevereAutism
X: @NCSAutismOrg
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Web: https://truenorthdisabilityplanning.com/
Waypoints - https://waypoints.substack.com/
Hospice Navigation: The Compassionate Guide to End-of-Life Care
Hospice Navigation: The Compassionate Guide to End-of-Life Care
Death is scary. No one wants to talk about it, and most of us aren't ready when it comes. It feels like the medical profession has made it their mission to delay the end of life, no matter the cost of pain and suffering. You have the right to go out on your terms, by choosing not to see further aggressive treatments. Hospice is an underutilized resource paid for by insurance and available in all 50 states and DC.
When dealing with a serious illness, having access to the right resources and guidance can make all the difference. Hospice Navigation Services is here to offer just that – a compassionate hand to hold and a reliable compass to help navigate this challenging journey.
Who can benefit from a Hospice Navigation Services session? If you're:
- dealing with a serious illness
- a caregiver who needs information about hospice care for someone you love
- needing education about end-of-life care
- a patient or caregiver with questions about your current hospice care
- needing to discuss advance care planning
Here's what Hospice Navigation Services has to offer:
- private, personalized guidance
- expert Hospice Navigators
- easy online booking of your Hospice Navigation Session on The Heart of Hospice website
- a choice of a FREE 30-minute Navigation Session or a 60-minute Navigation Session
- a safe space for questions about end-of-life care
- comprehensive information about how to get the best out of your hospice care
"When Breath Becomes Air": https://amzn.to/48piKzb
Helen's interview on the Happy Healthy Caregiver Podcast (Ep. 99): https://happyhealthycaregiver.com/podcast/helen-bauer/
Connect to learn more:
Website: https://www.theheartofhospice.com/services
FB: @TheHeartofHospice
IG: @TheHeartofHospice
X: @TheHeartHospice
Episode Transcript: https://drive.google.com/file/d/1freQMIOXYV90KiI8u16JmgDqSmfU3eWN/view?usp=sharing
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Meet Effie Parks, Host of the "Once Upon A Gene - Rare Disease Podcast"
Once Upon A Gene is a Podcast for families living with rare diseases. There are personal stories and resources shared to help connect us with our community. Although I only linked Apple podcast below, Once Upon A Gene is available on any player of your choice and has a YouTube channel.
Effie Parks, originally from beautiful Montana, has become a guiding light in the rare disease community following her son Ford's diagnosis with CTNNB1 syndrome. Settling in Washington, she transformed her family's journey into a crusade for advocacy, support, and empowerment for families navigating similar challenges.
As the host of the "Once Upon a Gene" podcast, Effie has been recognized for several awards including WEGO Health and Podcast Magazine for her impactful storytelling and resource-sharing in the realm of rare genetic disorders.
Effie extends her advocacy through speaking engagements at medical and patient advocacy conferences, sharing her experiences and insights from her work to bridge the gap between all rare disease stakeholders.
Her skill in community engagement, developed through her advocacy, empowers her efforts in building a supportive network and raising awareness.
With a mission to leave the world better than she found it, Effie is dedicated to fostering a more informed and empathetic environment for those impacted by rare diseases.
Her work embodies resilience and compassion, inspiring and uniting the rare disease community. Effie’s journey is not just about sharing stories, it's about driving change and creating a lasting impact in the world of rare genetic conditions.
Two Disabled Dudes: https://twodisableddudes.com/
"Chasing My Cure: A Doctor's Race to Turn Hope Into Action; A Memoir" - Dr. David Fajgenbaum: https://amzn.to/3OpBzLg
"The Ataxian" documentary (Amazon Prime): https://amzn.to/4bg53oS
Connect to Learn More:
Website: https://effieparks.com/
Email: hello@onceuponagene.com
FB: @OnceUponAGene
IG: @onceuponagene.podcast
Apple Podcast: https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347
Episode Transcript: https://docs.google.com/document/d/1Q6gNJc9HGU7HRMdEA8I2R3G-fHJI8qdT/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true
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Web: https://truenorthdisabilityplanning.com/
Waypoints - https://waypoints.substack.com/
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X (Twitter): @NeedsNavigator
The Lucas Project: Recognition & Respite for Special Needs Families
The Lucas Project provides recognition, respite, and resources to family caregivers of those with special needs.
