Introducing Ryan Fischer

Dear friend,

When I took on my role as president at FAST last fall, one of the first promises I made to this community was that I would find a stellar operational leader for the organization— someone with experience running a nonprofit organization in the rare disease space. Today, I am thrilled to announce that I found that person, and he has agreed to join our team: Ryan Fischer, who will be coming aboard FAST as chief operating officer, starting April 1.

Ryan has spent the past 18 years helping to build one of the most well-respected rare disease advocacy organizations in the world: Parent Project Muscular Dystrophy (PPMD). When he started there in 2004, he was the third employee of an organization whose annual budget was $1.5-2m with an annual spend on Duchenne by Congress of $12m. He is now one of two executive deputies leading a staff of 28 employees, with an annual budget of $13m, and a Congressional spend of over $50 million on Duchenne.

“When we hired Ryan, we were drawn to his expertise in technology,” Pat Furlong, CEO of PPMD, wrote in a beautiful blog post today. “Ryan soon took on a leadership role in our advocacy efforts and made Duchenne a household name in Congress. He 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.” 

In his experience in rare disease patient advocacy, Ryan has done everything from setting up basic infrastructure to community engagement, especially around policy and legislation. He shaped and drove major pieces of legislation with congressional champions; led advocacy efforts resulting in increased federal Duchenne spending; grew the advocate roster from 30 advocates to more than 1000; established standardized advocacy training to prepare advocates to meet with members of Congress and federal agencies; led all policy trainings for advocates, including mock congressional meetings, seminars on effective personal storytelling, and sessions on how to communicate concepts to policymakers; and leading PPMD’s Annual Advocacy Conference— which he’s managed for 17 years, establishing it as the largest, longest-running rare disease advocacy conference in the country. In time, he took over supervision of the senior leadership team, including VP of Clinical Care and Education, VP of Research and Innovation, and VP of Community Research & Genetic Services.

In addition, he led the Duchenne community through the first-ever FDA advisory committee meeting for a new drug application, which involved: training community representatives to testify during the open public comment portion of the meeting; creating PPMD Connect, a national grassroots outreach program; creating a training manual to onboard volunteer Connect Coordinators; served as volunteer staff for World Duchenne Organizations (WDO), establishing relationships with 30+ patient advocacy groups worldwide; facilitated the creation of the first-ever patient-initiated Duchenne Draft Guidance for FDA and Industry; and galvanized creation and development of PPMD’s Patient Preference research initiative (BRAVE), including the first-ever patient preference study of Duchenne caregivers and patients.

In short, he became deeply experienced in (some might even say obsessed with!) the very things we need to build to support and enrich and turbocharge FAST’s Roadmap to a Cure.

Ryan will work in collaboration with me to establish, direct, and achieve the organization’s short-and long-term strategic goals and objectives across all operational areas, including general administration, programs, grants, and external relations. He will maintain and build effective relationships with key stakeholders, including Congress, regulators, pharmaceutical companies, other foundation leaders, and the broader rare disease advocacy community.

Together we’ll seek to build and execute advocacy and regulatory strategies (state and federal as well as global), in collaboration with leadership and any hired consultants; establish new programming related to patient-focused drug development, including social science research efforts aimed at eliciting patient and caregiver preferences for treatments and patient experience data; and work across the drug development paradigm engaging key stakeholders within ecosystem (caregivers, patients, health care professionals, researchers, regulators, payers, industry partners) and support legislation and policy priorities that can impact Angelman syndrome drug approval, drug access and overall industry appeal.

On a personal note, Ryan lives on Long Island with his husband and partner of 20 years. He’s a political junkie who loves history and, in a new development, birding! He’s also one of the most accessible and generous people I’ve met while working in this space.

All in all, he is a better candidate than I ever imagined I’d find for this role. Allyson, our Chief Science Officer, likes to say we’re unicorns looking for other unicorns. Ryan Fischer is one, and this season we are incredibly lucky to welcome him to our team.

Warmly,

Alana Newhouse President, FAST