News

I have always been an open book about my life. I am a writer, caregiver, and mother living in the Midwest with my family. My husband and I have seven children: Lexi, 24; Max, 20; Chance, 18; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie all live with Duchenne muscular The post I won’t apologize for having 3 children with Duchenne MD appeared first on Muscular Dystrophy News.

Kathryn Arvidson champions accessible mental health treatment for people with disabilities.  Kathryn was diagnosed as a child with a rare degenerative neuromuscular disorder, Pompe disease, that impacts her mobility and pulmonary functioning.  Kathryn earned a master’s degree in social work and served as a Licensed Clinical Social Worker and supervisor for licensed professional counselors in… The post MDA Ambassador Guest Blog: My Pompe Journey appeared first on Quest | Muscular Dystrophy Association.

In this Quest Podcast episode, we chat with Emmy Award-winning filmmaker and disability advocate Samuel Habib and his father and longtime collaborator Dan Habib, the creative duo behind the extraordinary documentary The Ride Ahead. In the film, Samuel opens up about his personal journey into adulthood — navigating housing, employment, relationships, and higher education while… The post Quest Podcast: From Roadmap to Emmy: Samuel and Dan Habib on Filmmaking, Family, and Disability appeared first on Quest | Muscular Dystrophy Association.

The U.S. Food and Drug Administration (FDA) has given Mesoblast the go-ahead to launch a clinical trial testing its cell therapy remestemcel-L-rknd in children with Duchenne muscular dystrophy (DMD). The trial aims to enroll 76 kids with DMD ages 5-9 who are receiving standard-of-care therapies. Participants will be randomly assigned to receive infusions of the The post FDA clears trial testing Mesoblast cell therapy in kids with DMD appeared first on Muscular Dystrophy News.

Quest Media is an innovative, adaptive lifestyle platform from MDA. With the power of this platform, we foster awareness and empowerment and have important conversations with experts, thought leaders, and members of the neuromuscular disease community about topics that matter to them and to the larger community of individuals with disabilities. With so many valuable… The post In Case You Missed It… appeared first on Quest | Muscular Dystrophy Association.

Last Saturday, I attended “Les Misérables: The Arena Spectacular” with my girlfriend at Marina Bay Sands in Singapore. This landmark resort includes a luxury hotel, a shopping complex, and a performing arts theater that hosts international productions. A musical based on the novel by Victor Hugo, “Les Misérables“ is about second chances, justice, love, and The post Seeing ‘Les Misérables’ reminds me of the arc of my own life with DMD appeared first on Muscular Dystrophy News.

The Muscular Dystrophy Association (MDA) and Burn Boot Camp, partnering once again for the 10th annual Be Their Muscle campaign, are calling on everyone across the U.S. to join a workout and help raise awareness and funding to support the neuromuscular disease community. Throughout April, more than 400 Burn Boot Camp locations in 44 states will unite The post ‘Be Their Muscle’ MDA campaign marks 10 years of workouts, fundraising appeared first on Muscular Dystrophy News.

As I grow older with limb-girdle muscular dystrophy, one of my biggest challenges isn’t medical; it’s social isolation. When I was younger, it was easier to say yes to all kinds of social activities. That is likely true for all of us, but with a power wheelchair, progressive muscle weakness, and general fatigue, I decline The post How to combat social isolation while growing older with muscular dystrophy appeared first on Muscular Dystrophy News.

K.L. Cleeton is an entrepreneur, writer, and advocate living with Spinal Muscular Atrophy in rural Illinois. He writes about disability, identity, and the systems that shape how we live at KLCleeton.com. This February, I’ve been spending my Tuesday and Thursday evenings on a video conference with a group of young entrepreneurs and creatives through the… The post Ambassador Guest Blog: How I Use My Voice by Volunteering – and Why You Should Too appeared first on Quest | Muscular Dystrophy Association.

I live in rural Nebraska with my husband, Jason, and seven children. Three of them — Max, 20, Rowen, 17, and Charlie, 15 — live with Duchenne muscular dystrophy (DMD), so I am a mom to many as well as a caregiver. At times, it feels like I’m giving everything I have to my family. The post Making time for self-care is vital in DMD caregiving appeared first on Muscular Dystrophy News.

Getting DMD treatment covered can feel overwhelming, but your care team helps navigate insurance, appeals, and costs. With their support, accessing the care you need can be easier and less stressful. The post 5 ways your DMD care team can make treatment access easier appeared first on Muscular Dystrophy News.

Boys with Duchenne muscular dystrophy (DMD) may be able to regain lost height and overcome growth stunting by switching from traditional steroids to the newer medication Agamree (vamorolone), a new study suggests. While standard corticosteroids are essential for managing DMD-related inflammation, they are known to halt bone growth in children. According to researchers, these new data The post Agamree could reverse growth stunting in boys with Duchenne appeared first on Muscular Dystrophy News.