16.3 million People in the U.S. are caregivers to a child with special needs.
That number is staggering and also a wake-up call. Most of us know of someone who is caring for a child with special needs and if you don’t personally know of someone, you can be assured that they are in your neighborhood; probably hiding behind closed doors isolated and exhausted.
Caregivers often project the perception that “everything is okay,” when in fact, it probably is not okay and they would so appreciate having someone reach out and lend a hand. It is our job as a society to surround these caregivers and support them through the difficult times, because a child is only as healthy as the caregiver, and society is only as healthy as the families within it. At The Lucas Project, we care for the caregivers.
Get Jess Ronne's books from Amazon: https://amzn.to/4b6jQCF
Lisa Whittle's books from Amazon: https://amzn.to/3S8EbhQ
Atomic Habits: https://amzn.to/48OhrdY
Connect to learn more:
Website: https://thelucasproject.org/
Email: info@thelucasproject.org
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Embracing Another Normal: Resilience Stories and Strategies for Raising Children with Disabilities
Embracing Another Normal integrates the deep expertise of Kris Burbank, thought leader and coach on parenting children with disabilities, and the wisdom and insights of Dr. Linda Hoopes, award-winning author and researcher on personal resilience. It articulates six fundamental challenges of raising children with disabilities, shares stories of how parents and families have navigated these challenges, and provides a framework for connecting successful strategies to the key building blocks of resilience.
Connect to learn more:
Link to "Embracing Another Normal" (Amazon): https://amzn.to/3Okf6PP
Kris Burbank's Substack "Another Normal": https://anothernormal.substack.com?utm_source=navbar&utm_medium=web&r=f674k
Linda Hoopes Substack "Prosilience": https://prosilience.substack.com?utm_source=navbar&utm_medium=web&r=f674k
Kris' Website: https://www.krisburbank.com/
Prosilience Website: https://prosilience.com/
"Welcome to Holland": https://www.emilyperlkingsley.com/welcome-to-holland
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Introducing the NR2F1 Foundation
NR2F1 Foundation's mission is to support those impacted by an NR2F1 mutation, aka Bosch-Boonstra-Schaaf optic atrophy syndrome through education, advocacy, and research.
BBSOAS, also known as Bosch-Boonstra-Schaaf Optic Atrophy Syndrome, is a rare neurological disorder caused by a disruption in the NR2F1 gene. BBSOAS is characterized by a wide array of clinical features, but the most common are vision impairment caused by optic atrophy, developmental delay, and intellectual disability. There are currently a few hundred known cases of BBSOAS worldwide with diagnoses rapidly increasing every month.
The phenotypic spectrum of Bosch-Boonstra-Schaaf optic atrophy syndrome (BBSOAS) is broad and variable, but the most well-established characteristics include developmental delay/intellectual disability and visual impairment (including optic nerve atrophy, optic nerve hypoplasia, and cortical visual impairment). Other common features include hypotonia, oromotor dysfunction, and mild and inconsistent dysmorphic facial features. Morphological changes in brain structures including thinning of the corpus callosum, and autism spectrum disorder are also considered common. Individuals are at an elevated risk of seizures, including infantile spasms.
Genotype-phenotype correlations have been proposed, with individuals with mutations in the DBD typically showing a more severe phenotype, and individuals with whole-gene deletions and truncating mutations tending to have moderate to mild symptoms. Individuals with point mutations outside of the DBD most often manifest the mildest phenotype.
BBSOAS is considered a static encephalopathy and has not been shown to be progressive/degenerative. There is no progression of the eye phenotype known, including no known progression of optic atrophy.
