The Cure Tay-Sachs Foundation (CTSF) is a non-profit organization dedicated to funding the research projects that provide HOPE for developing a treatment and/or cure for Tay-Sachs disease. The CTSF was incorporated on June 1, 2007 in the state of Ohio. It was started by the parents of children that are suffering or have suffered from Tay-Sachs disease. A disease with no treatment, no cure, and very little research funding.
The foundation was certified as a tax exempt organization by the Internal Revenue Service under section 501(c)(3) on August 9, 2007. That qualifies us to receive tax deductible bequests, devises, transfers, or gifts under sections 2055, 2106 or 2522 of the code. The foundation is made up of 15 board members – most directly related to a Tay-Sachs patient's. The corporate office is in Cleveland, Ohio but board members and supporters live through-out the United States.
We hope to raise money by soliciting donations on-line, by approaching other foundations or philanthropic donors, by selling t-shirts and other items emblazed with our logo, by doing craft sales, golf outing, silent auctions, etc. We must show the world just how far medical research has advanced in recent years and how close a cure for Tay-Sachs is with appropriate funding. Our initial goal was to raise $1,000,000 in three and a half years - we ended up raising $1.5 million and as of the end of 2015 we have raised $3.8 million. The CTSF has grown into the largest private funder of Tay-Sachs disease research in the US spending $1.8 million. We have exceed all or our expectation - but still have far to go to beat this horrible disease. The fact remains, every child ever affected by Tay-Sachs disease has died. We must stop that!!
Research projects already exist that have shown promise for curing disease like Tay-Sachs, but many of them fade away to do lack of funding. A Tay-Sachs Gene Therapy Consortium has shown great promise in animal models, but has slowed and become more expensive due to toxicity issues. We believe we have fixed those issues and are pushing towards clinical trials in early 2017. A GM2 inhibitor (NB-DGJ) has shown excellent result in laboratory setting to reduce the waste product created in brain cells. The problem is the drug is not produced for human subjects because there is not enough demand (that is code for no profit margins). The science is ready to breakthrough but funding is lagging behind. The are just beginning a new Inhibitor project at Boston College on a drug believed to be more effective than ND-DGJ and less expensive (Jan 2016). The new model for research is a dedicated, motivated partnership between the research groups and the activists. Tay-Sachs disease has the dedicated, motivated research team in place - we need to supply the activists with funds to move the research forward.
Once the cure is found, the foundation will focus on education and screening. We will spread the word about Tay-Sachs disease and its treatment. We will help to educate people in high risk populations about screening for the Tay-Sachs gene.
As an added bonus, our work may help to advance the research initiatives currently battling other lysosomal disease (like Tay-Sachs) and larger disease families with neurodegenerative affects like Parkinson's, Alzheimer's and MS. The impact of what we do here could impact millions of people down the road.
With your help Tay-Sachs disease is going down!!!