Dear Prion Alliance supporters,
We write to you mid-year with a quick update. Funding for our research is an urgent and growing need, and a donor will be matching your donations 1:1, up to $10,000, through the end of June. If you’re willing and able, please visit prionalliance.org/donate to make a contribution via PayPal, or send a check to:
Prion Alliance PO Box 391953 Cambridge, MA 02139
We last wrote to you in December 2017, having recently launched two new initiatives to enable our mission of preventing prion disease. We can now provide updates on both!
First, on the strength of your donations to Prion Alliance, we launched a clinical research study at Massachusetts General Hospital. The goal is to bring healthy, pre-symptomatic prion mutation carriers and controls to Boston to donate cerebrospinal fluid for research so that we can characterize biomarkers that we will one day use in a clinical trial of a preventive drug for prion disease. We’re pleased to announce that the ongoing study has been an enormous success so far: the first 15 participants have now been seen, and the enthusiasm and dedication of our research volunteers has surpassed everyone’s expectations. On the strength of the study’s success to date, principal investigator Dr. Steve Arnold is now pursuing funding to expand the study from its original quota of 20 to a total of 60 participants. The study is therefore still enrolling, and if you are interested in participating, please get in touch with study coordinator Chase Wennick email@example.com. Meanwhile, this spring we released the findings of our initial research on cerebrospinal fluid biomarkers in prion disease that led us to launch the study — you can read the manuscript on the biology pre-print server bioRxiv.
Second, in partnership with CJD Foundation, CJDISA, and Broad’s Data Donation Platform, we launched the Prion Registry, an online research participant registry for prion disease. The goal is to allow patients and people at risk to find opportunities to participate in research, and to catalyze scientific progress by allowing researchers to find participants and by demonstrating that our community is organized for clinical trials. To date, the registry has enrolled 116 participants, listed 5 actively recruiting research studies, and has provided summary statistics to 3 researchers looking to launch new studies. This is a great start, but we still have lots of room to grow. If you haven’t already, please visit the registry at PrionRegistry.org to sign up!
On a personal note, our daughter Daruka is now 10 months old, and is crawling, babbling constantly, and smearing solid foods in the general vicinity of her mouth with gusto. She is a miracle who brings joy to every moment and reminds us why we do what we do.
Thank you all so much for your support. Scientific research is exciting and energizing, but also exhausting. Every day we draw strength from knowing that people support us and are looking to us for hope for the future.
Eric & Sonia