Adults with SMA

Cure SMA is committed to supporting all members of the SMA community, including adults with SMA.

With medical and technological advances, individuals with all types of SMA (types I-IV) are living longer and more active and independent lives. As such, Cure SMA is committed to ensuring that the needs of the growing and vibrant Adults with SMA community are addressed at both the national and chapter levels.

Annual SMA Conference

Each year, Cure SMA hosts the largest SMA conference in the world for researchers, healthcare professionals and families to network, learn and collaborate. For adults with SMA of all types and ages, the conference provides a unique time to share experiences with each other, meet with leading researchers and healthcare providers, learn about new care plans and emerging treatments as well as serving as a mentor for newly diagnosed families.

Here’s what some adults who have attended the conference have had to say about their experience:

“The most powerful conference experience as [an emerging]… adult was when I was 17, and I went to the "adults with SMA" roundtable…I had all this pent up anxiety about not fitting in, in society because of my disability, and being in that room, feeling like I could ask my peers pretty personal questions about their life as an adult with our disease, gave me a lot of hope.” – Hannah

"This past 2016 Cure SMA conference marks the first ever National conference I have attended. I do not regret many things in my life, but not going to these annual events earlier remains one of them. They are chock full of information that tailors to the individuals experience with SMA. The supportive environment makes it easy to connect and share with other affected individuals. I personally found the workshops beneficial and was a great way to connect to other people experiencing the same issues I face on a daily basis. The Cure SMA team did a great job in emphasizing that doctors, drug representatives, and staffing are here for you. They are here to listen, educate, and discuss real life issues that affect you everyday. These conferences are a sure-fire way to get involved and support the fight for SMA, and I am excited to see what the next conference holds in store!" – Brynne

“My wife and I loved the great workshops and learned so many important things! It was wonderful being able to meet and talk with people that knew exactly what we were going through! We will definitely go again when possible!” – Brandon

"Traveling long distances is difficult for me, so when the CureSMA conference came to my neck of the woods in 2013 and again in 2016, I jumped at the chance to connect with researchers and my adult peers with SMA on such a scale. I got to meet up with people and families that I had only previously known online. The conference gave us all some much needed quality time together to smile, laugh, and talk about both the challenges and unexpected beauty of everyday life with SMA. The further opportunity to question and engage with researchers in various settings was a bonus. Their willingness to share their research projects with the people they serve was refreshing and informative. The amount of information available to us was a little overwhelming at times, but I wouldn't have it any other way. We live in exciting times, and the CureSMA conference is a great way to keep up with the latest developments!" – Julie

Adult Subcommittee Members

Carolyn Barrett
Jaclyn Greenwood
Melissa Milinovich
Brad Nunemaker
Shannon O'Brien

To contact The Adult Subcommittee as a whole or individually with questions or concerns please email adults@curesma.org and someone will be in touch.

Careers

Many adults with SMA lead successful and fulfilling careers both in traditional workspaces and through other telecommuting options. Below is a list of links that may be helpful.

Independent Living

Adults with SMA live in a variety of living situations, whether in homes or apartments, and alone or with family members or roommates. 

Centers for Independent Living can help you determine how to get the necessary care that you need no matter what living situation you are in. 

ABLE Accounts Information

Following the passage of the Stephen Beck Jr., Achieving a Better Life Experience Act of 2014 (ABLE), eligible individuals and their families are able to set up ABLE savings accounts that will not effect SSI, Medicaid and other benefits. To learn more, please visit: http://www.ablenrc.org/about/what-are-able-accounts

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