In 2014, Vision for a Cure (then under the name Grace’s Hand) made a donation to the University of Oregon to support the work of Dr. Monte Westerfield, a biological scientist who has devoted his career to studying the basis of human diseases and Usher syndrome, specifically. Dr. Westerfield received the AB degree from Princeton University, PhD from Duke University, and postdoctoral training at the Max-Planck-Institute in Munich, Germany and at Harvard Medical School. This donation allowed the University of Oregon to establish the Usher Syndrome Research Fund – a fund that directly supports the work of Dr. Westerfield and his laboratory.
Since then, the Usher Syndrome Research Fund has attracted over $250,000 in donations from various other organizations and individuals. The fund has allowed the Westerfield Lab to create new biological models to study the development of Usher syndrome, provided the opportunity for UO scientists to collaborate with other Usher syndrome researchers across the nation and has been leveraged by several million dollars in federal grant funding directed to the Westerfield Lab. The Usher Syndrome Research Fund has been a very important means of support for Dr. Westerfield’s ongoing research.
Vision for a Cure is proud to have been instrumental in creating this fund and will continue to make donations to support Dr. Westerfield’s work.
Professor Monte Westerfield's (pictured) adult daughter and son also have Usher syndrome, so he also has a very personal vested interest in pursuing research for a cure. The Professor has four postdoctoral associates, two technicians, and several students all studying Usher syndrome exclusively. They work very collaboratively with clinical groups in Germany and the Netherlands, who provide Usher syndrome patient data as well as research data.
The Westerfield Laboratory focuses on understanding the mechanisms that regulate the differentiation of neurons. They study how the specific properties of different kinds of neurons are regulated. They use zebrafish and a combination of anatomical, physiological, molecular, and genetic techniques. The goal of their research is to provde a better understanding of the mechanisms that regulate the establishment of specific neuronal cell fates during normal development and what goes wrong during disease.
Most recently, they have discovered the major reason why sensory neurons in the eye and ear die. The cells die very similarly to neurons lost in Alzheimer's and Parkinson's diseases, where there are studies underway to develop treatments that could delay or prevent cell death. They plan to test these treatments in their laboratory to see whether they may also be effective in Usher syndrome.
Professor Westerfield also collaborates with a Dutch laboratory to develop strategies for gene replacement strategies. There is a clinical trial underway for Usher 1b, which is caused by mutations in a small gene. But most other Usher genes are too large for this method. So they hope to develop a new strategy that can be used with the larger, more commonly affected Usher genes.
Professor Westerfield says our donations will be used, "to generate new Usher models, primarily for USH2A, the most common form of the disease in humans. This gene is very large, too big to package into currently available viral delivery systems. With our collaborators in the Netherlands, we hope to design shorter, so called mini-genes that could ultimately be used in clinical trials in humans. The problem is to figure out which parts of the gene are dispensable, and which are required. Your money would significantly augment this study."
You can read more about the Westerfield Laboratory here and about Professor Westerfield here.
You can help fund this research by clicking here to donate. Vision for a Cure is a 501(c)3 non-profit and your donation is tax-deductible. All proceeds benefit Usher syndrome research.
Or, if you would like to donate directly to Professor Westerfield's Laboratory please click here. Be sure to scroll down to "Employer Gift Matching" to find out if the company you work for will match your donation.
100% of all donations and 100% of all profits from fundraisers like Arlington Brew Fest, are donated to the Westerfield Laboratory within the Institute of Neuroscience at the University of Oregon. To date, we have raised approximately $150,000.00. With your compassion and support we will continue to raise funds for research to find a cure for this horrible disease that is robbing so many of both their hearing and their vision.
In addition, the University of Washington’s Ophthalmology Department is working on several research projects that one day might help people with Usher syndrome. Our previous fundraisers were supporting stem cell research in their Department of Ophthalmology.
The UW Medicine Eye Institute hopes to launch the first clinical trial for the use of stem cell therapy to treat Retinitis Pigmentosa, the blinding condition associated with Usher’s syndrome. They also believe that this research might one day offer a new treatment for other retinal diseases, like Age-Related Macular Degeneration.
If you would like to donate directly to University of Washington’s Ophthalmology Department Stem Cell Research Fund, it is possible to do so online by clicking here. In the comments box please mention Vision for a Cure /Usher syndrome.
Many companies will match your donation! So you can double your giving by clicking YES on the question, “Does this gift qualify for a company match?”
For those of you who don’t already have a special cause that you are contributing to through your company’s United Way Giving Campaign, please consider donating to Vision for a Cure, the University of Oregon's Usher syndrome research or the University of Washington’s Ophthalmology Stem Cell Research Fund.
Thank you for your compassion and support, and for sharing our Vision for a Cure!