As I write this, something is inevitably overcooking in my oven, the turkey may not be defrosted, and we are running low on Diet Coke. But amidst the craziness and chaos of the holiday, I wanted to take a moment to say thank you. Thanksgiving is always one of my favorite holidays because it’s just about being together, sharing what we are grateful for, and food. Lots of food. Followed by lots of dessert. And at the top of the list of what I’m most grateful for, is YOU.

I cannot believe that the end of 2018 is so quickly approaching. This year has flown by in the blink of an eye, and yet it has been another tumultuous year with the high highs and low lows our Duchenne community has come to expect. What we at PPMD never take for granted, though, is the ability of this community to work together, unite, and hold each other up amidst the rollercoaster of emotions Duchenne takes on. For almost 25 years, families like yours have supported PPMD and worked beside us as we change the landscape of this devastating disease. This community drives the mission of PPMD and for that, I could not be more grateful.

If you’re like me, this time of year always brings with it a renewed sense of hope, of possibility, of promise. There has never been such momentum happening in Duchenne research.

Since launching our Gene Therapy Initiative in 2016, we are seeing promising results in the incredibly brave children participating in the various gene therapy trials currently underway. It’s hard not to get excited when you see video footage of kids, not just walking up the stairs, but running up them!

Our strides in policy and the influence we are having in Washington, D.C. are mind blowing. In fact, we are regularly being approached by other organizations in the rare disease community for advice, for guidance on how to dramatically change the federal landscape in their disease space the way we have done in Duchenne.

Never has the importance of care – for people living with Duchenne, for Duchenne carriers, for the entire family – been more embraced by the clinical community. With over 20 Certified Duchenne Care Centers and updated Care Considerations published earlier this year, families like yours are insisting that their child receive the best care available and helping educate physicians and healthcare providers in the process.

When I look ahead at our ‘to-do’ list for 2019 it is exciting, innovative, and ambitious. PPMD is the leader in the Duchenne community because we persist –we know we must continue to ask questions, demand answers, and explore the complexity of this disease from every angle.

This momentum in our community isn’t just because of progress made by researchers, pharmaceutical companies, or Congressional leaders. This momentum, this moment is because of YOU.

Like PPMD, you want one prayer answered, one wish fulfilled, perhaps more than any other thing on your list – we all want to end Duchenne.

This holiday season, your PPMD family wants to thank you for always supporting our mission. Because you have joined the fight, because you help fund the fight, we will fulfill our mission. We will end Duchenne.

Thank you for being the heart of PPMD. Tonight, at Thanksgiving dinner, my family and I will raise a glass to all of you, our extended family, in gratitude of your undying passion and support.

Happy Thanksgiving!

Pat

P.S. Take a moment to share on Facebook what your heart is grateful for this holiday  season — a time of joy, a time of celebration, and a time of family.