Blind Ambition Challenge
“It has taken me years to come to terms with the realization that I will lose my eyesight. I have leaned heavily on my family and friends for support and for that I am grateful.
Recently, I decided to be more open in the hope that my voice will raise awareness and support further research to help all those who are visually impaired. I am launching the Blind Ambition Challenge as a springboard for my efforts.”
-Alec Yeaney
Background
In the Spring of 2014, the Yeaney family--Jackie, Eric, Connor (28), Carissa (25), and Alec (22)--learned that the strange vision loss that Eric was experiencing was due to a rare genetic eye disease known as Central Areolar Choroidal Dystrophy (CACD). Eric’s brother, Steve, and late father, Lester, both also have the dominant genetic mutation.
In December 2014, the Yeaney family had their three children tested for the dominant gene. The youngest, Alec (15 at the time), is the only child to have the mutation, and therefore also has CACD.
CACD is a rare type of age-related macular degeneration caused by a single base substitution mutation on the PRPH2 gene that affects the generation of photoreceptors in the macula. As one gets older with CACD, the mutation causes you to lose more and more of your central vision as the cones die off.
Eric began to have blindspots in his late 30’s and they have continued to grow slowly over that last 15+ years. Today he can no longer drive or recognize faces. He uses voice technology for many of his everyday activities. There is currently no cure or way to slow down CACD. However, there is much hope that gene therapy and stem-cell research will be able to help within the next 5-10 years.
Image of Eric's retina in 2014--black spots are where the cones have died off.
#BAchallenge
Launched November 2021
People painted their (or someone else's) fingernails--while blindfolded.
They then posted a short video (<30 sec) of the end result on social with hashtag #bachallenge and challenged five others to do the same within 24 hours.
We did this to:
- Challenge people’s senses
- Help folks better understand how difficult day-to-day life can be without eyesight
- Increase awareness about blindness and retinal eye disease
- Raise funds to further research in finding cures for retinal disease
DONATions
We raised over $7000 for the Foundation Fighting Blindness. You can still donate through this link:
https://give.fightingblindness.org/bachallenge
The Foundation was founded in 1971 to drive the research that would lead to preventions, treatments, and vision restoration for the spectrum of degenerative retinal diseases, specifically macular degeneration.
They are the world’s leading private funder of retinal disease research. That funding has been a driving force behind the progress toward cures, including the identification of more than 270 genes linked to retinal disease, and the launch of 42 clinical trials for potential treatments.