Connect to learn more:
Email: info@nr2f1.org
FB: @NR2F1 Foundation
IG: @nr2f1foundation
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Web: https://truenorthdisabilityplanning.com/
Waypoints - https://waypoints.substack.com/
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JelikaLite - Precision Autism Through Light
JelikaLite - Precision Autism Through Light
ASD is a lifelong developmental disorder. The rates continue to rise, the cause remains unknown, and current solutions are inadequate. Autistic individuals frequently have difficulties with communication, social interactions, repetitive behavior, and focus, impacting their ability to integrate into society.
JelikaLite believes that all children can lead fulfilling and productive lives. That is why they are developing Cognilum, an innovative solution to enhance the child's communication skills while reducing a child's troublesome autism symptoms, enabling them to improve their lives.
Cognilum is a therapeutic wearable device that provides non-invasive brain stimulation with near-infrared light, sensors, and a machine-learning personalization platform.
Connect to learn more:
Website: https://jelikalite.com/
Sign up for early access: https://jelikalite-23877686.hubspotpagebuilder.com/jelikalite-early-access-campaign
Email: info@jelikalite.com
Floreo: https://floreovr.com/
GoMo Health: https://gomohealth.com/
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Web: https://truenorthdisabilityplanning.com/
Waypoints - https://waypoints.substack.com/
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Financial Services for the World’s Largest Minority - Visible National Trust
Financial Services for the World’s Largest Minority - Visible National Trust.
Visible National Trust is the first national, universally accessible disability financial planning and wealth management solution for special needs families.
For families, Visible National Trust is a leap forward in disability financial services, providing intergenerational stewardship of funds while safeguarding access to important benefits, and including the services of global and national financial institutions trusted by millions of people.
BlackRock provides ETF model portfolios to the Trust and Huntington National Bank is the Trust’s custodian and sub-accountant. Visible’s complete solution includes all trust services, investment, custody, accounting and tax services, payments, and continuous access to account information. Visible’s asset-based fees are lower than prevailing fees for alternative services and include many benefits not available elsewhere.
For financial advisors, Visible National Trust is a complete packaged solution for disability financial planning integral to implementing comprehensive wealth management and retirement plans for families that include a loved one with a disability. Visible seamlessly connects families and financial advisors.
FMDT Pooled Trust interview: https://spotifyanchor-web.app.link/e/sIlTDdkjBFb
Intro to Special Needs Trusts: https://spotifyanchor-web.app.link/e/7OYmDE3jBFb
Estate Planning, Beyond the Basics: https://spotifyanchor-web.app.link/e/zTvINqikBFb
Connect to learn more:
Website: https://visiblenationaltrust.com/ Email: inquire@visiblenationaltrust.com
Phone: 800-760-4234
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Web: https://truenorthdisabilityplanning.com/
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Supporting Independence and Improving Quality of Life - MapHabit
Supporting Independence and Improving Quality of Life - MapHabit.
Habit-building tools are important for everyone to keep routines on track.
MapHabit's unique, science-based system helps make each day safer, more productive, and less stressful for individuals and their caregivers. Their approach leverages the power of combining assistive technology with behavior learning.
Their innovative system organizes habits, routines, and tasks into visual maps. They are interactive and engaging step-by-step how-to guides that help members complete a daily activity independently, or with help from a support partner or a caregiver.
These visual maps make it easier to get tasks done each day.
Waypoints Technology article: https://waypoints.substack.com/p/technology-what-can-it-do-for-you Connect to learn more:
Website: https://www.maphabit.com/
Phone: 1-855-515-4332
FB: @MapHabit
IG: @maphabitatl
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Discover your potential as a family through live-in child care
Discover your potential as a family through live-in child care. Apex Social Group specializes in live-in care for families with special needs. Their caregivers have backgrounds in healthcare, therapy, and education.
Apex Care Professionals are dedicated to child development and providing specialized support to families with special needs. With backgrounds in therapeutic, health, or educational fields, their candidates are dedicated to understanding and supporting the developmental goals of each child they care for.
