Founding Usher 1F Collaborative
After Melissa and Elliot Chaikof learned that their daughters had Usher 1F, Melissa became involved with the Usher Syndrome Coalition and quickly learned that while research existed for other types of Usher syndrome, there was currently no research for Usher 1F. They knew that they would get left behind if there was no patient organization advocating for, and investing in, medical research.
Melissa writes, “I am proud of my daughters for moving on, living their lives to the fullest extent possible despite living with the weight of diminishing vision. I still have to fix it, though. I have to help them shoulder that weight. I could not and cannot sit back and do nothing and watch it happen, leaving it to others to maybe do something.”
To take control, the Chaikofs hired attorneys, formed Usher 1F Collaborative, applied for 501c3 tax exempt nonprofit status, deposited $2000 into a bank account, had their daughter design the first website, and reached out to family and friends for help.
The Usher 1F network has grown from one family to 70 individuals in 50 families, worldwide. The network of patients is critical, not only from a research standpoint, but also for much-needed emotional support. Many who are involved have said that this is the family they never wanted to have. While the daily challenges of Usher 1F are immense, having a patient-centered organization with the common goal of a cure gives families hope for a brighter future.
With the families working together, there was increased fundraising, which meant greater investments in research labs. Stay tuned for the next part of our series, Milestones in the Lab.
