![Wait, How Do You Spell That? A Rare Disease Podcast](https://mcdn.podbean.com/mf/web/xi7s8h/PW_Podcast_Logo_small.jpg)
![Wait, How Do You Spell That? A Rare Disease Podcast](https://pbcdn1.podbean.com/imglogo/image-logo/7570344/PW_Podcast_Logo4.jpg)
Wait How Do You Spell That? is a rare disease podcast produced by Patient Worthy. We talk about issues affecting people rare and underdiagnosed conditions and interview advocates from across the community. We‘re definitely not doctors, and we can‘t give you medical advice. We‘re just here to chat and learn about the diseases that even doctors can‘t seem to spell. Check out the latest in rare disease news at PatientWorthy.com.
Episodes
![Epilepsy and Unmet Need, feat. The LGS Foundation and Ovid Therapeutics](https://pbcdn1.podbean.com/imglogo/image-logo/7570344/PW_Podcast_Logo4_300x300.jpg)
Friday Jul 12, 2024
Epilepsy and Unmet Need, feat. The LGS Foundation and Ovid Therapeutics
Friday Jul 12, 2024
Friday Jul 12, 2024
This episode's guests include Dr. Tracy Dixon-Salazar, Executive Director for the Lennox-Gastaut Syndrome (LGS) Foundation, as well as Meg Alexander, Chief Strategy Officer of Ovid Therapeutics. We discuss the treatment landscape for seizure disorders such as LGS and why further research and investment is crucial.
Connect with the LGS Foundation: Website - Facebook - X (Twitter) - YouTube - Instagram - LinkedIn
Connect with Ovid Therapeutics: Website - LinkedIn - X (Twitter) - Facebook
Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02
![Ewing Sarcoma and the New Normal, feat. Patient Advocate Brandi Benson](https://pbcdn1.podbean.com/imglogo/image-logo/7570344/PW_Podcast_Logo4_300x300.jpg)
Friday Jun 28, 2024
Ewing Sarcoma and the New Normal, feat. Patient Advocate Brandi Benson
Friday Jun 28, 2024
Friday Jun 28, 2024
In this episode of the podcast we sit down with Brandi Benson, a U.S. army veteran, author and patient advocate who was diagnosed with Ewing sarcoma in 2008. That’s one of rare family of cancers that develop in bones and the surrounding soft tissues. Brandi shares her story of resilience and survivorship, hoping to inspire others to share their cancer stories story as well.
Connect with Brandi: Website - Facebook - Instagram - YouTube - LinkedIn
Check out Survivorship Today to hear the stories of other cancer survivors like Brandi.
Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02
![50 Years of Supporting the TSC Community, feat. TSC Alliance President and CEO Kari Rosbeck](https://pbcdn1.podbean.com/imglogo/image-logo/7570344/PW_Podcast_Logo4_300x300.jpg)
Friday Jun 14, 2024
Friday Jun 14, 2024
In this episode of the podcast we sit down with Kari Rosbeck, the president and CEO of the TSC Alliance. That’s a nonprofit dedicated to supporting people living with tuberous sclerosis complex and also driving research into promising treatment, among many other things. The TSC Alliance is also celebrating its 50th anniversary this year!
Connect with the TSC Alliance: Website - Facebook - Instagram - YouTube - TikTok - LinkedIn - Threads - Inspire
Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02
![Helping Rare Parents Help Themselves, feat. Ronda Thorington, LPC](https://pbcdn1.podbean.com/imglogo/image-logo/7570344/PW_Podcast_Logo4_300x300.jpg)
Friday May 31, 2024
Helping Rare Parents Help Themselves, feat. Ronda Thorington, LPC
Friday May 31, 2024
Friday May 31, 2024
In this episode of the podcast we sit down with Ronda Thorington, the mother of child living with mixed connective tissue disease. Ronda is also a licensed professional counselor who specializes in empowering parents of children who are living with a rare or chronic diagnosis.
Connect with Ronda: Website - Facebook - Instagram
Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02
![IPF and the Importance of Clinical Trials, feat. Patient Advocate Murray Walz](https://pbcdn1.podbean.com/imglogo/image-logo/7570344/PW_Podcast_Logo4_300x300.jpg)
Monday May 20, 2024
Monday May 20, 2024
In this episode of the podcast we sit down with Murray Walz, a patient advocate who was diagnosed with the progressive lung diseases idiopathic pulmonary fibrosis (IPF) in 2019. Murray discusses the importance of support, clinical trials and why the family factor is crucial for IPF patients.
