This year. This Thanksgiving. How did we get here?

This year has tested our will, our resilience, and our courage.

I still have a turkey in the oven and dessert in the fridge, but my house is quiet. My table is smaller and the heaviness of our reality more palpable. However, the gratitude I feel for this community is more profound.

The last nine months have been like nothing we have ever experienced. They’ve left us with constant uncertainty and extreme vulnerability. But, this time has also brought a renewed sense of hope and commitment to this community. In fact, I believe we are truly stronger because of it.

As we plan ahead for 2021—and the initiatives that bring progress to our community—we look back to the actions we’ve taken, to ensure that no matter how unpredictable our world gets, we keep moving forward.

This year has truly been unprecedented. Not only have we faced a global pandemic, but we are feeling the effects of its subsequent financial crisis. Despite the obstacles, PPMD has been a light for the Duchenne community, working to support urgent needs during the pandemic while simultaneously moving ahead with all the facets of our mission.

• We celebrated the approval of the fourth Duchenne therapy, NS Pharma’s VILTEPSO, a treatment amenable to exon 53 skipping, and joined virtually for a historic PPMD Annual Conference. Over 1,000 individuals logged on for four full days of content, engaging differently than we’re used to, but happy to be together nonetheless.
• This year PPMD funded $3.5 Million in research, propelling several new projects forward and evaluating many more. The Duchenne Registry and Duchenne Outcomes Research Interchange have grown tremendously in the past year, building a strong infrastructure to collect vital data that further defines the trajectory of Duchenne.
• PPMD’s advocacy efforts made a significant impact this year, with 23 senators and 68 House members signing on to support Duchenne-specific priorities on the BENEFIT Act. We also advocated for additional Department of Defense funding resulting in an increase of $7 million. PPMD also joined with dozens of other patient advocacy organizations to urge Congress to protect the needs of immunocompromised patients during the pandemic.
• Our Care team played an instrumental role in response to community concerns regarding COVID-19, hosting seminars and creating a dedicated resource center. We accredited our 28th Certified Duchenne Care Center, while two centers have received Adult Center accreditation as well.
• Community is at the heart of PPMD, and we’ve continued to engage families virtually through our End Duchenne Tour stops, the growth of the PAAC, new social gatherings for our tweens with Duchenne, a Connect group for siblings, and more robust programming and resources for our newly diagnosed families.

This Thanksgiving I cherish what we have in each other.

We are here for each other in the good times and the bad. We support each other, we sacrifice for each other, and together we move forward. The future is unknown, but today’s steps will unlock tomorrow’s breakthroughs.

More than ever, I am thankful for each of you. To the families, staff, board, and partners of PPMD who have continued engaging in our essential work and showing your resilience, even in the face of an incredibly challenging year: thank you for your support, your inspiration, and your love.

Happy Thanksgiving,

Pat Furlong
Founding President & CEO

P.S. Take a moment to share on Facebook what you are grateful for this year.