Where do your DONATIONS go?
Our Promise to Nicholas is grateful to our donors who have supported the Foundation over the years. Virtually all of the donated money has been used to support promising scientific projects and the interactions of scientists in the field of Batten Disease research. Past support has been provided to the Batten Disease Support and Research Association (BDSRA). Our ultimate goal is to find a cure for this horrific childhood disease.
“Our primary mission is to raise funds and create partnerships in order to promote awareness, provide education and develop translational research regarding Batten Disease.”
How it works?
With recent budgetary constraints imposed by the US Congress, funding of traditional resources for our nation’s research scientists, such as the National Institutes of Health (NIH), has dramatically decreased. This reduction in funding particularly affects research on rare (or orphan) diseases such as Batten Disease. From a public policy viewpoint, advances in rare diseases are not as newsworthy as advances in common diseases. Dr. Davidson believes that “family foundation support is being increasingly relied upon to fill a growing void in NIH funding. In short, there are discoveries that simply would not happen without support from foundations such as OPTN.”
Today, Dr. Davidson reflects that “funding from family foundations such as OPTN has provided much needed support for Batten Disease research from several perspectives. First, interacting with families and having them visit the laboratory is exceptionally motivating. Second, the monetary support allows cutting edge experiments to be undertaken in a timely manner, rather than months or years after the idea has surfaced. And third, the advisory role of fellow scientists who review grant proposals for foundations such as OPTN helps to make sure that we are asking the right questions.”
Family foundations
In discussions with Dr. Dainiak, Dr. Pearce remarked that “Research support from OPTN and other family foundations (for workshops) is tremendously important for initiation of novel research technologies into rare diseases such as Batten Disease. It is particularly important for bringing in new investigators to the field whose research approach is applicable to Batten Disease.” In effect, the 2014 workshop will “draw new ideas and concepts into the field which are not part of the natural expertise of existing Batten Disease researchers”.
Spread the word!
OPTN is making a difference in development of Batten Disease research. As this field matures, new therapeutic strategies will emerge and a cure will be close at hand. Your contribution will help us reach our goal of curing Batten Disease.
Spread the word! The more people who find out about a project, the more support it will get. So post a link to the project site on your Facebook page or include it in your email-signature. Or print out the project page and pin it to a noticeboard. You can always donate anonymously.