They specialize in providing exceptional care to families with special needs, including autism, developmental delays, ADHD, cerebral palsy, and more. They source our extraordinary candidates from prestigious European and American universities, vocational training schools, hospitals, and globally recognized organizations. Learn more:
Website: https://apex-social.com/
Email: info@apex-social.com
FB: @ApexSocialGroup
Meet their candidates: https://apex-social.com/meet-our-candidates/
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Web: https://truenorthdisabilityplanning.com/
Waypoints - https://waypoints.substack.com/
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It takes a (Meerkat) village to raise a child with special needs.
It takes a village to raise a child with special needs. Meerkat Village connects you with your child’s providers and supporters in one place. Parents of children with special needs bear the daily struggle of keeping all their child's caregivers on the same page.
It requires constant effort to ensure their child can make progress and thrive. Meerkat Village provides a forum for group collaboration and communication among the entire village of adults supporting the child. From therapists, teachers, and specialists to grandparents, neighbors, and friends, everyone is welcome in Meerkat Village.
They empower, connect, and create hope for parents and their children’s providers by providing a simple way to track progress and develop strategies.
"Superheroes on the Spectrum" (book)
Connect to learn more:
Website: https://meerkatvillage.com/
FB: @MeerkatVillage
IG: @meerkatvillage
Link to Transcript: https://docs.google.com/document/d/1XuW2kOFR-mI-G6oTvUqiQxn_-dGadkWB/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true
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Web: https://truenorthdisabilityplanning.com/
Waypoints - https://waypoints.substack.com/
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When something feels off, Buoy it
When something feels off, Buoy it! Buoy helps people figure out health issues and find the right care.
Their A.I. asks questions and helps narrow down what is going on based on your answers. No more guessing and filling in the blanks. It's like talking to your friend who happens to be a doctor. Editorial Standards
They were founded based on the idea that searching for health information online shouldn't be scary and misleading. To combat this, their technology and all of their content are:
- Reviewed and edited by experts - doctors, clinicians, nurses, and therapists
- Created to be clear and actionable, not vague and alarmist
- And backed by clinical research
Learn more:
Website: https://www.buoyhealth.com/
Email: contact@buoyhealth.com
FB: @BuoyHealth
X: @buoyhealth
IG: @buoyhealth
Episode Transcript: https://docs.google.com/document/d/15tQLcHmm2uLZl2BvIHtqZRyU7RicKTCt/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true
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Stanford Neurodiversity Project
Dr. Lawrence Fung is an Assistant Professor (University Medical Line) at the Major Laboratories and Clinical Translational Neurosciences Incubator in the Department of Psychiatry and Behavioral Sciences at Stanford University. He received his BS with honors from the University of California at Berkeley, MS in Engineering from Johns Hopkins University, PhD from Cornell University, and MD from George Washington University. Dr. Fung completed his general psychiatry residency, child & adolescent psychiatry fellowship, and postdoctoral research fellowship at Stanford University.
Dr. Fung is a researcher and clinician specializing in autism and the father of a neurodiverse teenager on the autism spectrum. He serves as the principal investigator of studies investigating the neurobiology of autism by state-of-the-art molecular neuroimaging and bioanalytical technologies.
He studies novel pharmacologic interventions, including pregnenolone. Dr. Fung is the director of the Stanford Neurodiversity Project, which strives to uncover the strengths of neurodiverse individuals and utilize their talents to increase innovation and productivity of society as a whole. Dr. Fung directs the Adult Neurodevelopment Clinic, which specializes in assessing and treating adults on the autism spectrum.
Neurodiversity at Work: https://med.stanford.edu/neurodiversity/NaW.html
Imitation Game (movie): https://www.imdb.com/title/tt2084970/ Connect to learn more
Stanford Neurodiversity Project: https://med.stanford.edu/neurodiversity.html
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Everyone has the ability to #BeImpactful
Everyone has the ability to #BeImpactful - Philip C. Clark. Be Impactful, create a plan that enables your child with special needs to live a great life.
ENABLE Special Needs Planning, LLC, believes that everyone has the ability to be impactful in the lives of others. This ability is what gives each of us a sense of purpose in life.
"80% of families do not have a comprehensive plan for their family, or their child with special needs". Phillip Clark founded ENABLE Special Needs Planning thanks to the positive impact of his younger sister, Sarah, who has Down syndrome.
