The Power of Advocacy

Quick Overview

The session highlights the importance of advocacy in the Angelman syndrome community, led by Ryan Fisher, COO of FAST. Fisher has extensive experience in rare disease advocacy and has been instrumental in advancing efforts at both local and federal levels. The session emphasises the need for community involvement in advocacy to influence drug development, care, and quality of life improvements. Fisher discusses the importance of engaging with Congress and federal agencies like the NIH and FDA to secure funding and support for Angelman syndrome research and treatment. The session also introduces the upcoming Patient-Focused Drug Development meeting with the FDA, encouraging community participation to ensure informed decision-making. The collaboration between ASF and FAST aims to balance immediate family support with long-term policy and research advancements. The session concludes with a call to action for community members to engage in both local and federal advocacy efforts.

The 2024 ASF Family Conference recently hosted a compelling session titled “The Power of Advocacy,” featuring Ryan Fischer, the new Chief Operating Officer of FAST (Foundation for Angelman Syndrome Therapeutics). Fischer, with over 15 years of experience in the rare disease advocacy space, shared insights into the critical role of advocacy in advancing drug development, improving care, and enhancing the quality of life for those affected by Angelman Syndrome (AS).

The Importance of Advocacy

Fischer emphasised that advocacy is not just a choice but a necessity for those affected by rare diseases. He highlighted that the journey of advocacy begins the day of diagnosis, as families become the voice for their loved ones. Advocacy, according to Fischer, is about influencing decision-makers, such as Congress, federal agencies, and pharmaceutical companies, to make informed decisions that benefit the community.

Engaging with Congress

One of the key focuses of the talk was the importance of engaging with Congress. Fischer explained that Congress holds significant power, particularly in terms of funding and legislation that can impact rare diseases like Angelman Syndrome. He shared the success of the inaugural Congressional Advocacy Day, where 65 advocates from 23 states met with lawmakers to raise awareness and push for policy changes. The result was the inclusion of Angelman Syndrome in draft report language, a significant achievement for the community.

Multi-Pronged Advocacy Approach

Fischer outlined a multi-pronged approach to advocacy, which includes engaging with both federal and state representatives. He stressed the importance of personal stories in advocacy, as they can lead to empathy and action from policymakers. The session also highlighted the need for a collaborative effort, with organisations like ASF and FAST working together to drive change.

Regulatory Engagement

The talk also covered the importance of engaging with regulatory bodies like the FDA. Fischer announced an upcoming Patient-Focused Drug Development (PFDD) meeting with the FDA, scheduled for January 29th, 2025. This meeting aims to provide the FDA with a deeper understanding of Angelman Syndrome and the community’s perspectives on emerging therapies.

Local Advocacy and Community Engagement

While the session focused on high-level advocacy efforts, it also touched on the importance of local advocacy. Fischer encouraged attendees to be advocates in their communities, engaging with local institutions, schools, and neighbours to raise awareness and improve day-to-day life for those affected by Angelman Syndrome.

Conclusion

The session concluded with a call to action for the community to join the advocacy efforts. Fischer and the ASF team emphasised that everyone can contribute, whether by participating in surveys, attending advocacy days, or engaging with local representatives. The power of advocacy lies in the collective voice of the community, driving change and paving the way for a better future for those affected by Angelman Syndrome.