Here's how we've been making an impact in 2026:

• Broad Institute of MIT and Harvard: Finding Hope for Frizzle Co-Founder and President, Chrissy Green, was invited to speak at the Broad Institute to share the story of Frizzle, our organization's mission, and the promising science driving our gene therapy program.

• Rare Disease Day: Finding Hope for Frizzle Co-Founders Chrissy Green and Viviana Rodriguez attended the Viralgen Rare Disease Day 2026, where they both presented on Frizzle disease, mission, and hope through treatment development.

• American Society of Gene and Cell Therapy (ASGCT) 2026: Co-Founders Chrissy Green and Viviana Rodriguez attended ASGCT's annual meeting, one of the largest gatherings of gene and cell therapy scientists, clinicians, industry leaders, and patient advocacy organizations in the world. At ASGCT 2026:

  • Research & Advocacy Poster Presentations:

    • Frizzle Disease Research: Finding Hope for Frizzle presented a scientific poster highlighting organization-funded research on the FRRS1L disease conceptual model and caregiver burden assessment, helping advance understanding of the disease and its impact on patients and families. See poster here.

    • A New Model for Treatment Development: Our second poster highlighted the innovative, parent-led approach Finding Hope for Frizzle is pioneering—where patient organizations own, manage, fund, and serve as the IND sponsor for their own treatment development programs. This model helps protect treatment programs from being shelved or abandoned and keeps the focus on getting treatments to patients. See poster here.

  • Industry Partnership Panel:

    • Chrissy Green participated in a panel discussion highlighting how patient organizations and industry partners can work together to advance rare disease treatments. Drawing on Finding Hope for Frizzle's partnership with our gene therapy manufacturing partner, Viralgen, she shared how flexible business models and collaborative approaches can make treatment development more accessible for ultra-rare diseases.

• World Orphan Drug Congress: Chrissy Green participated in a panel discussion advocating for patient organizations to retain legal rights, ownership, and control over their treatment development programs. She emphasized how patient-led ownership can reduce the risk of promising therapies being defunded, delayed, or discontinued before ever reaching patients.

• U.S. FDA Rare Disease Framework Meeting: Chrissy Green participated in an FDA meeting to provide feedback on a proposed regulatory framework for rare disease drug development. Representing the perspective of a parent-led drug developer, she advocated for regulatory approaches that recognize the unique challenges of ultra-rare diseases and support the advancement of promising treatments to patients.

• Patient Advocacy Group (PAG) Collaboration: Finding Hope for Frizzle regularly meets with other parent- and patient-led advocacy organizations to share our experiences, provide guidance, and help others navigate the complex process of treatment development. We believe that sharing knowledge and supporting one another can help more rare disease programs succeed. If you are aPAG and want to meet contact us here.

• Rare Epilepsy Network (REN): As an active member of the Rare Epilepsy Network, Finding Hope for Frizzle regularly participates in meetings and collaborative discussions to advance awareness, research, advocacy, and support for individuals and families affected by rare epilepsies. Check out REN here.

OUR IMPACT GOES BEYOND FRIZZLE!

We believe that parents and patients deserve a seat at the table—and the opportunity to lead treatment development.

By sharing our experiences, advocating for change, and building meaningful partnerships, we hope to create a path that allows more rare disease organizations to take ownership of their treatment programs and bring life-changing therapies to the patients who need them.

We're not just working to change the future for Frizzle patients. We're working to change how rare disease treatments are developed for everyone.