In May 2024, MDF’s Senior Manager of Community Engagement, Lucie Shiffman, had the pleasure of sitting down with Shaun Moore, one of MDF's new Support Group Facilitators (SGFs) for the newly formed Affected Men’s Group, to learn more about his story, his experiences living with myotonic dystrophy, and his inspiration to get involved with MDF.

MDF is excited to officially introduce Shaun Moore as a new MDF Support Group Facilitator! Shaun lives in North Carolina on a small homestead. He shares a converted barn and farm with his wife, cat, dog, chickens, and a lots of local wildlife. In his professional career, Shaun spent 20 years working in stream and forest restoration, and has successfully managed his own business for the last 10 years. Shaun is delighted to be joining the SGF team and has been amazed by their presence and professionalism in supporting his growth over the last few weeks.

In April 2023, at the age of 44, Shaun was diagnosed with myotonic dystrophy type 1 (DM1). Like many others in the DM community, he spent almost a decade with undiagnosed or misdiagnosed symptoms before being finally being referred to genetic testing. After learning his doctor’s suspicion about a possible DM1 diagnosis, Shaun spent the whole night finding everything he could about DM on Google. This brought him to MDF’s website, where he dove into all the information and resources available to people living with DM and their care providers. After going through the genetic testing process, it took about a month to find out his results. By then, Shaun had learned so much through MDF’s resources that he felt confident his results would indicate DM. He was right.

Shaun continued to explore the DM community by reading and listening to other people’s stories and perspectives in Facebook Groups, chats and even in support group meetings before becoming an active participant. In just a year of attendance, Shaun has established strong friendships, and feels at home in the MDF community. He shares, “It’s really nice to be able to connect with people while sitting in my recliner since I’m not as able to go out and about as I used to [due to physical DM symptoms].” Shaun also shared that he texts and messages his DM friends daily, even outside of the scheduled meetings, having so much in common they feel like family.

Shaun recalls, “I just kept hearing, ‘you have to go to the MDF Annual Conference’ or ‘the Conference is amazing and has so many resources and learning opportunities’, my friends got me interested, but I didn’t know if it would be worth the cost and the stress of travel.” Shaun felt lucky that when he shared his hesitancies his new MDF friends told him about scholarships for first timers.

After receiving a Conference scholarship, he attended his first MDF Annual Conference in Washington, DC during September 2023. Shaun reflects on the experience, “it was amazing, the best experience.” More than that, Shaun felt seen and heard by the amazing clinicians he met throughout the weekend. He made sure to note that the doctors at the MDF Annual Conference were knowledgeable, professional, and respectful. The Conference not only provided a feeling of connection with the larger DM community but also an immense amount of hope for the future.

Now, after attending an Annual Conference and a 2024 MDF Regional Conference, Shaun has decided to give back to the community that welcomed him with open arms. Shaun is excited to be launching the Affected Men’s Virtual Support Group alongside his Co-Facilitators, Ryan Vogels and Jim Dolan. 

When asked what he hopes to bring to the community Shaun joked that he wants to provide a friendly face, “even though that can be hard with DM symptoms”. He is excited to invite members to join this support group, like the encouragement he has received in this space, and to create a community where men feel comfortable sharing the challenges they’re facing. 

The Affected Men’s Virtual Support Group will start on July 1st, with quarterly Monday night meetings. Click here to learn more about the Affected Men's Support Group.

Thank You Avidity Biosciences!

MDF shares our gratitude to Avidity Biosciences for sponsoring our 2024 SGF Training! This spring 45 of MDF SGFs attended a hybrid training program in Chicago to build their knowledge, skills, and confidence to consistently support their peers in the DM community!