December 25, 2018 / Community

The heart of ending Duchenne

Just more than a year ago, I knew little about Duchenne muscular dystrophy and had never heard of PPMD. So much has changed since the day when our then 4-year-old grandson, Henry, was diagnosed. Today, I am on PPMD’s Board of Directors and an active participant in the fight to end Duchenne. Our hearts broken from Henry’s diagnosis, we have found strength and purpose in the extraordinarily committed Duchenne community.

Last year, my wife Gail and I created a personal fundraising page that our friends and family continue to generously support. Our daughter Emily biked with me through the five boroughs of New York City as part of a fundraiser and Henry’s parents, my daughter Diana and her husband Jon, brought their friends together to host a game night against Duchenne. We pore over every bit of information we can put our hands on to learn more about what this diagnosis means for Henry and his future, because like many of you we feel overwhelmed and we want to do everything we can for our grandson, our daughter, and our son-in-law.

After Henry’s diagnosis, it was immediately clear that PPMD was going to be an invaluable resource for all of us. PPMD is leading this community in supporting the most promising research for kids like Henry. PPMD has also been there for us, at every crossroads, to answer every question. No one knows Duchenne better. Join us in supporting PPMD’s critical cardiac research and have your gift doubled.

Because of PPMD’s support of promising treatments via their Gene Therapy Initiative launched in 2016, we are seeing promising early results from the handful of kids undergoing micro-dystrophin gene therapy treatment. This therapy could hold potential for Henry and other kids like him.

But, PPMD doesn’t stop there. PPMD understands that we need to ensure that a heart affected by Duchenne can withstand treatments like gene therapy and support these kids as they get older. That’s why PPMD is expanding their Cardiac Initiative and asking for your donation. By supporting PPMD with your gift today — a gift that will be doubled until we reach our goal of $550,000 — you are helping PPMD keep hearts strong.

We are not naïve. We know that the future for Henry will be tough. But, we believe that PPMD is blazing a trail forward that will open doors we never thought possible. That is why Gail and I will keep fundraising for PPMD, keep poring over every article, and continue to be there for Henry and for Diana and Jon.

2019 holds a great deal of promise for this community — join us in supporting the future of everyone living with Duchenne by donating to PPMD’s Cardiac Initiative before 12/31.

From our family to yours, warm wishes for a healthy and wonderful New Year!

David Hofstein
PPMD Board Member

P.S. Anyone in a family can join the fight to end Duchenne. Help fund cardiac research that we believe will help ensure future therapies that will be developed to address the health of our loved ones’ hearts. Donate before December 31 to PPMD’s Cardiac Initiative and your gift will be doubled until we reach our goal of $550,000.


Join Our Mailing List