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One Of The Few: Life With A Rare Disease

Connecticut Public Radio | By Chion Wolf
Published December 18, 2020 at 10:11 AM EST
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Sigurd Decroos - freeimages.com
Erin Rupolo is the Mid-Atlantic Regional ChairPerson for the Williams Syndrome Association and she's a Special Education Paraeducator in Kensington, MD. Sophie Rupolo is 12 years old and has Williams Syndrome.
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Erin Rupolo is the Mid-Atlantic Regional ChairPerson for the Williams Syndrome Association and she's a Special Education Paraeducator in Kensington, MD. Sophie Rupolo is 12 years old and has Williams Syndrome.
Allyson Buck of Greenwich, Connecticut is Sam's mom and the co-founder of the VWM Families Foundation. Sam Buck is 10 years old and has Vanishing White Matter Disease
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Allyson Buck of Greenwich, Connecticut is Sam's mom and the co-founder of the VWM Families Foundation. Sam Buck is 10 years old and has Vanishing White Matter Disease.
Courtesy of Allyson Buck / Venture Photography Greenwich

It’s estimated that there are as many as 7,000 different known rare diseases in the world. In the The U.S., it’s defined as any disease or condition that affects fewer than 200,000 people.

Today, you’ll meet two of them, and their mothers.

Join the conversation on Facebook, Twitter, and email.

GUESTS:
  • Erin Rupolo is the Mid-Atlantic Regional ChairPerson for the Williams Syndrome Association and she's a Special Education Paraeducator in Kensington, MD
  • Sophie Rupolo is 12 years old and has Williams Syndrome
  • Allyson Buck of Greenwich, Connecticut is Sam's mom and the co-founder of the VWM Families Foundation
  • Sam Buck is 10 years old and has Vanishing White Matter Disease

Catie Talarski contributed to this show.
Health
Chion Wolf
Chion Wolf is the host of Audacious with Chion Wolf on Connecticut Public, spotlighting the stories of people whose experiences, professions, or conditions defy convention or are often misunderstood.
See stories by Chion Wolf

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Federal funding is gone.

Congress has eliminated all funding for public media.

That means $2.1 million per year that Connecticut Public relied on to deliver you news, information, and entertainment programs you enjoyed is gone.

The future of public media is in your hands.

All donations are appreciated, but we ask in this moment you consider starting a monthly gift as a Sustainer to help replace what’s been lost.

Donate