How To Participate
-
Register
Register for one of our in-person events or participate on your own through our
Walk-n-Roll USA program. -
Fundraise
Ask your family, friends and colleagues to support your efforts by donating to create a better future for the SMA community.
-
Walk-n-Roll
Join us at our Walk-n-Roll and celebrate the collective impact our community is making for the SMA Community!
Your Fundraising Dollars at Work
-
Research
Our research strategy focuses on three main areas: basic research, drug discovery, and clinical trials. Our connections to the SMA community drive comprehensive research to address SMA from all angles.
-
Advocacy
Our Advocacy Team actively works with key partners, including individuals with SMA and family advocates, to advance Cure SMA's Greater Independence agenda.
-
Community Support
Cure SMA provides thousands of individuals and families support through vital care packages, access to our free equipment pool, virtual and in-person education opportunities, and more!
Cure SMA Story Spotlight
College Try:
Joe's Story
Joe is 20 years old and entering his junior year of college at Seton Hall, studying computer science and data analytics. Ideally, he would like to become a video game designer. Last year was Joe’s first time living on-campus and the experience of living independently for the first time is one of the best things to happen to him.
However, that doesn’t mean that college and transitioning to a life of more independence has been easy for Joe. He’s faced battles receiving the accommodations he needed in a class, as well as difficulties being able to participate in social activities, like fraternity mixers, which are held in non-accessible buildings.
Mighty River:
River's Story
River, meaning a large natural stream of water flowing, is a fitting name for an active boy full of energy and excitement. Dee describes River as “a typical three-year-old boy outside of him not walking.” River loves to pop wheelies in his wheelchair and cruise around wearing a superhero cape. He loves to exert his independence and is firmly in the toddler, “I want to do it myself phase.”
Despite his desire for independence, River’s mother, Dee, has been his world since his birth. “It’s just been River and me. I’m a single, working parent,” says Dee. “River was born in February 2020, a month before the world shut down due to COVID-19, which meant that we were almost immediately isolated. It was hard in general being a new mom and to add COVID on top of it was an extra challenge.”
Making Meaning:
Sarah's Story
In Sarah Manuel’s career as a school psychologist, she mentors elementary, middle, and high school students as they navigate everyday challenges in life and education. Though it took time and self-acceptance, she is confident that living with SMA helps her relate to students on a deeper level. “Just because there are limits that a diagnosis places on someone doesn’t mean it reaches every aspect of your life. There’s so much more that you can do than what you can’t,” she shared.
According to doctors, Sarah was not supposed to live past early childhood. “I like to say that I’m 40 years past my expiration date. I fully celebrate my birthday and enjoy recognizing my age because it feels like such a gift.”