New website, renewed commitment to fight Duchenne...

  Posted on June 19, 2017

We've expanded our services in many ways due to the generosity and support of our donors. We've been able to assist families with securing $17,000 worth of necessary medical equipment, mentored many newly diagnosed families, testified in support of legislation that will help terminally ill patients get access to experimental therapies, served on pharmaceutical advisory boards, and advocated in Washington, DC for faster drug approvals.  And we’ve expanded our LHF team by adding Dawn and Justin Rezkalla, both DMD parents that joined our team after they received a Duchenne diagnosis for their son, Alex. These two highly motivated people hit the ground running and have added so much value to what we do, and they are just getting started.

As I look back from the beginning to now, I am moved beyond words thinking about what we've accomplished together--the support base we’ve built, the money we’ve raised, the research we’ve supported, the partnerships we've built, and the families we’ve helped.  Those living with and those who love someone living with Duchenne are making unimaginable sacrifices—traveling across the country to obtain the best care for their children, traveling to other states to participate in clinical trials once a week, leaving successful careers behind as they rearrange family priorities to care for their children, fighting through months of insurance denials and appeals to get their children the treatments they need, and sadly, often burying their children when Duchenne decides it’s time.

Why a new website? Simply put, the best way to tell our story is to do it from our children’s perspective.  We felt as if we needed a website that did exactly that.  Our website now gives all a visual progression of this horrible disease and tells their story. We also highlight many local boys and families living with Duchenne to give voice to their Duchenne journey. We also wanted to give the DMD community as many resources as we could find out there to help them get the information and assistance they need. So, we did exactly that, and will continue improving in this area.

Our ultimate goal is simple: leave Duchenne better than when it found us, and maybe have a little fun doing it. Jackson and Alex, and all boys living with Duchenne are the strongest, bravest humans I've ever met.  They greet each doctor visit as an opportunity to catch up with their hospital staff friends despite the needle sticks and endless tests, they meet each loss of function with determination, they enroll in clinical trials because they want a treatment not only for themselves, but for all boys with Duchenne. We at LHF feel privileged to serve these little heroes and their families.

So please, peruse our new website and check back often as we continue to provide the best information and resources available, and keep you updated on what we’re doing or to sign up for one of our events.  Oh, by the way, you'll notice that we’re slightly smitten with our logo so we’ve created new LHF icons to guide you through our new site.  Hope you enjoy him in his various costumes as much as we do!

Kelly Maynard, President