Gordon Gund, who’s held in extremely high esteem by people inside and outside the Foundation Fighting Blindness (FFB), has been completely blind for decades. He lost his eyesight to a disease called retinitis pigmentosa in his thirties. Not that it slowed him down much. Among other accomplishments, he’s been a financier, venture capitalist, sports-team owner and sculptor. And, of course, he’s a co-founder of FFB and its chairman of the board.
But Gordon fought hard to keep his eyesight. It’s one of the reasons he, his wife, Lulie, and several other families established the Foundation back in 1971, when, in essence, there was no retinal-research field. Forty-four years later, the $600 million FFB has raised to help create that field, and fund researchers worldwide, is beginning to pay off.
In a recent interview with CNBC’ s Brian Sullivan, during a tech-investor conference in Nantucket, Gordon explained why this is such a crucial time in retinal-research history. You can see that interview here, where the FFB discussion begins at minute 2.
Long story short, the Foundation’s investments in early- to late-stage research have helped facilitate the recent FDA approval of the Argus II, or “bionic retina,” and a retinal-disease gene therapy that has restored vision in 100 children and young adults. FDA approval of the latter would make it the first marketable gene therapy in the world targeting a retinal disease.
It would also be just one of many treatments needed to take on more than a dozen retinal diseases affecting tens of millions of people worldwide.
So the other highlight of Gordon’s interview, starting at 4:30, is his pitch for The Gordon and Llura Gund Family Challenge, a matching challenge which capitalizes on the momentum FFB has helped create by raising urgently needed funds for the research that remains.
Through June 30, 2016, Gordon explains, qualifying donations of $25,000 or more will be matched. The challenge was launched last summer and has, thus far, brought in $30 million. With the Gunds’ match, that’s $60 million—all of it going to research.
But the goal is to raise at least $100 million. With another nine months to go, Gordon, Lulie and the Foundation plan to do just that.
Steve is highly respected for his expertise and tireless commitment to finding treatments and cures for vision-robbing retinal diseases. 
As the Foundation's Senior Director of Communi-cations, Ben writes science and research articles for the Foundation’s website, newsletters and Eye on the Cure blog.
My 94 yr old father in law is almost blind now due to Macular Degeneration. He is completely blind in one eye and now the other one is almost gone. Recently my 62 yr old husband was told by his eye doctor that he is starting to show signs of it as well. He advised him to start taking AREDS 2. Thus how I found this website. I’m very happy that this foundation exists to help all the people who in the past, present, or future have eyesight diseases. Thank you very much! Keep up the good work!
Hello, I am James Geiger, a 14 yr old diagnosed with RP. Ever since I’ve been scouring the internet far and wide, looking for information, I’ve been following the FFB for a while now. I am so glad to see that there is hope. I was absolutely incredulous at the sight of the Argus II. I read the article. I am also curious about the gene therapy.
Hello my name is Virginia I’m 32yrs old a mother of 2. I was diagnosed with uveitis in my left eye in 2010 I was 27yrs old then. In 2014 I got Uveitis in my right eye. Now having both eyes with Uveitis I was referred to UCLA Jules in Los Angeles in March of this year 2015 were I find out I have Retina Pigmentosa in my left eye. I have been looking ALL around the internet for some info answers. I love that there is people out there doing something about this. I pray every night that God will slowly take my vision. thank you for listening.
Hi Virginia, The National Eye Institute in Bethesda, MD has an entire section dedicated to uveitis. See the following link:
https://nei.nih.gov/health/uveitis/uveitis The person you should contact is Dr. Robert Nussenblatt. Here is a link to his web page:
https://nei.nih.gov/pressroom/nussenblatt
what is Argus II. will it help to see again for RP patient in night also
For information on the Argus 2, please see the following link:
http://www.blindness.org/blog/?s=ARGUS&submit=Search
I am 19 years old and suffering from RP,
Can you please help us and do something so that my vision can be retained / improved.
Very anxiously awaiting for your positive reply.
MANY THANKS AND BEST REGARDS
MR HASHIM SHAH
16, 1st FLOOR, FAIZ-E-EDROOS
371/373, NARSHI NATHA STREET
MASJID (WEST)
MUMBAI 400 009, INDIA
TEL : 00 91 22 23455582 / 00 91 22 23476116
MOB : 00 91 9820182598
E. MAIL : gainscom@outlook.com
You should know that there are three inherited forms of RP: recessive, dominant and X-linked. If you are not sure which type you have, you should ask your ophthalmologist. For information on inheritance types, please see the following web link to download a PDF document on inheritance:
http://www.blindness.org/sites/default/files/inheritance_of_retinal_degeneration_-_july_2012.compressed.pdf
You should also consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed can be searched to identify any research that is being conducted. With a molecular diagnosis, you may qualify for one or more of the gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
Whether your disease gene is identified or not, you should still consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
https://www.myretinatracker.org/
It may also be helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information.
please doctor help me ..me my brother and uncle retinis pigmintosa treatmint . Please contact me my number +923038359321 email nawaz_gul@ymail.com
You should know that there are three inherited forms of RP: recessive, dominant and X-linked. It sounds as though you might have the X-linked inherited form of RP, since only males are affected. If you are not sure which type you have, you should ask your ophthalmologist. For information on inheritance types, please see the following web link to download a PDF document on inheritance:
http://www.blindness.org/sites/default/files/inheritance_of_retinal_degeneration_-_july_2012.compressed.pdf
You should also consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed can be searched to identify any research that is being conducted. With a molecular diagnosis, one may also qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
Whether the disease gene is identified or not, you should still consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
https://www.myretinatracker.org/
It may also be helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information.
