Community Health Leaders
Last updated: November 2023
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, SpinalMuscularAtrophy.net brings you frequent articles, points of view and advice from health leaders and experts.
Current health leaders
Kellie Cusack is a 23-year-old woman (pronouns: she/they) from New Jersey. She enjoys music, singing, escaping into fantasy worlds with books, and most importantly, writing! She has always had a passion for writing since she was young. Read more.
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 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.
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.
Jennifer Greer is a vibrant 28-year-old woman who thrives despite Spinal Muscular Atrophy Type 2. Diagnosed at just 18 months old, she’s been navigating life from her power wheelchair since the age of 2. In 1994, when Jennifer’s journey with SMA began, there was much to learn about Spinal Muscular Atrophy, but she’s tackled it with grace (most of the time) and determination (always). Read more.
Michaela is a 30-something woman living in County Down, Northern Ireland. The youngest of four girls, she loves being surrounded by family and enjoys listening to music, and watching snooker, Disney, and Harry Potter in her free time. She also loves to attempt to predict talent show winners. Read more.
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.
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 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 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.
Previous health leaders
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 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.
Elizabeth De La Cruz-Noland
Elizabeth De La Cruz-Noland is a mom of two. Her second child, Elijah, was born with Spinal Muscular Atrophy Type 1. Elijah was in the nicu for a little over 3 months due to his severe symptoms at birth. Doctors were concerned since he was very floppy at birth. They quickly transported him to a local nicu where they ran a bunch of tests and labs to find a diagnosis. Read more.
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.
Jennifer is a Mom of 3 with 2 disabled daughters. Her oldest daughter Katie has Chiari Malformation and seizures and her youngest daughter Madison has Spinal Muscular Atrophy type 2. Read more.
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.
Jake Saxton is a 20-year-old college student studying human resource management at Temple University. He was diagnosed with spinal muscular atrophy type 3 at the early age of 2 years old.Read more.
Donna Waldrop is a 40-ish-year-old live-in caregiver for her adult best friend living with Spinal Muscular Atrophy type 2. Donna grew up knowing a bit about caregiving when her mother took care of her great-grandmother through her elder years but was never exposed to being a caregiver herself before starting to care for her friend in 2013.
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