February 16, 2023 / Community

An update about our team

I’m writing to share that Ryan Fischer is transitioning off our team next month as PPMD’s Chief Advocacy Officer.

Ryan joined PPMD in 2004. During his initial interview, I mentioned that we were looking for people who would sink their heart and mind into Duchenne, people who would be passionate about this community and focused on change, people who would help us move the needle – accelerating research, driving therapy development and, with every step, listen and elevate the voices of people and families with Duchenne. After 18 years, I can’t think of a better way to describe Ryan’s impact on our organization and our community.

Ryan is everyone’s friend, mentor, and person to lean on. For me, he is an anchor, a listener, a doer, and a dear, dear friend.

When we hired Ryan, we were drawn to his expertise in technology, especially because Kim and I were woefully lacking those skills. That was the easy part. Along the way, we learned about his experience in a congressional office during college and he asked to participate in PPMD’s advocacy efforts. In the spirit of ‘grow your own tree’, Ryan soon took on a leadership role in our advocacy efforts and made Duchenne a household name in Congress. He helped craft major pieces of legislation and taught families how to use their voices to make change.

Ryan not only joined the community, he became a leader in the community and within PPMD, leading efforts to ensure people with Duchenne, Becker and females with dystrophinopathy are listened to and heard, that their voice resounds far and wide.

Ryan is our people, our us.

Ryan will remain in the rare disease space, joining a nonprofit called the Foundation for Angelman Syndrome Therapeutics (FAST) as its Chief Operating Officer. While his last day on staff is March 10, he will continue to be part of our PPMD community, advocating to make sure data (patient and caregiver preferences) drive drug development and regulatory decision-making in Duchenne and other rare diseases, and plans to join PPMD’s Board of Directors in 2024.

He won’t be far. And he has every family in his heart and always will. If you are attending PPMD’s 2023 Advocacy Conference in Washington, DC next month, please join us for a toast to celebrate Ryan on Monday, March 6.

My oldest brother ended every call with ‘bye for now’. The phrase conveyed the tenderness of goodbye, a lasting connection, and the assurance that we will see each other soon.

Bye for now, lovely Ryan. I have you on speed dial.

A message from Ryan to the PPMD community:

It is hard to describe the gift it has been to have spent nearly 20 years in service to the Duchenne community – “life-changing” comes to mind. When I think back to meeting Pat Furlong and Kim Galberaith for the first time those many years ago, I can still remember how I felt learning about PPMD and the Duchenne community. I immediately wanted to join the movement that was being created. I came to realize it is more than just a community. It is a force, a village of love and acceptance, and the definition of resilience. It continues to be that and more today.

Along the way, I grew up alongside families who I now consider extended family members. Our relationships don’t center around Duchenne; they center around a sincere connection, a friendship.

I begin this next chapter with the Foundation for Angelman Syndrome Therapeutics (FAST) in service to the Angelman Syndrome community. Like the Duchenne community, they are fiercely determined to change the status quo. Please know that organizations like FAST see you; you’ve inspired them, and they admire what YOU have accomplished to advance research and drug development. I hope and pray I can serve them well.

No one ever truly “leaves” the Duchenne community (ask my friend Annie Kennedy); this community becomes a part of your soul. I am grateful for the impact you have had on my life. Over the past two decades, I have watched you move mountains to create change, refusing to accept – “nothing can be done” – as a response to the diagnosis.

I am lucky to have played a small part in the progress we see, yet I still know there is much work yet to be done to ensure every person impacted by Duchenne and Becker reaches a better quality of life. Therefore, I plan to join the PPMD Board of Directors in 2024. The mission of this organization is near and dear to me and always will be. The team at PPMD is made up of the best and brightest – integrity, honesty, and compassion come second nature to them. I know they will continue to shine, for they see their service to the community as much more than a “job” – they believe in the mission with every fiber of their being, and like me, they believe in you.

Pat, you have been so much more than a boss to me. You’ve been a mentor, a friend, a family member, and a confidant. I am lucky to know you, for you have changed my life for the better. I hope you know what you mean to me and the role you play in my life. This is not the end; it is just the start of something different. Thank you for being. I will always be a phone call away.

Contact PPMD

We are grateful that after 18 years of incredible mentorship and contributions to our community, Ryan leaves PPMD with an outstanding team of dedicated and passionate people that continually work to assist families and advance our mission to end Duchenne.

  • For advocacy questions, please do not hesitate to connect with PPMD’s Director of Advocacy, Lauren Stanford at lauren@parentprojectmd.org.
  • For questions regarding community connections, please contact PPMD’s VP of Development & Community Engagement, Nicole Herring at nicole@parentprojectmd.org.
  • For questions regarding access and coverage, please contact PPMD’s Community Engagement Coordinator, Brian Denger at brian@parentprojectmd.org.

Remember, you are never alone on this journey. The PPMD team is always here to answer your questions, connect you with the community, and provide you with personalized support to help navigate the concerns and decisions that are part of Duchenne. Visit the PPMD For You page to schedule a one-to-one meeting with a member of our team or email careteam@parentprojectmd.org with more information on how we can best support you.

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