A letter to friends of USF,
When our daughter Megan was diagnosed in 2007 with Usher Syndrome, our lives became a struggle to understand the enormity of what she was facing. Our endeavors to find a way to support Megan culminated in the formation of this organization, The Usher Syndrome Foundation. As Megan bravely goes forward into her future and an ever darkening world, we embrace this foundation as a symbol of hope for her future, and the future of everyone afflicted with Usher Syndrome.
Our organizations most important goal is to generate financial resources to support Usher Syndrome research. Our dedicated directors and members have come together in an effort to help support research programs focused on the development of treatments that will slow the affects of this disease, stop the deterioration of retina cells and reverse the effects of Usher Syndrome, the leading cause of combined deaf-blindness. With such devoted supporters we can help the medical community find a cure.
“Vision for the future”
With our kick-off fundraiser we celebrated Megan’s courage, elusive as it can often seem to her. She unwittingly describes for us through her perseverance what it means to have dignity and poise, graciousness and true faith. We celebrate her ability to do so because of all of you. Megan is a shining example of what a loving and compassion heart, an honest disposition, and quiet determination can bring out in others.
Your presence at our Valentine’s event, and the strength of our committee of family and friends who put the evening together, is a testimony to the ability of the goodness in all of us to bring out the best in others, offering an unconditional hand of support when one of us suffers such a devastating blow. Lofty as our hopes may seem now, your ongoing support of our fundraising efforts, will enable us to support the scientific community and researchers toward medical advancements into new treatments for Usher Syndrome. Our hope, and my lifelong commitment to this effort is so that one day science will offer Megan and all who are deaf-blind the possibility of regaining their sight and hearing.
Megan wishes to express her love and heartfelt gratitude to each of you for being a part of her USF family and for having such an impact on her spirit as she braves her future. To all of those who have supported her in the last few years with their love, with their unconditional support, prayers and good thoughts, and to those that blesses her with an unselfish devotion to our cause she thanks you from the entirety of her heart.
On behalf of Megan’s enormous loving family, I wish to thank each of you for being here tonight. Your presence brings us hope. We especially thank the family and friends who held us up when our knees threatened to buckle, whose acts of kindness and compassion gave us needed strength in our darkest hours. To those of you who were generous enough to take things off our plate, who recognized our families need to not take on any unnecessary burdens or difficulties, any additional stress or heartache with such thoughtful consideration so that we could help bear this burden with Megan, God bless you.
Watch our website for updates and for future events. And ‘save the date’ for our 2 nd annual celebration of love, February 13 th, 2010 Valentine’s Dance and Auction.
With Love,
Terry Bettlach-Cacciatore
Executive Director, USF
Megan O’Neill, born with a moderate hearing impairment, was studying to be an architect at the University of Kansas when it was discovered that an increased difficulty with her vision was actually due to Usher syndrome. A condition we had never heard of until that day. At 23 years of age, Megan is already considered legally blind.Find out more about Megan
About 20,000 people in the United States have Usher syndrome. It is the leading cause of combined deafness and blindness world wide. At this time there is no cure for Usher syndrome and treatments are experimental. As it is the rarest form of RP (retinitis pigmentosa), it is afforded the least amount of funding from organizations that raise money for research of RP and other forms of blindness.Find out more about Usher Syndrome