11:00AM – 12:00PM ET

Live -- Opening Session: Mission Possible! What’s Next for Gene Therapy?

Speaker - Dr. Benjamin Yerxa

Speaker - Dr. Shanon Boye

LUXTUNRA was mission possible, but what’s next for gene therapy? This session will highlight the next generation of gene therapy approaches; how they can be used to save or restore vision; and how the approaches work and who can benefit from it. The presentation will provide an overview of gene therapy technology, what’s new, what’s in the pipeline, and what’s the Foundation’s role in moving retinal gene therapies forward.

1:00PM – 2:00PM ET

Living & Thriving Sessions (Concurrent)

Building a Life Beyond Retinal Diseases

Keynote Speaker - Paul Karos

Do What You Want To Do; Be Who You Want To Be!

Speaker - Neva Fairchild

Neva Fairchild, who has worked in the field of vision rehabilitation for almost 30 years, and lived with vision loss her entire life, will share tips, tricks, techniques, tools and resources for doing fun things, going places safely and independently, as well as how what you do at home can lead you into community involvement, work and/or your place in society. Don’t let diminishing vision keep you from doing the things you want and need to do.

Emerging Technologies

Speaker - Kris Saha, PhD

This session will highlight potential vision-saving therapies beyond gene therapy. The discussion will include updates on therapeutic tools such as genome editing and a novel minigene technology.

Guide Dog Readiness and International Guide Dog Federation Standards

Speaker - Margaret Winn, COMS

Speaker - Eric Rodman, GDMI

Have you or someone you know thought about getting a guide dog? Learn what it takes to be guide dog ready. This presentation will go through the required Orientation and Mobility skills necessary for obtaining a guide dog. There will be an introduction of how you and your Certified Orientation and Mobility Specialist can prepare you for guide dog readiness. The International Guide Dog Federation standards for obtaining a guide dog and the additional Leader Dog standards will be presented. Questions to ask yourself to determine if you are ready for a guide dog will be discussed. Learn about the lifestyle impact of using a guide dog as a mobility tool. An overview of the Leader Dogs for the Blind application process, admissions, programs and services will be included.

How Do You Want to Be Remembered? Easy Ways to Create a Legacy Gift for the Foundation

Speaker - John Corneille

How to Speed Read Without Vision

Speaker - Ed Summers

Reading is an essential skill for living and thriving in the 21st century knowledge economy. We must be able to read so we can work, play, learn, and keep up with rapid changes in the world around us. Those of us who are losing vision due to degenerative retinal diseases frequently struggle to read. But, it doesn’t have to be that way. Please join a blind professional with Retinitis Pigmentosa as he shares how he learned to read at a rate that is approximately twice as fast as most sighted people.

Is a Guide Dog Right for You?

Speaker - Zach Gittlen

Living Mindfully with Vision Loss

Speaker - Martel Catalano, Co-Founder, Executive Director, Beyond My Battle

How can we meet vision loss with greater curiosity and compassion? How can we find inner light in the midst of emotional darkness? This presentation explores effective mindfulness practices to help you live a life more at peace with vision loss.

My Retina Tracker Registry and Open Access Genetic Testing

Speaker - Karmen Truzpek, MS, CGC

Speaker - Kari Branham, MS, CGC

This session is designed to include a solid overview of genetics including, how mutations cause vision loss, why genetic testing and finding the disease-causing genes is so critical to developing treatments. This session will also provide information on the My Retina Tracker Open Access Genetic Testing program and the services available including genetic counseling.

Participating in Natural History Studies and Clinical Trials

Moderator - Todd Durham, PhD

Speaker - Jacque Duncan, MD

Speaker - Rick Ferris, MD

Speaker - Mark Pennesi, MD, PhD

This session will cover all the aspects of a human study and what someone should know about and consider before signing up. Topics will include inclusion and exclusion criteria, what to expect during study visits, open-label versus placebo-controlled studies, and why clinical trials are essential to the advancement of treatments and cures. This session will also summarize what clinical trials are going on in retinal degenerative diseases and provide updates on progress being made.

Understanding and Obtaining Social Security Disability Benefits

Speaker - Fay Fishman

In this session, we will discuss the basics of Social Security Disability. Topics include the Social Security’s definition of disability, Special Rules as they apply to Blindness and Low Vision, and the process for obtaining benefits.

Understanding the Basics of Inherited Retinal Degenerations

Speaker - Jacque Duncan, MD

Speaker - Rachel M. Huckfeldt, MD, PhD

In this session you will learn about the retina, how degenerative diseases cause vision loss, and what to expect when visiting a retinal specialist. This session will delve further into details about the retina and how vision loss occurs, and what approaches hold promise for saving and restoring vision.

4:30PM – 6:30PM ET

Live - Advancing Cell Therapies

Speaker - Kapil Bharti, PhD

This session is designed to include a solid overview of stem cells and how they can be used to save or restore vision. The discussion will include different applications and sources for stem cells, and details of the current work to move these treatments into human studies.

11:00AM – 12:00PM ET

Live - Science and Research Session

Speaker - Daniel de Boer

4:30PM – 5:30PM ET

Mix & Mingle Sessions (RP, Usher Syndrome, Stargardt, LCA, AMD, and Rare Diseases)

11:00AM – 1:00PM ET

Science Education Workshops: Disease-Specific Research and Clinical Updates

• AMD
• LCA
• RP
• Stargardt
• Usher Syndrome

11:00AM – 12:00PM ET

Live - Science and Research Session

Speaker - Daniel de Boer

1:00PM – 2:00PM ET

Live - Mental Health: Coping with Anxiety, Depression, and Stress Related to Vision Loss

Speaker – Ann Wagner, PhD, LP, ABPP

Moderator – Eric Ringham

People with vision loss often feel isolated, and may feel that isolation even more acutely with the social distance imposed by the COVID-19 pandemic. This presentation explores the unique dilemmas facing people with vision loss and those who serve as their helpers. It invites audience participation to discuss the critical need for support, to review education regarding emotions and what they tell us about our values, and to share some acceptance-based coping principles.

4:30PM – 6:30PM ET

Closing Session

Speaker - Gordon Gund