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One Of The Few: Life With A Rare Disease

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.

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.

The independent journalism and non-commercial programming you rely on every day is in danger.

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SOMOS CONNECTICUT is an initiative from Connecticut Public, the state’s local NPR and PBS station, to elevate Latino stories and expand programming that uplifts and informs our Latino communities. Visit CTPublic.org/latino for more stories and resources. For updates, sign up for the SOMOS CONNECTICUT newsletter at ctpublic.org/newsletters.

SOMOS CONNECTICUT es una iniciativa de Connecticut Public, la emisora local de NPR y PBS del estado, que busca elevar nuestras historias latinas y expandir programación que alza y informa nuestras comunidades latinas locales. Visita CTPublic.org/latino para más reportajes y recursos. Para noticias, suscríbase a nuestro boletín informativo en ctpublic.org/newsletters.

The independent journalism and non-commercial programming you rely on every day is in danger.

If you’re reading this, you believe in trusted journalism and in learning without paywalls. You value access to educational content kids love and enriching cultural programming.

Now all of that is at risk.

Federal funding for public media is under threat and if it goes, the impact to our communities will be devastating.

Together, we can defend it. It’s time to protect what matters.

Your voice has protected public media before. Now, it’s needed again. Learn how you can protect the news and programming you depend on.