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August 28, 2020

TOPIC: Featured News, Patients & Members, Advocacy, Head of the Herd

Head of the Herd: Deb Ayres, President, The Avalon Foundation

Posted at August 8, 2020 08:22 am by Valaree DonFrancesco

At the Head of the Herd is… Deb Ayres, President, The Avalon Foundation.

Deb advocates for… patients with pediatric hypophosphatasia (HPP) and their families.

Deb is located in… Toledo, Ohio.

How Deb got here… When my daughter Avalon (“Avie”) was ten years old, she started treatment for HPP and it was really challenging for her. The treatment can be incredibly painful and have a lot of adverse effects, and you don’t really see… Read More

August 14, 2020

TOPIC: Featured News, Patients & Members, Head of the Herd

Head of the Herd: Katie Wright, Director, The VEDS Movement (a division of The Marfan Foundation)

Posted at August 8, 2020 08:59 am by Valaree DonFrancesco

At the Head of the Herd is… Katie Wright, Director, The VEDS Movement (a division of The Marfan Foundation)

Katie advocates for those living with… Vascular Ehlers-Danlos Syndrome (VEDS)

How Katie got here… When I was diagnosed with VEDS at 28 years old in 2017, I felt very alone. I was also pretty fired up about how long it had taken me… Read More

July 31, 2020

TOPIC: Featured News, Patients & Members, Head of the Herd

Head of the Herd: Seth Rotberg, Co-founder, Our Odyssey

Posted at July 7, 2020 12:15 pm by Valaree DonFrancesco

At the head of the herd is… Seth Rotberg, Co-Founder, Our Odyssey

Seth most frequently checks his… Twitter or Instagram accounts

Seth advocates for… Young adults between the ages of 18 – 35 living with a rare disease or chronic condition

Seth is located in… Boston, Massachusetts

How Seth got here… When I was 15 my mom was officially diagnosed with Huntington’s disease,… Read More

July 17, 2020

TOPIC: Featured News, Patients & Members, Head of the Herd

Head of the Herd: Taylor Kane, Founder and President, Remember the Girls

Posted at July 7, 2020 08:01 am by Valaree DonFrancesco

At the head of the herd is… Taylor Kane, Founder and President, Remember the Girls

Taylor advocates for those living as… Carriers of all X-linked diseases

Taylor is located in… Mount Laurel, New Jersey

Taylor most frequently checks her… Twitter page

How Taylor got here…  In 2001, when I was three-years-old, my dad was diagnosed with a rare X-linked disease called adrenoleukodystrophy… Read More

June 19, 2020

TOPIC: Featured News, Patients & Members, Head of the Herd

Head of the Herd: Beverley Francis-Gibson, President and Chief Executive Officer, Sickle Cell Disease Association of America

Posted at June 6, 2020 08:25 am by Valaree DonFrancesco

At the head of the herd is… Beverley Francis-Gibson, President and Chief Executive Officer, Sickle Cell Disease Association of America

Beverley advocates for those living with… sickle cell disease.

How Beverley got here…

I started working at SCDAA in 2018 because of my personal connection to sickle cell disease. I have a family member who is currently living with sickle cell… Read More