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 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 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 , , and . Many of the groups are closed to protect member privacy, and admins may want you to introduce yourself before joining.

SMA bloggers

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 since 2013, is featured in the documentary “,” and created the foundation aimed at paving the way to a cure for SMA. You can also find Alyssa on and .

Ainaa Farhanah

Graphic designer Ainaa Farhanah has a degree in graphic design, a , and the hopes of one day owning her own graphics design studio. She also has SMA and chronicles her story on her personal account, while also managing one for . 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.

Michael Morale

Dallas Texas native 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 , where he shares the story of his SMA treatment with posts and photographs. His account features videos and photographs relating to his treatment, which involves physical therapy, dietary modification, and the first FDA-approved SMA treatment, Spinraza. Join to to learn more about his story.

Toby Mildon

Living with SMA hasn’t stopped Toby Mildon’s influential . As a , he assists companies achieve their goal of increased inclusion in the workforce. He’s also a prolific user in addition to being an accessibility reviewer at TripAdvisor.

Stella Adele Bartlett

Connect with , led by mom Sarah, dad Myles, brother Oliver, and Stella herself, diagnosed with type 2 SMA. Her family chronicles her SMA journey on their . 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, , with Stella herself excitedly describing the project. Also featured is the story of the family’s trip to Columbus where Stella was matched with .

The takeaway

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.