Saving Sight For Those With Rare Genetic Diseases | A Tribute to Robert "Bob" Bellizzi | Founder of The Corneal Dystrophy Foundation

Welcome to another enlightening episode of the "Care More Be Better" podcast, where we dive deep into the challenges faced by those with rare genetic diseases. This session features a compelling interview with Robert (Bob) Bellizzi, the founder and Executive Director of the Corneal Dystrophy Foundation. This episode was recorded in 2021, and is being re-published as a tribute to Bob since his passing quietly at home on April 8, 2024, 5 days before he would have turned 93 years old.

About the Guest

Bob Bellizzi founded the Corneal Dystrophy Foundation in 1998, originally starting as a grassroots patient-to-patient support group called Fuchs' Friends. His organization has since grown to serve around 3,000 members across over 150 countries, providing a much-needed platform for patient support and information exchange on corneal dystrophies.

Key Discussion Points

• Diagnosis and Personal Journey: Bob shares his personal journey of being diagnosed with Fuchs' dystrophy, detailing the initial challenges and misconceptions around the condition due to the lack of accessible information at the time.
• Advancements in Treatment: The conversation highlights the significant advancements in treatment methods for corneal dystrophy, particularly the shift towards less invasive procedures that aim to reduce the risks of infection and rejection.
• Patient Advocacy and Support: Bob discusses the evolution of Fuchs' Friends and how the community's active engagement with specialists has propelled faster adoption and refinement of new surgical techniques globally.
• Future Outlook: Reflecting on the future, Bob expresses optimism about ongoing research and clinical trials aimed at further improving treatment outcomes and possibly avoiding surgery altogether through innovative approaches like gene therapy and specialized drug treatments.

Eye sight can change at any age or stage of life. Annual checkups help identify potential sight or health issues, and should be considered, even if you don't have poor eyesight.

Memorable Moments

• The Power of Community: One touching story shared involves the rapid response and collaborative effort to treat a five-day-old infant diagnosed with corneal dystrophy, showcasing the community's ability to mobilize and provide critical help in urgent situations.
• Challenges with Statistics and Awareness: Bob clarifies the prevalence of corneal dystrophy, discussing the variations in statistical data and the general lack of awareness within the medical community, which often leads to misdiagnosis or delayed treatment.

Measuring Success

Bob shares insights into measuring the success of his nonprofit efforts, emphasizing the importance of community recognition and the respect of medical professionals as key indicators of their impact.

How to Connect and Support

Listeners interested in supporting or learning more about corneal dystrophies can connect through the Corneal Dystrophy Foundation's website at CornealDystrophyFoundation.org, which also provides links to join Fuchs' Friends support groups.

Final Thoughts

As we wrap up this insightful conversation, we are reminded of the critical importance of advocacy and support in the realm of rare diseases. Bob's parting advice urges everyone not to dismiss changes in vision as normal aging but to seek expert advice, which could make a significant difference in outcomes.

For those looking to dive deeper or contribute to this cause, visit our Action Page at CareMoreBeBetter.com. Together, we can spread awareness and support those facing these rare but impactful challenges.

Transcripts + Complete Blog: https://caremorebebetter.com/saving-sight-with-robert-bellizzi-the-corneal-dystrophy-foundation