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Heaton Family
Our son Grant is six years old and was diagnosed with Duchenne Muscular Dystrophy at age three. Duchenne is a genetic disease that destroys muscle, all of them. We are dealing with this disease as best we can and doing what we can to keep Grant ambulatory for as long as possible. To this end…
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New type of muscular dystrophy discovered after girl’s diagnosis
Researchers have discovered a new, unrecognized type of muscular dystrophy that’s caused by inherited mutations in the SNUPN gene, a study reports. Most people who carry the mutations develop symptoms of muscle weakness before age 2, and the muscles of the upper arms and legs are mainly affected. “This study represents a significant leap forward…
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Miner Moebel Family
My grandson Shepherd has been living with his Duchenne diagnosis for 5 years. Since that day in 2019, our family has turned into crusaders for the Cause. It has been my privilege and honor to use every trick, tool, and trade God has given me to raise awareness and money for a cure. The post…
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Aviles Family
Our Duchenne journey began like so many others. Gabe, our fourth son, wasn’t reaching his developmental milestones. His doctor told us there was nothing wrong with him, and that, as the “baby,” he was just spoiled. When we received his diagnosis, we heard that phrase that makes time stand still: “Give him a good life, because…
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Thank You for Honoring PPMD’s 30th Anniversary and Fighting for Every Future With Us
As I’ve reflected on the incredible journey of PPMD these past few weeks, I am overwhelmed with gratitude for each and every one of you who have supported us over three decades. From the founding of PPMD in Cincinnati 30 years ago to the present day, our unwavering commitment, passion, and resilience have been the…
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PPMD Awards $250,000 to Support Clinical Research Network for Duchenne Babies Identified by Newborn Screening
PPMD is excited to announce a $250,000 award to Bo Hoon Lee, MD, from the University of Rochester to support the development of a clinical research network for Duchenne babies identified through newborn screening efforts in New York State (NYS). The initiative aims to support newborn screening implementation efforts, inform clinical care guidelines for young…
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Catch Up on PPMD’s Inaugural PPMD Together Event in Cincinnati, Ohio
On April 19th and 20th, PPMD launched our brand new PPMD Together meeting series in Cincinnati, Ohio. The date and location held immense significance as we gathered to commemorate 30 years since the incorporation of PPMD in this very city in April 1994. Reflecting on 30 years of progress, our PPMD Together: Cincinnati meeting was…
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Most people with DM1 develop cardiac problems: Danish study
Most people with myotonic dystrophy type 1 (DM1) develop heart problems, according to a Danish study that followed patients for about 10 years. “Life-long cardiac screening is crucial, and we recommended that repeated follow-up is performed,” its researchers wrote in “Natural history of cardiac involvement in myotonic dystrophy type 1 – Emphasis on the need for lifelong follow-up,” which…
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I’m learning to treat my boys with DMD as individuals, and not a trio
I have three sons with Duchenne muscular dystrophy (DMD). Max, 18, Rowen, 15, and Charlie, 13, are part of a bustling family, joined by four other siblings: Lexi, 22, Chance, 16, Mary, 9, and Callie, 2. We have no sets of twins or multiples, yet I have often grouped together Max, Rowen, and Charlie. Max…
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Napa in Newport Celebrates a Decade of Impact and Raises More Than $1.35M for CureDuchenne
Southern California’s Premier Wine Event Brought Together Acclaimed Napa Valley Vintnersand Philanthropists to Drive Research for Duchenne Muscular Dystrophy NEWPORT BEACH Calif., April 24, 2024 – CureDuchenne and Vintner Chair Alpha Omega hosted the Tenth Annual Napa in Newport on Saturday, April 20, 2024, at Pendry Newport Beach, which raised more than $1.35 million to find and fund a cure for Duchenne…