Episode Transcript: https://docs.google.com/document/d/1c1lbsmgL09pZZL42GuUwUS21JwJgGgiC/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true
Learn more:
Website: https://enablesnp.com/
Online Community (private FB Group): https://enablesnp.com/fb-group-landing-page/
Email: info@ENABLEsnp.com
FB: @EnableSpecialNeedsPlanning
X: @ENABLEsnp
IG: @enablesnp
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Overconnected but Underserved!
The Connected Parent has a comprehensive database and easy-to-use filters to help you connect with the local & online businesses you need, reviewed by families like yours.
They are a comprehensive, one-stop hub of resources local to you and reviews for those hard-to-find services your family needs. With their easy-to-use filters, narrowing your search to find therapists, recreational activities, advocates, and other resources in your area has never been easier.
The best part? They're building out a community of reviews that gives you on-demand access to insights & recommendations that feel like they came straight from a personal friend.
Episode Transcript: https://docs.google.com/document/d/1T8g6BhMypV7wmrjDrLHxLNLHC-557nrI/edit?usp=drive_link&ouid=117716030289987185197&rtpof=true&sd=true
Connect to learn more:
Website: https://www.theconnectedparent.net/
Email: support@theconnectedparent.net
Phone: 877-313-6349
IG: @theconnectedparentsite
FB: @TheConnectedParent
Accessible Adventures: https://accessibleadventures.net/index.html#/
"The Body Keeps the Score" - https://amzn.to/47ewwVo
"Together is Better", Simon Sinek - https://amzn.to/3QIFVgS Dan Palloto's TED Talk about Charity - https://www.ted.com/talks/dan_pallotta_the_way_we_think_about_charity_is_dead_wrong?language=en
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Improving Emotional Connections by Bridging Emotional Communication Across People and Screens
Improving Emotional Connections by Bridging Emotional Communication Across People and Screens
Valence analyzes tonal data to classify emotions. Vibes for Apple Watch is live. Vibes uses haptic feedback so you can literally feel the vibes of the room as a vibration on your wrist. Feel unique taps for each emotion with a disappearing visual label that only appears when your screen is pointed toward you. Recognizes (7) basic emotions - sad, angry, nervous, neutral, surprised, happy, and disgusted.
Valence recognizes the power of neurodiversity and seeks to empower people of all neurotypes to better interpret emotions without having to change their fundamental communication style. Download on the Apple App Store - https://apps.apple.com/us/app/vibes-for-watch/id1610209299
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Providing Patients and Caregivers a Voice
Providing Patients and Caregivers a Voice
Rare Patient Voice connects patients and caregivers with the opportunity to voice their opinions through surveys and interviews to improve medical products and services.
- For patients and family caregivers —they provide study opportunities to voice their opinions on medical products and services while getting paid for their time. Sign up here.
- For patient advocacy groups —they partner with advocacy and support groups to increase donations.
- For market research firms —they handle patient recruitment and help find the respondents and patient panels needed for marketing research.
- For pharmaceutical and biotech companies —they provide the respondents and patient communities required to support business insight needs and all types of research studies.
Pam Cusick, Rare Patient Voice's Senior Vice President, is an experienced research professional with more than 30 years of expertise in study design, implementation, and analysis. Her background in public health communications and research, coupled with her passion for patient advocacy, dovetail with Rare Patient Voice’s mission and vision. She hopes to expand Rare Patient Voice’s panels to include all patients and caregivers who want to share their opinions and impact their disease category.
Pam earned a BA in Psychology from Sweet Briar College and an MA in Psychology from the New School for Social Research. Pam is past president of the Board of Directors and Scientific Advisory Council Lead for the Horses and Humans Research Foundation. As Senior Vice President, her focus is on the continued growth and success of RPV, with an eye on client services, business development, and oversight of outreach and panel management, marketing, and human resources.
