People with spinal muscular atrophy (SMA) are living longer, attending college, pursuing a variety of careers, and traveling more, thanks to a combination of new disease-modifying therapies, better quality care, and improved rights for those with disabilities.
It also means they now are encountering unique sets of challenges in adulthood, including paying for caregivers, finding mobility devices, navigating public and private transportation, and managing a largely inaccessible travel system.
With that in mind, SMA UK and Martyn Sibley, an entrepreneur with SMA type 2, teamed up to launch an adult network, formally known on Facebook as the SMA Insights Group, seven years ago, where older patients with SMA in the U.K. can ask questions, find new friends with the same condition, and learn how to live with the disease as an adult.
“As the world has moved on economically and socially, there’s more opportunities for people with disabilities and people with SMA,” Sibley, 37, said in a video interview with SMA News Today. “In the end, it was this realization that there’s this cohort part of the SMA community that was losing touch with the charity but still had problems and challenges.”
Since its start in 2014, the U.K. group has grown to 81 participants. (Interested SMA patients who live in the U.K. can join the group through an application form on SMA UK’s website.) Some of its members meet every couple of months on a video call, where they’ll play party games like Cards Against Humanity and chat about their experience with SMA.
“It’s about giving people connection and reassurance and giving them a safe environment where people with SMA as adults can talk openly and feel confident in doing that,” SMA type 3 patient Josh Wintersgill, who, with Sibley, manages the group, said in a video interview with SMA News Today. They organize virtual social engagements, start conversations, answer questions, and moderate content to ensure it remains a positive community.
For example, one post created by Wintersgill on the private Facebook page included a link to an article about a man with muscular dystrophy who adapted his power wheelchair to suit his lifestyle with a variety of attachments, including a hand warmer to aid with poor circulation.
Because the Facebook page cannot be viewed publicly due to the content’s private nature, Wintersgill sent a screenshot of the post to SMA News Today.
Discussions about treatments have been the hottest conversation topic recently. Wintersgill, who currently takes Evrysdi, has fielded questions about how to access the therapy, which patients take at home in liquid form. He’s also seen many conversations about assistive tech, fixing and adapting power wheelchairs, and travel.
While the network is associated with the SMA UK charity, it isn’t directly involved in the day-to-day management of the page.
“If any topic crops up where they think SMA UK may have some information or could get involved in an advocacy for service or access to treatment issue, they get in touch with us,” said a spokesperson in an emailed statement. “And if we have questions or are looking for adults’ views, we know we can always go to the network via them.”
The organization does, however, pay Sibley and Wintersgill a fee for the three to five hours they spend per week running the page. And the two managers meet with the organization, sharing insights and trends from the page, but never sharing private information.
“Josh and I are trying to be a conduit between the charity and the adult community,” said Sibley, who lives near Cambridge, England.
The two administrators have leveraged their shared professional experiences in managing the SMA Insights Group.
Sibley started Purple Goat Agency 18 months ago. In his role as CEO, he helps tier-one brands connect with the disabled community. His work sits at the intersection of disability, inclusion, and entrepreneurship, and Sibley sees similar themes in running the SMA Insights Group.
“It really is about how we can understand the network … the needs, the wants, the marketing angle — really listen and ask questions to what your audience needs and want,” Sibley said. “And then how to give value to them and give solutions.”
Wintersgill, 28, who had worked previously for three-and-a-half years as a cybersecurity manager, decided to start his own business, Able Move, which sells travel-related accessibility equipment, after having his own challenges getting from point A to point B. He said that he’s now able to answer questions about travel issues and address some of the difficulties people with SMA have finding a job.
SMA Insights Group also gives members a chance to contribute to the SMA UK’s content stream. Sibley hosts the Living With SMA Podcast, and Wintersgill has shared his own research into traveling with a disability in a couple of blog posts. The invitation for other community members to share their own stories is open, Sibley said.
“We’ve been sharing some of the stories people in the network have sent us as well as ones from others in the UK SMA community this month — these are what people want to know and what really raise awareness of living with SMA,” the SMA UK spokesperson said.
The network also can help fellow members resolve serious situations, apart from general advice for living with SMA. That was the case during one of its recent game nights, as Wintersgill recounted.
While interacting with one of the members on the video chat, he observed that something wasn’t right. Wintersgill said there was a problematic situation with one of the members in terms of care at his college. He declined to share specifics with SMA News Today due to privacy concerns, but said the administrators reached out to SMA UK, and the situation eventually was resolved.
“If people are struggling and they can’t necessarily call it out, but can join a community and imply that something’s not right, so we can pick up on that, I think that’s a really powerful message and success story of the importance of the network,” Wintersgill said.