Newsletter - Winter 2018
Dear Usher III Initiative Friends,
It has been a tremendous loss for me personally to lose the single most inspirational person in my life, my father and founder of the Usher III Initiative, Dick Elden. His two-year battle with melanoma was a fierce one, and he was a true fighter right up to the end. He fought with the same optimism and determination he instilled in me to deal with having Usher syndrome.
Dick Elden, Co-Founder, Usher III Initiative
My father taught me never to give up and to believe that any problem is fixable with dedication and commitment.
He created his business with the same innovative spirit that he brought to the Usher III Initiative. He maximized the potential success for a treatment by reaching out to the best and the brightest, and having them to work as a team instead of as individuals. My father's entrepreneurial spirit coupled with his “think outside of the box” vision is at the core of the Initiative’s ethic.
It remains my hope that my father’s legacy will include achieving the Initiative’s goal of developing the first treatment for patients with Usher III, and I am determined to continue building on what we started over 16 years ago. The fight and determination that my father instilled in me lives on as we continue to move forward with our work.
Please know how proud my father was of the accomplishments friends like you have made possible over the years, and how honored he was to have such an impressive group of people on board. We started this team from nothing, and together, went on to build a sophisticated medical research organization.
Exciting Progress
I am happy to report on some exciting progress. Pre-clinical toxicity studies on the small molecule developed with Usher III Initiative support are finally underway. This is a costly process, but it is critical to demonstrating that this drug treatment is safe, and necessary to gain the confidence of a potential pharmaceutical partner that could help bring this drug to clinical trial.
Additionally, our lead researcher at Case Western Reserve has produced interesting data that alludes to possible alternative indications for our drug, meaning, it could potentially be used to treat additional diseases other than Usher III.
Your Support Makes Progress Possible
We are closer to making a treatment for Usher III a reality, and it could not have happened without your support. As the holiday season approaches we hope that you will consider making an end of year donation to the Usher III Initiative to help continue what we started together so many years ago. You can make a tax-deductible donation online through this link.
As always, we also cannot emphasize enough the importance of each and every patient with Usher syndrome registering on the patient registry. Population size, patient accessibility, and patient data are essential to convince a pharmaceutical company to invest in development, and for securing FDA approval. If you have Usher III and have not gone on the patient registry yet, that link is here.
And if you or someone you know with Usher syndrome has not gotten genotyped yet and need help finding a way to get genotyped, please write to me personally and I will walk you through how to get this done. For more information on genotyping click here.
As we embark on this new era without my father at the helm, I thank you all for your continuing support. I wish you and your family a very happy healthy holiday season and look forward to a productive 2019!
Sincerely,
Cindy Elden
President and Co-founder, Usher III Initiative