Learn more:
Website: https://rarepatientvoice.com/
FB: @RarePatientVoice
Twitter: @rarepatientvoic
IG: rarepatientvoice
Email: ContactUs@RarePatientVoice.com
Link to Transcript: https://docs.google.com/document/d/1B8_llq6kLTdQp9c4AWMOaUKs6hnYfv20YFqNK7S_plg/edit?usp=sharing
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Find the experts you need, with Our Place you are never alone
Find the experts you need, with Our Place you are never alone!
As a member of Our Place, you can access the Our Places Map! Here you will find Medicaid providers, barbers, swim schools, and anything else you need. It's all based on your location so you'll find what you need in your community.
With the help of the Our Place team and members like you, Our Places will grow with more and more businesses that serve you and your loved ones.
Episode Transcript: https://docs.google.com/document/d/1ToEO2U8RiG68Vvy0EM87XvRvdcbdoyMl/edit?usp=drive_link&ouid=117716030289987185197&rtpof=true&sd=true
Connect to learn more: Website: https://www.joinourplace.com/
Email: sophie@joinourplace.com YouTube: https://www.youtube.com/@ourplace3743/videos
Aqua-Tots Swim School - https://www.aqua-tots.com/
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The Caregiver's Journey with Sue Ryan
Episode Transcript: https://docs.google.com/document/d/1BEe8i7gtN0tD4OZo6lzNcc5_omk3L_Ka/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true
Sue Ryan knows what it feels like to be standing at the edge of the abyss in our life – or to be down in the abyss – not knowing where to turn, what to do, or who to talk with.
She navigated the transition from being the adoring daughter of my hero, my Dad, to a journey with him as a caregiver through his diagnosis of a type of Dementia.
She's navigated the transition from being a consistent top performer in her company and achieving the highest recognition, to realizing it wasn’t where she wanted to be, having no idea where to turn, what to do, or who to talk with.
She navigated the journey of being single into her late forties in a career that had her traveling frequently and doing what she wanted when she wanted, to falling in love and marrying Jack – the love of her life – becoming part of his large family, embracing his desire to retire, move, and travel.
She navigated the transition from being the loving wife and partner with Jack, to our being told he was now an Alzheimer’s patient and I was now his caregiver – the path we’ve been journeying together for the past eleven years until his death in 2023.
She navigated the transition from living her life being who she thought others wanted her to be, to discovering who she's meant to be, recreating her life, and living with joy from the highest expression of who she is. She's become the master of transitions and is here to help you become the master of yours.
She doesn't want your transitions to be as difficult as hers were or take you as long to learn how to intentionally – and successfully – navigate them as it took her.
Learn more:
Caregiver's Journey Course: https://sueryan.solutions/the-caregivers-journey/
Sue's book, "Our Journey of Love: 5 Steps to Navigate Your Care Giving Journey": https://amzn.to/45dzNTq
Website: https://sueryan.solutions/
FB: https://www.facebook.com/suearmstrongryan/
Email: sue@sueryan.solutions
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Introducing "The Emotionally Naked Podcast"
AutismDadvocate.org is an online support forum for dads with children with autism and about the commonalities we all face as fathers.
Frequently, fathers follow the American tradition of rugged individualism and rarely have an honest and earnest discussion on the challenges of fatherhood. What does it mean to be an engaged father? What are the tensions and polarities we all face as fathers? And why do we so often soldier forward alone?
Paul's first interview - https://spotifyanchor-web.app.link/e/qmPDbb69eDb
Holly Robinson Peete's interview with Paul - https://www.autismdadvocate.org/what-do-dads-need-to-hear-from-momsofasdkids
Rodney & Holly Robinson Peete's interview with Paul - https://www.autismdadvocate.org/journey-of-a-father-with-rodneypeete Contact Paul
Website: https://www.autismdadvocate.org/ Podcast: https://podcasts.apple.com/us/podcast/the-autism-dadvocate-podcast/id1538437276 Instagram: #autismdadvocate
Facebook: @AutismDadvocate
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Navigating Life Transitions: Coaching vs. Therapy
Navigating Life Transitions: Coaching vs. Therapy
Discover the Differences and Find Your Path to Personal Growth and Success
Barbara Kay Coaching (BKC) provides custom coaching to individuals, teams, leaders and groups. As a business psychology and achievement expert Barbara is a personal trainer for business success.
