National Connections Program Helps MDA Families Find Others with Shared Experiences

When MDA launched the MDA National Connections program last year, there was no doubt it would be invaluable for fostering relationships, especially during the pandemic. 

It didn’t take long to see that the MDA community was eager to build connections, with interest coming from families and people of all ages, from parents of children to individuals in their 90s. 

“This is what I have been hoping for the last year when I was finally diagnosed,” says Kirk Kemp of Colorado, who lives with a neuromuscular disease. “I am quite happy to share and learn with others. For many years, I was a teacher and a school principal before moving on to other paths in life, so there is still that part of me that loves to learn and share with others. Just connecting with others has done a great deal to lift my spirits.” 

The program is open to anyone in the neuromuscular disease community, whether they are an individual living with a neuromuscular disease or a caregiver, parent, spouse, or sibling.  

Craig Wood and Curt Sweely, who live with the same neuromuscular disease in Pennsylvania, and Curt’s wife, Mary, all found meaningful connection through the program. “Having a neuromuscular disease or being the spouse/caregiver of someone with a disease can be challenging,” Mary says. “Dealing with a pandemic can make it much worse, leading to isolation or even depression. We are very thankful that Craig accepted MDA’s offer [to connect] because he has been a blessing to us. We live in a rural area, so for us this program works so much better than the support group meetings.” 

MDA has also successfully paired parents or guardians of children living with neuromuscular disease, allowing the adults to manage the relationships among the minors.

Khalilah Neal Morris, whose daughter, Ariel, lives with a neuromuscular disease, used the program to get in touch with two of her daughter’s MDA Summer Camp bunkmates. “Now they [communicate] on Roblox and Kids Messenger,” Khalilah says.

Ready to start making connections? MDA’s care specialists are dedicated to connecting you with others living with relatable and sharable experiences. To get started, complete a form indicating the factors that are important to you in making connections, such as diagnosis, age, interests, and even preferred methods of communication. MDA will then move forward with finding a specific connection for you.

If you have questions about the National Connections program or would like to complete the form to make a connection, contact MDA’s Resource Center at (833) ASK-MDA1 or ResourceCenter@mdausa.org