Dear friends and supporters,
First things first, your donations to support our research will be matched 1:1 up to a total of $10,000 through the end of the year! Visit prionalliance.org/donate or mail us a check at Prion Alliance, PO Box 391953, Cambridge, MA 02139. We are so grateful for your support!
We last wrote to you in May of this year, when we had just defended our PhDs and were approaching a huge and uncertain transition. You responded in a tremendous way. In that one month, including the matching funds, we raised just over $200,000. Thanks to your support we’ve now completed the leap from PhD students to running an independent lab. We have even been able to begin to grow our scientific team, posting two new positions this fall, one of which has now been filled.
And we’ve been busy, constantly working to advance a drug for prion disease towards the clinic and to pave a path for preventive therapy in people at risk. We are continuing to work closely with our industry partners at Ionis Pharmaceuticals, and their development of an antisense oligonucleotide drug candidate for prion disease continues on schedule. Over the past several months we have published some of our work on natural history, biomarkers, and mouse studies showing effective therapy against prion disease. We’ve taken our prevention message on the road: Sonia spoke to neurologists, prion scientists, and genetic counselors at the American Academy of Neurology, Prion2019, and the National Society of Genetic Counselors meetings. We were presented by CJD Foundation with the Florence J. Kranitz Leadership Award and by Network of Excellent in Health Innovation with the Innovators in Health Award — an honor shared by the likes of Atul Gawande and several members of congress and former FDA commissioners.
We have continued to be thrilled and impressed at the patient community’s response to our work and enthusiasm for participating in research. Our clinical research study at Mass General Hospital continues to expand, with over 50 volunteers enrolled. This summer, our clinical collaborator, Dr. Steven Arnold, presented a preliminary analysis based on 43 participants, including biomarker findings that will be key to our clinical trial strategy. At last count, 267 people have now stood up to be counted and volunteer for research at PrionRegistry.org.
Whether it’s fundraising, donating, participating in research, or telling your family and friends about our work, we are grateful for everything you do to help us on our quest to end prion disease. Here’s to loads more progress in 2020.
all our best,
Sonia & Eric
Update 2019-12-11: As of last night we’ve made the $10,000 goal — and another donor has stepped up to offer to match 1:1 all donations that bring us up to the $15,000 mark. Please keep your support coming! A huge thank you to all 42 donors who have contributed so far!!