Where does the funding go?
For over 20 years, DFI has helped provide funding for research being carried out by Dr. Robert H. Brown, previously at the Day Neuromuscular Research Laboratory at Massachusetts General Hospital (MGH), and currently at UMASS Medical Center in collaboration with Dr. Florian Eichler at MGH.
What has the funding accomplished?
- Due in part to research funded by the Deater Foundation for more than 20 years, the gene causing HSAN1 (SPTLC1) has been identified and a mechanism has been theorized.
- Funding has also helped finance work on HSAN1 mouse models to provide key insights which, coupled with similar findings made in humans, have been extremely useful in theorizing the mechanism of the disease.
- In both 2008 and 2010, 2013, and 2017, DFI provided MGH with funds to host an HSAN1 Symposium where top researchers from around the world met together to discuss HSAN1 and their research as it pertained to the disease. These scientists represented areas such as: neurobiology, neuromuscular diseases, biochemistry, and clinical chemistry. Throughout each of the symposiums, these scientists shared and discussed their research openly with each other in an effort to collectively make advancements in understanding HSAN1.
- In 2011, DFI provided Dr. Brown and Dr. Eichler with seed money to start the first ever human study for patients with HSAN1. This pilot study builds on successful experiments with mice raised with the HSAN1 disease gene that were given an amino acid treatment. This treatment brought about promising results in mice, therefore the human pilot study is the next step in discovering the efficacy of the treatment. The pilot study will involve a small group (5-6) of HSAN1 patients who will be given a high dosage of the treatment for one year. Results will be measured against individual baseline measurements to determine treatment efficacy.
How can I help/give?
- Amazon Smile (smile.amazon.com) offers the same online shopping experience as amazon.com. But, if you select Deater Foundation, Inc. as your charity of choice, Amazon will donate 0.5% of your eligible AmazonSmile purchases to DFI! Easy to do, and a great way to support Deater Foundation Inc!
- Consider holding your own fundraiser: run/walk, yard sale, silent auction, etc. Proceeds to benefit Deater Foundation, Inc.
- Give! Contributions are tax deductible and can be sent directly to:
Deater Foundation, Inc.
PO Box 255
White Deer, PA 17887
- Online Giving is available, too! PayPal donations is a way to accept credit card and bank account donations. Note: if utilizing PayPal, 2.9% + a $0.30 transaction fee is charged by PayPal for the use of their service.