As the Muscular Dystrophy Association (MDA) continues our commitment to empowering people living with neuromuscular disease, we are excited to share our 2022 blog series: “Quest for Success”. Success looks different to everyone and this monthly blog details the different paths that individuals with neuromuscular disease have taken to reach their potential and the steps they took to get where they are today. Each month we spotlight one individual from our community and share his or her journey to independence and accomplishment. We hope that these stories empower and inspire our readers to unlo ..read more

National Ambassador Amy Shinneman with her best friend, Shelli It’s an honor to be able to share my thoughts on friendship and what that means to me to celebrate friendship day! For those of you who have been around long enough to remember the popular Dionne Warwick song, “That’s What Friends Are For”, you may remember the chorus which says, “Keep smiling, keep shining, knowing you can always count on me, for sure, that’s what friends are for, for good times, and bad times, I’ll be on your side forever more, That’s what friends are for.” It’s a great song, so if you don’t know it, give it a li ..read more

As the days become longer and the fireflies come out to play, it might be hard to start thinking about the new school year right around the corner.  But when it comes to preparing for your child to have the supports that he or she needs for a fantastic school year, a little bit of planning can certainly go a long way. Navigating your child’s individual accommodation needs and coordinating with his or her school administration can seem overwhelming, but you don’t have to do it alone! MDA’s Resource Center and Family & Community Support Team are here to offer one-on-one assistance to m ..read more

The Muscular Dystrophy Association (MDA) today announced that the 35th Annual Trans New Hampshire Bike Ride (TNHBR) held on June 25, starting and ending at the Portsmouth Senior Center in Portsmouth, New Hampshire, raised over $98,000 for the organization’s mission, with funds still cycling in. The event featured over 40 in-person riders as well as support volunteers. In attendance for the finish line celebration was 2022 MDA Local New Hampshire Recipient Jackson Levine. Direct donations may be made in support of the ride until July 27, 2022 here. For 35 years, the Professional Fire Fighters ..read more

Money kept in savings accounts pulls double duty: It’s accessible to address urgent, unexpected expenses, and it’s also a key component of a long-term investment strategy. In the face of a sudden job transition or a vehicle breakdown, for example, savings can provide flexibility and resilience. For people living with neuromuscular diseases, “Every day won’t be easy, but we shouldn’t spend all our time chasing a dollar, either,” says Jonathan Greeson, CFP, owner of Jonathan Greeson Financial Planning, a wealth management firm based in Pikeville, North Carolina. “Saving and pursuing our goals c ..read more

We’re back! After a 3-year hiatus, advocates are going back to Capitol Hill, but this time virtually. We’re excited to announce that the MDA Advocacy Institute: Virtual Summit and Hill Day will take place on September 28th and 29th, and we hope you can join us! The Virtual Summit & Hill Day is the perfect way to end Muscular Dystrophy Awareness Month, which is celebrated throughout September. During this exciting event advocates will meet face-to-face virtually with your members of Congress, urge them to take action on MDA’s legislative priorities, and interact with amazing fellow advocat ..read more

Style Momentum: Gaining Independence Through Accessible Design and Self-Expression The Year of Independence shines a light on ways the MDA community can effect change in 2022 and beyond — from career to personal relationships to the clothes we wear.  When it comes to fashion and style, people living with disabilities have been using their voices to advocate for more choices — and they are seeing the results.  “People within the disability communities have been advocating for more visibility through clothes and the things that they wear,” says Grace Jun, the founder and CEO of Open S ..read more

As the Muscular Dystrophy Association (MDA) continues our commitment to empowering people living with neuromuscular disease, we are excited to share our 2022 blog series: “Quest for Success”. Success looks different to everyone and this monthly blog details the different paths that individuals with neuromuscular disease have taken to reach their potential and the steps they took to get where they are today. Each month we spotlight one individual from our community and share his or her journey to independence and accomplishment. We hope that these stories empower and inspire our readers to unlo ..read more

Accessible entrance at Dickinson College’s Morgan Hall in Pennsylvania Heading to college in the fall? Take time now to get to know your college’s disability services office to ensure you have what you’ll need to live comfortably, get around campus, and succeed academically. Every college is required by law to have an individual or an office that ensures students with disabilities have equal access to education and are protected from discrimination. They go by various names at different schools, so search your college’s website for words like disability, access, equity, or accommodations to fi ..read more

Myasthenia gravis (MG) is a chronic neuromuscular disease characterized by muscle weakness that worsens after activity and improves after rest. MG is caused by an autoimmune reaction in which the body’s immune system attacks its own tissues, interrupting the connection between nerves and muscles (the neuromuscular junction). MG can occur at any age and affects about 14-20 people in 100,000 in the United States (US). While there is currently no cure for MG, the symptoms of MG can be well-controlled with treatment and most people with MG can experience a high quality of life.   Symptoms of ..read more