Community Advocates

In order to stay up to date on latest treatments, drug discovery, clinical studies and how to cope with spinal muscular atrophy (SMA) every day, brings you frequent articles, points of view and advice from leading patient advocates and experts.

Current advocates

Lewis Beatty

My name is Lewis, a weak type II. I live in New Jersey in the US. Yes, it is New JERSEY, and not New Joisey. So no jokes about the state, because I have heard them all. I am currently 46. Read more.

Erin Courteau

Erin Courteau is a mother to a 4-year-old with type-1 spinal muscular atrophy. Her daughter was diagnosed when she was 8 months old, in October 2017. Erin consequently left her career in hospitality and became a full-time caregiver. Read more.

Suzanne Cutler

Suzanne lives in the suburbs of Philadelphia, PA. She graduated from Tulane University with a degree in History. She has a 9 year old daughter, Ava. Read more.

Megan DeJarnett

Megan DeJarnett is a wife, mother of 2, children's book author, and disability advocate and influencer. She loves encouraging others that there's no normal way to do life and everything is possible. She loves traveling and could eat sushi and mochi ice cream everyday. Read more.

Ainaa Farhanah

At a young age of 25 and with over 20 events, exhibitions and competitions under her belt, Ainaa Farhanah binti Amali is a very active young artist. Her passion for arts since childhood is depicted in all her designs and paintings. Read more.

Chaz Hayden

Chaz Hayden grew up in New Jersey and was diagnosed with spinal muscular atrophy when he was three months old. Doctors told his mom that he wouldn't live to see his first birthday. Chaz’s strength and motivation were definitely harnessed that day, even if he had no idea what was happening. Read more.

Marc Mitnick

Marc Mitnick is a certified Speech Pathologist and patient advocate. He graduated from NovaSoutheastern University, Ft. Lauderdale, FL, with a Master's Degree in Speech Pathology and specializes in Neurogenic and Neurologic speech, voice and swallowing concerns of spinal muscular atrophy patients. Read more.

Maryalice Noon

Maryalice and her husband Dennis raised 3 children: Mike, Dan and Ali. Their oldest child Mike was originally diagnosed around the age of 5 with muscular dystrophy. When he turned 12 a blood test confirmed spinal muscular atrophy. Read more.

Mike Noon

Mike lives in the suburbs of Philadelphia, PA. He was 1st diagnosed with spinal muscular atrophy type 3 in 1989, when he was 12 years old. He was ambulatory all the way into his early 30’s. Read more.

Samantha Przybylski

Samantha Przybylski is a 33-year-old mother and wife, living in Wisconsin. She was diagnosed with spinal muscular atrophy type 3 at the age of 6. At the time of her diagnosis in 1994 very little information was available about this disease. There were no treatments at the time and to this day there is not yet a cure. Read more.

Allie Williams

Allie Williams is a 40-year-old woman with spinal muscular atrophy type 2. She was diagnosed at age 18 months and her parents were told a short life was predicted. Allie, never one to allow other people to direct her life’s ambition, instead has gone on to have an independent and fruitful life. Read more.

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