I have RP recently diagnosed.Iam 37 yrs old.Finding it difficult to see in the dark.Somehow managing in the dark places.Help me with lastest update.I have fear because it is said to be genetic disorder.
You should know that there are three inherited forms of RP: recessive, dominant and X-linked. If you are not sure which type you have, you should ask your ophthalmologist. For information on inheritance types, please see the following web link to download a PDF document on inheritance:
http://www.blindness.org/sites/default/files/inheritance_of_retinal_degeneration_-_july_2012.compressed.pdf
You should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed can be searched to identify any research that is being conducted. With a molecular diagnosis, one may also qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
http://www.blindness.org/sites/default/files/genetic_testing_booklet_201311rev.pdf
Whether the disease gene is identified or not, one should still consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
https://www.myretinatracker.org/
It may also be helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information.
I am a 42 yr old teacher and my sister is a 33 yr old doctor. We both were diagnosed with RP within the last few years. We are fortunate that we have retained our sight thus far but as we know this will degenerate. Thank you for the attention and research into this field. You, sir, are an inspiration! I am praying that there will be progress and we will retain our sight for our entire lifetime.
Hi. Is there any help for me please?!! I would like to study for my phd but with RP, I am feeling very upset. I need your help if any.
Thanks
You should know that there are three inherited forms of RP: recessive, dominant and X-linked. If you are not sure which type you have, you should ask your ophthalmologist. For information on inheritance types, please see the following web link to download a PDF document on inheritance:
http://www.blindness.org/sites/default/files/inheritance_of_retinal_degeneration_-_july_2012.compressed.pdf
You should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed can be searched to identify any research that is being conducted. With a molecular diagnosis, one may also qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
http://www.blindness.org/sites/default/files/genetic_testing_booklet_201311rev.pdf
Whether the disease gene is identified or not, one should still consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
https://www.myretinatracker.org/
It may also be helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information.
My daughter (30 yr old) is suffering from retinitis pigmentosa for ls ten yr. She has lost the vision.Please suggest some treatment.
Hi Dr. Singh, Your daughter should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed can be searched to identify any research that is being conducted. With a molecular diagnosis, one may also qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
http://www.blindness.org/sites/default/files/genetic_testing_booklet_201311rev.pdf
Whether the disease gene is identified or not, she should also enroll in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials and helps connect patients to trials that are recruiting. For more information on “My Retina Tracker” please see the following web link:
https://www.myretinatracker.org/
It may also be helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information.
I hope you find this information helpful. Please let me know if there is anything else I can help you with.
My neice has recently been diagnosed. Is there a listing, web site,or directory of the doctor’s that are conducting trials in gene therapy?
Thank you in advance for your assistance in this matter.
The website: http://WWW.CLINICALTRIALS.GOV is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information.
Am suffering from RP since around 6 years now. My age is 39.. am only left with the centre vision..
Kindly keep me updated about any treatment.
thanks..
keeping fingers crossed
Hello. Not sure what or how I ended up reading his article. I find myself heavily engrossed and excited. My daughter was diagnosed at age 19 in her Freshman year in College. She is now 27 years and 8 months. Her life like others has changed dramatically. She has since dropped out and found herself severely depressed. She has been seeing Specialists but no treatments nor cures. I’m Excited for what seems like may be a breakthrough. However in the mean time , is there any directions or treatments out there that maybe beneficial for her or others like Her?
Sorry I didn’t mention she has RP. With little to no night Vision and 40% of her central vision no perifial.
Your daughter should consider genetic testing to try and identify the mutant gene responsible for causing the disease. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. With a molecular diagnosis, one may also qualify for gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
http://www.blindness.org/sites/default/files/genetic_testing_booklet_201311rev.pdf
Whether the disease gene is identified or not, one should still consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
https://www.myretinatracker.org/
It may also be helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information.
THERE ARE SO MANY PEOPLE BEGGING FOR HELP TO RESTORE VISION , I TOO HAE RP AND AM AFRAID OF THIS DISEASE AND THE LOST OF INDEPENDENCE. I AM A 68 YEAR OLD FEMALE WHO HAS RP WITH PERIPHERAL AND CENTRAL DETERIOATION IN THE RIGHT EYE AND PERPHERAL DETERIOATION IN THE LEFT EYE. I NOW CONSIDERABLE HELP WALKING . DARK PLACES ARE TERRIBLE AND I STOPPED DRIVING NOW FOR A YEAR AND A HALF. I AM SEARCHING OUT FOR HELP AND WOULD LOVE TO DO WHATEVER POSSIBLE TO GET BACK EYESIGHT AND OF COURSE FOR THE FUTURE OF MY 3 CHILDREN: DAUGHTER-47, DAUGHTER-43, AND SON-37. THANK YOU AND GOD BLESS YOU.
CHRYSANNA FONTENOT ATTALES
My husband have glaucoma is their any help please
My 18 year old son Justin Masotti became blind in June of 2016 due a bad seizure which was caused by Brain Cancer.
Justin is now getting better. No seizures. The blindness is due to damage to the optic nerve
Will stem cells help Justin?
Dear Mike,
Stem cell therapy is currently being evaluated for possible use in optic nerve damage. The research is slowly moving towards the clinic but will probably not be ready for clinical trials for a few more years. Dr. Dong Chen at Schepens’ Eye Institute is currently working in this area. To read more about his work, please see the following web link: http://www.schepens.harvard.edu/research-storychen/dong-feng-chen-md-phd/research-story.html