Connect with the Canadian Pulmonary Fibrosis Foundation: Website - Facebook - Instagram - X (Twitter) - YouTube
Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02
![The MS Poltergeist, feat. Patient Advocate Jennifer Angus](https://pbcdn1.podbean.com/imglogo/image-logo/7570344/PW_Podcast_Logo4_300x300.jpg)
Friday Apr 26, 2024
The MS Poltergeist, feat. Patient Advocate Jennifer Angus
Friday Apr 26, 2024
Friday Apr 26, 2024
In this episode of the podcast we talk with Jennifer Angus, a patient advocate and para dressage competitor who was diagnosed with multiple sclerosis in 2014. Jennifer has long been involved with athletics having a history as a skiing instructor and is a big advocate of horseback riding as a way to heal the body and mind.
Connect with Jennifer Regarding MS: Website - Instagram - Facebook - X (Twitter) - YouTube
Connect with Jennifer Regarding Para Dressage: Instagram
Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02
![The Bespoke Gene Therapy Consortium's New Regulatory Playbook, feat. The Foundation for the National Institutes of Health and Taylor's Tale](https://pbcdn1.podbean.com/imglogo/image-logo/7570344/PW_Podcast_Logo4_300x300.jpg)
Friday Apr 12, 2024
Friday Apr 12, 2024
In this episode of the podcast we talk with Drs. Julie Gerberding and Courtney Silverthorn from the Foundation for the National Institutes of Health (FNIH). They're bringing us updates on the Bespoke Gene Therapy Consortium's new regulatory playbook that is designed to help get certain types of genetic therapies for rare diseases approved and available to patients more quickly. We're also joined by Sharon King, the Co-Founder of Taylor's Tale a non-profit that advocates on behalf of rare disease patients. She talks about why timely development of gene therapies is so important for people like her daughter, who lived with CLN1 disease.
Learn more about the FNIH and the BGTC Regulatory Playbook here.
Learn more about Taylor's Tale and the ways there are helping rare disease patients here.
Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02
![Hemophilia and Axel's Story, feat. Patient Advocate Kristina Robinson](https://pbcdn1.podbean.com/imglogo/image-logo/7570344/PW_Podcast_Logo4_300x300.jpg)
Friday Mar 22, 2024
Hemophilia and Axel's Story, feat. Patient Advocate Kristina Robinson
Friday Mar 22, 2024
Friday Mar 22, 2024
In this episode of the podcast we talk with Kristina Robinson, a patient advocate and mother whose son, Axel, was diagnosed with hemophilia A when he was 10 months old. That’s a rare bleeding disorder, sometimes called “classic hemophilia,” that is characterized by excessive bleeding from cuts, unexplained bruising, joint swelling and more. Since her son was diagnosed, Kristina has been his #1 champion, advocating for hemophilia awareness in her home state and beyond.
Keep up with Kristina and Axel on Instagram!
Learn more about hemophilia and ways that you can get involved at the New England Hemophilia Association!
Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02
![The Road to Resilience and Self-Advocacy, feat. Patient Advocate Kecia J.](https://pbcdn1.podbean.com/imglogo/image-logo/7570344/PW_Podcast_Logo4_300x300.jpg)
Friday Mar 15, 2024
The Road to Resilience and Self-Advocacy, feat. Patient Advocate Kecia J.
Friday Mar 15, 2024
Friday Mar 15, 2024
This episode features Kecia Johnson, an author, music industry veteran and motivational speaker who was diagnosed with HIV/AIDS in her early 20s, and also with a rare form of stage-3 colorectal cancer at age 35. Kecia has been an outspoken patient advocate who has appeared in OutSmart Magazine, Shoutout Atlanta, many different podcasts and also a Walgreen’s ad campaign.
Keep up with Kecia: https://linktr.ee/KeciaJ
Chronic conditions and rare diseases don’t discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: https://shorturl.at/sPV02
![Rare Cancer, Finances and Families, feat. Tony Laudadio of the Tony Foundation](https://pbcdn1.podbean.com/imglogo/image-logo/7570344/PW_Podcast_Logo4_300x300.jpg)
Friday Feb 23, 2024
Friday Feb 23, 2024
In this episode of the podcast, we speak with Tony Laudadio, an oncology patient advocate who was diagnosed with renal cell carcinoma and oligodendroglioma, a type of rare brain cancer. In the years after his remission, Tony also started the Tony Foundation, a non-profit that helps to support families impacted by all types of cancers with crucial financial aid.
Topics Discussed: The importance of a support system, acute diagnoses and financial burden, and more!
If you'd like to learn more about the Tony Foundation and the ways in which they are supporting cancer patients, check out their website here.
Editor's Note: Chronic conditions and rare diseases don’t discriminate. Patient Worthy and its partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a oncology journey to share, reach out here to learn more about how your voice can help spread awareness and inspire individuals from all walks of life.