As a behavioral scientist and productivity coach, Barbara speaks nationally on a wide range of achievement topics including Growth, Productivity, Leadership, Teams, Client Relationships, Behavioral Finance, Change, Women, Branding & Communication.
Business Psychology and Productivity Coach, author of many articles and two books, Barbara serves clients through coaching, consulting, and speaking on Growth, Productivity, Teams, Client Relationships, Communication, Change, and Leadership. She has been serving clients since 1998, with dual degrees and credentials in Clinical Psychology and Coaching. Professionally licensed, she completes ongoing development education and is a member of the American Psychological Association. Barbara Kay Coaching supports client diversity goals as a Woman Business Enterprise and Certified Diversified Supplier.
Get her books:
"The Top Performer's Guide to Change: Overcoming Fear to Turn Change into Opportunity"
"The $14 Trillion Woman: Your Essential Guide to Engaging the Female Client"
Connect with Barbara:
Website: Barbara Kay Coaching
Email: mailto:barbara@barbarakaycoaching.com
International Coaching Federation (ICF): https://coachingfederation.org/
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Blog - https://ejorgensenwordpresscom.wordpress.com
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Andrew Arboe - Autistic Self-Advocate and Speaker
Andrew is an autistic self-advocate with over five years of professional experience helping autistic individuals be empowered in their lives by sharing his experiences in public speaking and freelancing work with organizations. Andrew was the keynote speaker for Autism Connection's 32 Annual Autism Conference in Springfield, Massachusetts. Andrew is also on various boards like in AANE (Speaker Bureau) and HAAPE (Autism Expert Board).
His motivation is to better the world out there one day at a time. His adaptive work career allowed him to gain perspectives in the autistic, parent, and professional worlds. Andrew believes that collaboration being key for solving issues with transitioning to adulthood and transportation. He focuses on transportation because it can affect various milestones and can impact both the social and work worlds for individuals. He knows how it feels about how limiting it can be to not have a reliable transportation option. Andrew helps individuals find their own path to finding what works for them. After all, each autistic individual has their own needs, and those needs should be embraced. That is why Andrew created the Autism and Driving Resource Database to help them find driving resources in their state.
Connect with Andrew
Website: https://andrewarboe.weebly.com/
Email: arboea@gmail.com
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Navigating LGBTQ+ Planning and Allyship: Complexities, Legislation, and Support
In this enlightening podcast episode, join us as we delve into the intricacies of LGBTQ+ financial and legal planning. Our guest, Mindy Neira, a seasoned financial planner with a focus on serving the LGBTQ+ community and individuals with disabilities, provides valuable insights into the challenges and considerations faced by this diverse group.
From navigating complex legislation to understanding the impact of legal changes on families, Mindy offers guidance on planning for a more inclusive and equitable future. Discover the role of allyship in financial planning, how to recognize an ally, and explore the new D.E.I. (Diversity, Equity, and Inclusion) certification that helps identify planners committed to fostering inclusive environments. Join the conversation and gain a deeper understanding of how planning intersects with identity, rights, and community support.
Mindy is Co-Chair of the National Association of Personal Financial Advisors (NAPFA) Diversity, Equity, and Inclusion Steering Committee. Her specialty focus area is with individuals and families who have planning needs related to disability or other medical conditions. She also partners with those who are Lesbian, Gay, Bisexual, Transgender, or Queer (LGBTQ).
Connect to learn more:
Website: https://moderawealth.com/people/mindy-neira/
Email: mindyn@moderawealth.com
LinkedIn: https://www.linkedin.com/in/mindyneira/
Find an Advisor tools:
NAPFA: https://www.napfa.org/find-an-advisor
FPA: https://www.plannersearch.org/
XYPN: https://connect.xyplanningnetwork.com/find-an-advisor
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For more information about True North Disability Planning you can find us here:
Web: https://truenorthdisabilityplanning.com/
Podcast (ABCs of Disability Planning) - https://anchor.fm/abcs-disability-planning
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