Dyfy The Storm

This episode focuses on the important role that Dystonia Foundations play in connecting dystonia patients with each other and to the medical community. Janet Hieshetter, Executive Director of Dystonia Medical Research Foundation in the United States, and Archana Castelino, National Director of Dystonia Medical Research Foundation Canada, discuss their collaborative efforts to create awareness through education and research with the goal of empowering and supporting dystonia patients. Janet and Archana discuss the many accomplishments of the foundations and highlight the challenges faced today. Finally, they remind listeners that their respective goal is to close their doors forever and make life better for those with dystonia.

To learn more about DMRF and DMRF Canada, please check out the links below:

Shelby Newkirk is a Canadian Paralympic Swimmer, a world record holder, and a dystonia advocate who is an inspiration for the community. Shelby was the 2021 Ambassador for Dystonia Medical Research Foundation Canada’s largest national fundraising event, Freedom to Move: Run, Walk and Wheel for Dystonia.

In this episode, Shelby shares with listeners her dystonia journey and the challenges associated with being diagnosed in middle school at age 13. She also talks about her path to becoming a professional swimmer in addition to achieving her goal of swimming in the Tokyo Paralympics! Listeners can learn tips on how to create a work-school-life balance and learn more about Shelby’s future goal of making gym class more accessible for children with disabilities.

To follow Shelby’s journey and support her two small businesses, please visit the links below:

Jirome De Castro is a triathlete, a runner, and a dystonia warrior from the Philippines. In this episode, Jirome discusses his trials and tribulations with cervical dystonia, detailing how his diagnosis has changed him for the better as well as the hardest parts about living with dystonia. Jirome also talks about his amazing feat of participating in two marathons, a duathlon and two 70.3 Ironman Races! Finally, Casey and Jirome share words of encouragement for other dystonia warriors and the importance of support groups.

To learn more about Jirome and help support the Sunshine Care Foundation in the Philippines, please click the links below:

Sumbul Zafar is a wife, mother of 3, business owner, competitive swimmer, and someone living with dystonia. This episode focuses on Sumbul’s biggest blessing: a diagnosis journey that allowed her to discover herself. Casey and Sumbul discuss the importance of advocating for yourself and the various lifestyle changes that come with this diagnosis. Sumbul also talks about her amazing goal of swimming in the 2022 FINA World Masters Championship in Japan. Finally, they remind listeners that you are not alone in your journey.

To learn more about Sumbul, please check out the link below: