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November 13, 2020

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

Head of the Herd: Charlene Son Rigby, President and Cofounder, STXBP1 Foundation

Posted at November 11, 2020 08:51 am by Laura Mullen

At the Head of the Herd is… Charlene Son Rigby, President and Cofounder, STXBP1 Foundation

Charlene advocates for those affected by… STXBP1 encephalopathy

Charlene is located in… San Francisco, CA

Charlene most frequently checks her… Twitter account @charleneson

How Charlene got here…  My daughter, Juno, was diagnosed with STXBP1 encephalopathy in 2016 after a three-year journey to find an explanation for her condition…. Read More

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October 9, 2020

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

Head of the Herd: Jennifer Canvasser, Founder and Director, Necrotizing Enterocolitis (NEC) Society

Posted at October 10, 2020 08:33 am by Laura Mullen

At the Head of the Herd is… Jennifer Canvasser, Founder and Director, Necrotizing Enterocolitis (NEC) Society

Jennifer advocates for those affected by… necrotizing enterocolitis (NEC)

Jennifer is located in… Davis, California

Jennifer most frequently checks her… Twitter page

How Jennifer got here… My son Micah developed NEC when he was six weeks old. He endured multiple bowel resections which left him with… Read More

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September 24, 2020

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

Head of the Herd: Susan Thornton, CEO, Cutaneous Lymphoma Foundation

Posted at September 9, 2020 08:35 am by Laura Mullen

At the Head of the Herd is… Susan Thornton, CEO, Cutaneous Lymphoma Foundation

Susan advocates for those living with… Cutaneous lymphoma

Susan is located in… Philadelphia, PA.

You can connect with the CL Foundation on… Facebook or LinkedIn

How Susan got here…  In addition to being the current CEO of the Cutaneous Lymphoma Foundation, I’m also a patient. I’ve been living… Read More

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September 17, 2020

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

Head of the Herd: Amber Freed, Founder and CEO, SLC6A1 Connect

Posted at September 9, 2020 08:41 am by Laura Mullen

Head of the Herd Spotlight, Amber Freed SLC6A1 Connect

At the Head of the Herd is… Amber Freed, Founder and CEO, SLC6A1 Connect.

Amber advocates for… children living with the rare neurological condition SLC6A1 and their families.

Amber is located in… Denver, Colorado.

You can follow Amber and SLC6A1 Connect… on Facebook and Twitter.

How Amber got here…

I became involved in… Read More

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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 Laura Mullen

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

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