We are thrilled to welcome the newest addition to the PPMD team, Jodi Wolff, PhD, who joins us as our Chief Program Officer! Jodi brings with her a wealth of experience and an unwavering passion for advocating for individuals with rare diseases, particularly those with neuromuscular conditions such as Duchenne and Becker muscular dystrophy.

Jodi’s commitment to rare diseases has been longstanding and multifaceted. From her early adulthood roles as a camp volunteer for the Muscular Dystrophy Association (MDA), then as a social worker in pediatric and adult neuromuscular clinics, to her impressive tenure at MDA’s national office, she has continually immersed herself in efforts supporting individuals living with neuromuscular conditions.

Advancing seamlessly into leadership positions at rare disease biotechs and working with gene therapy startups, Jodi has been at the forefront of integrating the patient voice into every stage of drug development. Notably, Dr. Wolff has spearheaded the development of disease-specific quality of life instruments for rare disease clinical trials, led patient advisory boards to inform trial design, collaborated with clinical development teams to ensure trials reflect patient insights and preferences, and has worked in several rare diseases to establish and support pre-competitive consortiums, data sharing, and registries.

Her academic pursuits have been equally focused on understanding and enhancing the lives of individuals with neuromuscular conditions, culminating in her doctoral research exploring the challenges of transitioning to adulthood for this community, including barriers to healthcare, education, independent living, and employment.

Beyond her professional achievements, Jodi is actively involved in advocacy initiatives, serving on committees for the American Society of Gene and Cell Therapy, Becker Education and Engagement Day, PPMD’s Certified Duchenne Care Center Program, and PPMD’s Duchenne Drug Development Roundtable. Her commitment to the rare disease community is further demonstrated by her involvement in dedicating her personal time to organizing retreats for young people living with neuromuscular conditions in Arizona, where she resides.

As our Chief Program Officer, Jodi will play a central role in shaping and advancing PPMD’s mission to end Duchenne. Her wealth of expertise, coupled with her profound passion and dedication, makes her an invaluable addition to our team. Please join us in extending a warm welcome to Jodi! Together, we will continue to make meaningful strides in the fight for every future and improving the lives of all those affected by Duchenne and Becker.