Each member of our Duchenne community has a personal reason for being here. Much like soldiers in an army, some of us have been drafted while others have us have enlisted – but we are all fighting together, battle after battle - within the same trenches.
Since my personal affiliation began with our community 25 years ago, I have considered it an immense honor to have been welcomed into the lives and personal spaces of so many families, and feel privileged to have played a part in this powerful community for many years. I believe that a career of service is about taking life personally; letting the lives that touch yours, touch you. Unlike helping and fixing and rescuing, service is mutual.
In the last two and a half decades, I have seen much change in our Duchenne and Becker community. We’ve won many battles, mapped unknown lands, conquered new territory, and have worked to gain strong strategic alliances. But I’ve also seen too many young soldiers and war heroes ‘killed in action’ while valiantly blazing new trails. And while urgency to win this war is no less intense today than it was 25 years ago, the armor, technology, and intel we have has increased exponentially.
As you know, we are in an era of unprecedented opportunity. Robust therapeutic pipelines bring great challenges for clinical trial infrastructure and recruitment, trial design, approval pathways, and reimbursement justification. Therapeutic successes yield urgent policy issues such as nationwide newborn screening, an insurance reimbursement framework for novel therapies, federal policies that promote autonomy and independence for new generations living decades into adulthood -- and outliving their parents, an amplification of the teen/ adult community voice in policy and research matters, and more. The opportunities are endless. The priorities are extensive. The moment is now.
As I have watched this exciting landscape change, I have felt a crushing sense of responsibility to you. To do more. To ensure that what we are doing is making the maximum impact possible. And while I believe strongly in the national infrastructure, community, and service program I had long helped to build and sustain – the efforts that were becoming intensely critical to me and my work needed more focused attention than I was able to devote to them in that role. So, out of a commitment to ensuring that my efforts on your behalf are always a ‘force multiplier’, I realized that it was time for me to move on from my role at MDA and take a deeper dive into Duchenne.
I once had the opportunity to meet a beautiful man from Ghana who had committed his life to serving others through Catholic Relief Services. After spending an evening at a ballpark together and swapping stories about our mission-rich lives, he departed and turned to me and said “I wish you more grease to your elbows.” I loved that. My grandmother used to always speak of putting more ‘elbow grease’ into your efforts; the imagery was vivid and the turn of phrase was wonderful. Yes, ‘more grease to our elbows’. That is exactly what I have been seeking; a place where my efforts would serve as a ‘force multiplier’.
While there are many communities that are dear to my heart, and many of those are also facing exciting therapeutic challenges, I was given a rare opportunity to join a strong team of policy and research experts; people who I have long collaborated with, long admired, and who share my deep personal passion for our mission. And even more – they are the people I want to serve with in the trenches. A powerful army who I had often been on the frontlines with as together we’ve won some landmark legislative and policy battles on behalf of our Duchenne community. So, when Pat asked me to join the ranks of the PPMD army, I accepted with great pride and enthusiasm.
In a sense, I looked around and found ‘more grease to my elbows’ so that I could ensure that my efforts truly do continue to serve as ‘force multipliers’ for our community.
I am honored and delighted by the opportunity to be joining such a dynamic and innovative team as this, am eager to immerse myself fully to help pave a path forward and address these policy issues head on, and am excited for new opportunities to work with each of you as we expand PPMD’s reach even further. Most of all, I am excited to work with each of you in the coming weeks and months as we grow this extraordinary army even further.
Borrowing from a comment from my friend and colleague Ryan Fischer, “Duchenne doesn’t stand a chance.” The PPMD community’s coming for you.