Spinal muscular atrophy (SMA) is sometimes described as a “common” rare disease. This means that, although it’s rare, there are enough people who live with SMA to inspire research and treatment development, as well as the creation of SMA organizations worldwide.
It also means that if you have this condition, you may have yet to meet anyone else who does in person. Exchanging ideas and experiences with others who have SMA may help you to feel less isolated and more in control of your journey. There is a thriving online SMA community waiting for your arrival.
Forums and social communities
Get started exploring online forums and social communities that focus on SMA:
SMA News Today discussion forum
Browse or join the SMA News Today discussion forums to share with and learn from others whose lives are affected by SMA. Discussion threads are categorized into different topic areas, such as therapy news, going to college, teens, and Spinraza. Register and create a profile to get started.
Facebook SMA communities
If you’ve spent any time on Facebook, you know what a powerful networking tool it can be. The Cure SMA Facebook page is one example where you can browse posts and interact with other readers in the comments. Search through and join some of the SMA Facebook groups, such as Spinraza Information for Spinal Muscular Atrophy (SMA), SMA Medical Equipment & Supply Exchange, and Spinal Muscular Atrophy Support Group. Many of the groups are closed to protect member privacy, and admins may want you to introduce yourself before joining.
Here are a few of the bloggers and social media gurus who share their experiences about SMA online. Take a moment to peruse their work and get inspired. Maybe someday you’ll decide to create a regular Twitter feed, establish a presence on Instagram, or build your own blog.
Alyssa K. Silva
Diagnosed with SMA type 1 just before she turned 6 months old, Alyssa defied her doctors’ prediction that she would succumb to her condition before her second birthday. She had other ideas and instead grew up and attended college. She’s now a philanthropist, social media consultant, and blogger. Alyssa has been sharing her life with SMA on her website since 2013, is featured in the documentary “Dare to Be Remarkable,” and created the Working On Walking foundation aimed at paving the way to a cure for SMA. You can also find Alyssa on Instagram and Twitter.
Graphic designer Ainaa Farhanah has a degree in graphic design, a burgeoning design business, and the hopes of one day owning her own graphics design studio. She also has SMA and chronicles her story on her personal Instagram account, while also managing one for her design business. She was shortlisted in UNICEF’s #thisability Makeathon 2017 for her bag organizer design, an innovative solution to the problems with carrying items that wheelchair users can encounter.
Dallas Texas native Michael Morale was initially diagnosed with muscular dystrophy as a toddler, and it wasn’t until the age of 33 years that he received the correct diagnosis of SMA type 3. He went on to earn business and management degrees and rounded out his career teaching before he went on permanent disability in 2010. Michael is on Twitter, where he shares the story of his SMA treatment with posts and photographs. His Instagram account features videos and photographs relating to his treatment, which involves physical therapy, dietary modification, and the first FDA-approved SMA treatment, Spinraza. Subscribe to his YouTube channel to learn more about his story.
Living with SMA hasn’t stopped Toby Mildon’s influential career. As a diversity and inclusion consultant, he assists companies achieve their goal of increased inclusion in the workforce. He’s also a prolific Twitter user in addition to being an accessibility reviewer at TripAdvisor.
Stella Adele Bartlett
Connect with Team Stella, led by mom Sarah, dad Myles, brother Oliver, and Stella herself, diagnosed with type 2 SMA. Her family chronicles her SMA journey on their blog. They share their triumphs and struggles alike in the fight to help Stella live life to the fullest while raising awareness for others with SMA. The family’s accessible home renovations, including an elevator, are shared via video, with Stella herself excitedly describing the project. Also featured is the story of the family’s trip to Columbus where Stella was matched with her assistance dog Camper.
If you have SMA, there may be times when you feel isolated and want to connect with others who share your experiences. The internet eliminates geographical barriers and allows you to be part of the global SMA community. Consider taking the time to learn more, connect with others, and share your experiences. You never know whose life you may touch by sharing your story.