National Chapter Vision Webinar | Clinical Trials - December 7, 2024

The Foundation staff discussed the drug development process, ongoing clinical trials for inherited retinal diseases and dry AMD, and the importance of transparency and safety in clinical research. They also highlighted the experiences of individuals who have participated in clinical trials, emphasizing the potential benefits and challenges of these trials. The conversation ended with a Q&A session and a discussion on personal experiences with eye diseases and treatments.

[@Teetcbp]

Thank you for all you do. Rp patient and have been all over the world. Desperation to find something and cure everyone else ❤

[@melaniefurniss815]

I have been a part if clinical trials. It is a time commitment as it should be.

[@lisawilson3289]

I have retinitis pigmentosa also known as RP sure would like to see a cure one day for it. It’s so aggravating having to lie on people to help with daily things in life.😅

[@melaniefurniss815]

Thank you all for continuing to try and find a cure. I was diagnosed in 1993 with RP. I was in my early 30's. I am now 67 still praying for a cure. I had my DNA tested about 8 years ago. I put it on the FBlindness. I still do not understand the results. It was done at Emory in Ga.

[@aumemorial99]

Did you ever become fully blind? Or just limited vision?

[@Justin-ds5iy]

Love how they have comments hidden immediately that might be considered controversial. Those of us living with blindness should be brought into the conversation.

[@morganf774]

I have stargardts and ice been told my gene is ore being studied and I am hopeful to get in an upcoming trial. I'm in the registery. 🙏 🤞

[@TexasRox]

Content starts here: 48:57

[@ds_market]

Thanks

[@MohsinPeeran-k1z]

Thank you for all you do.. I have RP and PDE6B Gene Mutation: I have been searching for any research or trials. But so far no success. If anyone knows of any trials or research; would appreciate a link. My vision is now declining very quickly. Appreciate any referrals.

[@abbeybeach961]

Thank you ! 🙏🏼

[@ilyassbouamama2136]

Do you have rp? I was recently diagnosed myself

[@1125-k8r]

Thank you very grateful

[@daniellegavorski1199]

I was diagnosed with Stargardt Disease last summer 2024

[@arisnelymedina3524]

Hello, since I am with the retinol tracker, may I please have the website that I need to check for available clinical trials for myself. I seem to have a rare retinitis Pigmentosa with nystagmus. And, I would like to see if there is anything available for me I was not at the webinar, but, I did see it on KZbin after I received the email yesterday I did hear all the testimonies and, I really wish that I can get things done like that between my mom and I we have searched everywhere every state just to find some kind of treatment for myself we have gone to florida, massachusetts, pencil banana, and here in New york. We have also seeing those clinical trials where people say that you need to pay for them and I automatically say no because why would I need to pay for something that's supposed to treat me it's a clinical trial not a actual Pres but, if you can please send me something anything that can help

[@ej.74]

I have retinitis pigmentosa. I was diagnosed in mid twenty seventeen

[@BillKalbaugh]

When will I be able to receive this stem cell treatment' I have light perception only in my left eye and less than 5% in my right 20/40 vision.

[@kimlovejoy2710]

I jave after genetic testing Usher 2A