CONNECTED 2025 || Tools to Thrive & The Patient Voice

Support & Self-Expression: Tools to Thrive with TED
4–5 PM PT | 7–8 PM ET

Session Description:

Facilitated by TED patient and Director of ART for the TED Community, Jacque Boogher, this session spotlights a variety of free, high-impact resources available to those living with thyroid eye disease. Leaders from Fighting Blindness, Dry Eye Foundation, Assistance Fund, and the Prevent Blindness ASPECT Program will each share how their services can support TED patients on their journey. Jacque will also highlight the no-cost offerings from the TED Community, and the session will close with a celebration of TED ART — featuring three TED artists and the healing power of creative expression. (No Q&A on this session)

Facilitator:

Jacque Boogher (TED patient & Director of ART for the TED Community)
Jacque is a TED patient and the Director of the TED Art and Creative Studio program for the TED Community. She is passionate about using art as a powerful tool for self-expression, healing, and connection with fellow TED patients. Her mission is to foster a supportive, creative space where individuals feel seen, heard and never walk alone.

Expert Panel:

Stephanie Marshall – The Assistance Fund (financial assistance)
Stephanie Marshall is the Director of Patient Advocacy for The Assistance Fund (TAF). At TAF, she collaborates with patient advocacy organizations to raise awareness of charitable patient assistance and to ensure TAF’s programs and services meet the needs of patients and caregivers. She also represents TAF on several coalitions and advisory councils to improve access to critical care and treatment for people living with life-changing conditions. She is a committed patient advocate who works tirelessly to put patients at the center of TAF’s culture.

Julie Grutzmacher – Prevent Blindness (ASPECT)
Julie Grutzmacher, MSW, MPH is the Director of patient advocacy and population health initiatives at Prevent Blindness. She was instrumental in creating the ASPECT patient engagement program which trains the visually impaired and blind community and their allies to be storytellers and advocates for change. She is dedicated to creating a space where diverse perspectives can be heard and individuals are empowered to discover and use their voices for advocacy.

Peter Ginsberg – Fighting Blindness (vision walks & mental health program)
Peter Ginsberg is the COO of Foundation Fighting Blindness, with responsibility for finance, corporate partnering, operations, professional outreach, and strategic opportunities. He is also on the management team for the Foundation’s venture capital fund; in this role, Ginsberg co-founded Opus Genetics, a patient-first gene therapy company that is now clinically-staged and publicly traded. Prior to joining the Foundation, Ginsberg led business development for four publicly traded biopharma companies and previously was a Wall Street Journal All-Star as a biotechnology analyst for Piper Jaffray.

Aidan Moore – Dry Eye Foundation (eye care & advocacy)
Aidan Moore is Executive Director and Co-Founder of the Dry Eye Foundation. He is a sympathetic listener, supporter, and advocate for dry eye patients, and he believes in using DEF’s platform to reshape the future for dry eye patients. He has been integral to DEF’s community support and education programs like the Dry Eye Helpline, Dry Eye Zoom Groups, Eye Drop Safety, Dry Eye in DC and more. His motto is “how can we help?”

The Patient Voice in TED: Shaping the Future Through Research, Advocacy & Access
5–6 PM PT | 8–9 PM ET

Session Description:

In this powerful session led by TED patient and podcaster Andrea Perryman, we explore how patients can influence the future of thyroid eye disease care — from research priorities to equitable treatment access and public advocacy. Andrea will be joined by leading voices in the field: Josie Cooper (Alliance for Patient Access), Alicia Barron (Infusion Access Foundation), and Dan Ignaszewski (National Alliance for Eye and Vision Research). Together, they’ll offer insight into how TED patients can step into these vital conversations and help shape a more inclusive and responsive future. The final 15 minutes will feature a physician-curated Q&A drawn from the Zoom Questions.

