In 2015, the Cure GM1 Foundation granted $422K towards GM-1 Gangliosidosis intravenous gene therapy research being conducted by at UMass Medical School and Auburn University. Additional funds raised in 2015 are being saved for future grants and fundraising.
Linked here are PDF files documenting the donations to UMass and Auburn. The amounts mentioned in the letters reflect the funding at the time and not the final amounts for 2015.
We are all too painfully aware that children’s lives are at stake. We were deliberately generous in the hopes of accelerating research towards human clinical trials as soon as possible.
When we first started out, our initial goal was only $50K. At the very beginning of our fundraising, we felt this goal was ambitious, but we were quickly humbled by an incredible outpouring of support. It was due to this amazing support that the Cure GM1 Foundation came into being.
In less than a year, more than 10 times our initial goal was generously contributed towards medical research by our donors. We are so very grateful to everyone who contributed, including supporters from around the world and many affected families.
Rest assured, the overhead costs for our foundation are negligible. There are no paid employees and the expenses are quite minor. The maximum amount possible is being allocated towards a cure and medical research. There is no one who wants a cure more than a parent of a child who suffers daily from this horrible disease.
There is still much work to do. In 2016, we will continue to fight for a cure! Stay Tuned!
The Fine Details
For the very detail-oriented, here are a few other notes about the fundraising. As we initiated fundraising, funds were donated directly to UMass Medical School and Auburn University. Therefore, the nonprofit Form 990 will not reflect this total for 2015 in tax records. The reasoning behind this approach is that we wanted to leverage corporate matching. Some corporations require a nonprofit to have been in existence for more than a year to apply a match. To leverage corporate matches in the first year, we had to direct funds to the universities.
Finally, the nonprofit was not formed at the outset. We urgently wanted to initiate fundraising. The reasoning behind the rush is that we know the clock is ticking and children are dying. The IRS approved 501(c)(3) status in April of 2015, whereas a large portion of the fundraising was conducted in the beginning of 2015 in January-March.
Thank you for reading and for your support!