Jenna Ryerson is a 26-year-old, Missouri-based writer and creative person with a passion for exploring both the practical and the mystical sides of life. With Midwest roots and a naturally curious spirit, she blends grounded insight with intuitive reflection. Her interests range from holistic wellness and natural remedies to symbolism, astrology, and personal growth. Jenna… The post MDA Ambassador Guest Blog: Rurally Complicated appeared first on Quest | Muscular Dystrophy Association.

PTC Therapeutics provided an update to the Duchenne community with additional details following the withdrawal of the ataluren New Drug Application (NDA). The update notes that a limited remaining supply The post Ataluren Update for the Duchenne Community appeared first on CureDuchenne.

Renowned Napa Valley Vintners and Philanthropists Unite in Newport Beach  for a Weekend of Wine, Food, and Purpose  NEWPORT BEACH, California (March 27, 2026) – CureDuchenne, a global leader in advancing research and The post Napa in Newport Raises $1.6 Million to Accelerate Research for Duchenne Muscular Dystrophy appeared first on CureDuchenne.

Today PTC Therapeutics released an updated letter to the Duchenne community on their website with additional details following the company’s withdrawal of the ataluren New Drug Application (NDA). This update includes new information on a… The post PTC Therapeutics Shares Updated Community Letter Regarding Ataluren appeared first on Parent Project Muscular Dystrophy.

Bridgebio Pharma has submitted an application asking the U.S. Food and Drug Administration (FDA) to approve its experimental oral therapy, BBP-418, to treat limb-girdle muscular dystrophy type 2i (LGMD2i). If approved, BBP-418 would become the first available treatment for LGMD2i, also called LGMDR9. In fact, according to Bridgebio, BBP-418 has the potential to become the The post Bridgebio asks FDA to approve potential 1st treatment for LGMD2i appeared first on Muscular Dystrophy News.

Today I write to you with a full heart—because there is news that feels nothing short of miraculous. The FDA has approved a higher‐dose regimen of Spinraza (nusinersen)for people living with spinal muscular atrophy (SMA), and I want to share what this means for me, what I believe this means for our community, and for the… The post Letter from the Editor: How New Higher-Dose Regimen for Spinraza Brings More Hope appeared first on Quest | Muscular Dystrophy Association.

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a rare neurological disorder in which the immune system mistakenly attacks the protective covering of peripheral nerves. This damage disrupts nerve signaling and can lead to muscle weakness, numbness, and problems with balance and coordination. CIDP is estimated to affect between 1 and 9 people per 100,000 individuals. Cause… The post Simply Stated: Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) appeared first on Quest | Muscular Dystrophy Association.

As parents, we dedicate our lives to raising our children. We work long and hard, striving to meet their needs, teach kindness, encourage a strong work ethic, and foster self-advocacy. Our goal is to help them grow into successful adults. As a mom of many, I can see my and my husband’s hard work and The post I’m grateful for meaningful conversations with my adult children appeared first on Muscular Dystrophy News.

Living with a rare disease means navigating a healthcare system that often feels fragmented and overwhelming. For many of us, finding a doctor who truly understands our condition is essential. A rare disease specialist does more than treat symptoms. They see the complete picture of who you are and what you face. They understand the… The post Life with Lily: Why an Expert Specialist is Crucial for Your Care appeared first on Quest | Muscular Dystrophy Association.

In this Quest Podcast episode, we chat with advocate, social media influencer, and President of the Periodic Paralysis Association (PPA), Cienna Ditri, who lives with periodic paralysis. Cienna shares her diagnostic journey — from childhood soccer games where something felt “off” to finally getting answers — and how living with an unpredictable condition has shaped… The post Quest Podcast: Pizazz, Purpose, and Periodic Paralysis: How Cienna Ditri Turns Lived Experience into Advocacy appeared first on Quest | Muscular Dystrophy Association.

When Tyler Long was diagnosed with facioscapulohumeral muscular dystrophy (FSHD) during his senior year of high school, doctors advised him that this diagnosis meant that he should plan his future around a “non-strenuous” lifestyle. For the active and athletic outdoorsman, this suggestion wasn’t in alignment with how he saw himself and how he wanted to… The post Wildland Fire Fighter Refuses to Allow Diagnosis to Define His Life appeared first on Quest | Muscular Dystrophy Association.

PPMD and Secretome Therapeutics (Secretome) are excited to announce that PPMD has provided $250,000 in funding to Secretome through PPMD Venture Pathways, our venture-philanthropy initiative that provides funding to industry to accelerate therapeutic development for… The post PPMD Provides $250,000 in Funding to Secretome Therapeutics Through PPMD Venture Pathways Program to Support Development of Cardiac Cell Therapy appeared first on Parent Project Muscular Dystrophy.

Vocational training, technical education, or a trade school may be even more affordable than you think with these resources and support. The post How to Make Vocational Training Affordable appeared first on Quest | Muscular Dystrophy Association.