Facilitator:

Andrea Perryman (TED patient & podcaster)
Andrea is a patient advocate and healthcare leader passionate about improving access and outcomes for people living with chronic and rare diseases. Living with Thyroid Eye Disease herself, Andrea launched the Through Our Eyes podcast to connect and empower patients worldwide by giving them a platform to share their stories about living with TED. Visit Andrea’s website.

Expert Panel:

Alicia Barron (Infusion Access Foundation)
Alicia Barron, LGSW has more than 20 years of experience working with people affected by chronic illnesses and the healthcare providers who treat them. She cares deeply about the ways in which living with chronic illness impacts a patient in all areas of their life – from physical healthcare to psychosocial health. Knowing that better outcomes for patients require teamwork, Alicia builds relationships with everyone involved in patient care – healthcare providers, pharmaceutical companies, other patient organizations, elected officials, and of course, patients themselves.

Josie Cooper (Alliance for Patient Access)
Ms. Josie Cooper serves as executive director of the Alliance for Patient Access. At AfPA, Ms. Cooper has worked in stakeholder and clinician mobilization, developing policy and educational strategies to improve patient access to care. Ms. Cooper has a background in communications, research, grassroots organization and campaign politics. Ms. Cooper has worked at the state and national level advising political campaigns and public affairs clients on supporter and stakeholder mobilization. She has worked on major races across the country, from presidential campaigns to Senate and congressional races. Prior to joining AfPA, Ms. Cooper worked for a DC-based consulting firm and for a trade association representing biotechnology companies. Additionally, Ms. Cooper serves as an advisor to the Vision Health Advocacy Coalition, which advocates for patient-centered vision health policy.

Judy Hill is the Communications and Public Affairs Officer for the National Alliance for Eye and Vision Research (NAEVR) and the Alliance for Eye and Vision Research (AEVR). She spearheaded the launch of the #SeeWhatMatters campaign, driving brand recognition, coalition partnerships, and social media engagement that have transformed NAEVR/AEVR into a nationally recognized leader in vision research advocacy. Judy leads strategic communications, coalition development, and branding efforts that have significantly expanded the organization’s visibility and influence on Capitol Hill and across the research community. She also directs digital media, social engagement, and advocacy campaigns that connect patients, researchers, and policymakers, ensuring that vision research remains recognized as a national health priority. Through her work, Judy has helped transform NAEVR/AEVR into a well-known leader in vision research advocacy and a trusted partner in the fight to prevent blindness and preserve sight.

Dan Ignaszewski is the Executive Director of the National Alliance for Eye and Vision Research (NAEVR) and Alliance for Eye and Vision Research (AEVR), where he leads national advocacy to defend and expand federal vision research funding. With more than 20 years of experience in public policy, coalition building, and nonprofit leadership Dan has a proven record of building strong alliances to advance patient-centered health policy. In his role at NAEVR/AEVR, he works closely with Congress, federal agencies, industry partners, and patient organizations to ensure that the National Eye Institute (NEI) and the Department of Defense Vision Research Program (VRP) remain top national funding priorities. Under his leadership, the alliances have significantly elevated their visibility through high-impact initiatives such as the #SeeWhatMatters campaign, which mobilized the vision community and broader health coalitions to oppose restructuring proposals that would have undermined NEI’s independence. Dan has become a recognized voice for safeguarding sight-saving research, frequently engaging with policymakers, media, and professional societies to highlight the return on investment in federally funded science.

Q&A Curator:

Elena Genik, PharmD
Dr. Elena Genik is the founder of Soul Script and a holistic integrative pharmacist specializing in functional medicine, autoimmune conditions, and thyroid health. She combines her expertise in pharmacy with root-cause investigation, functional testing, nutrition, herbal medicine, and coaching to provide personalized, integrative care. Having personally navigated Graves’ disease and Thyroid Eye Disease, she is passionate about sharing her story and supporting others through resources like the Thyroid Love Club, an international support group she created. Her dream is for us all to go from surviving to thriving. Visit Elena’s website.