Dear Prion Alliance supporters,

We have just successfully defended our dissertations, and at the end of this month we will officially receive our PhDs in Biological and Biomedical Sciences from Harvard! We now face the enormous task of setting up an independent research lab here at the Broad Institute so that we can continue full steam ahead on our quest to develop a drug for prion disease.

In support of this pivotal moment in our careers, a group of donors have generously stepped up to offer matching for our most ambitious fundraising campaign ever. Your donations will be matched 1:1 up to a total of $100,000 (yes, that’s 10^5 dollars) through the end of May. To make a tax-deductible contribution, please donate online via PayPal, or mail a check to Prion Alliance, PO Box 391953, Cambridge, MA 02139.

Our thesis defenses, April 16, 2019.

It’s now been just over seven years since we embarked on this quest, with the knowledge that Sonia is very likely to develop and die of prion disease unless we find a way to prevent it. It’s been five years since we began our PhDs. In many ways, graduating is just one more milepost on what will be a lifelong journey. But it has also been a powerful opportunity to reflect on how far we’ve come. From starting out with nothing but a hope and a dream, we now have a plan. We believe that if we can lower prion protein — the protein that causes this disease — in the brain, we can delay the onset of disease. We think that by measuring the level of that protein in spinal fluid, we can show that a drug did its job, so that it can be approved and patients can benefit from it. We have catalyzed a major industry partner — Ionis Pharmaceuticals — to develop such a drug, and we have launched a registry and a clinical research study to lay the groundwork for trials.

But developing a drug is very, very hard, and this journey is far from over. Ahead of us lies a tremendous amount of work yet to do: further developing our biomarker to the point that it is ready for clinical trials, building a trial-ready cohort of presymptomatic mutation carriers, testing drugs in animal models, continuing to work with regulators to establish a pathway for preventive trials, and laying out the proofs of concept for future drugs that will build on what we’ve learned so far in order to lower prion protein by multiple mechanisms and push the age of onset indefinitely into the future.

We are lucky to have the support of a premier biomedical research institution, the Broad Institute, which created dedicated space for us to do our work, provided the funds to launch our research program, and has surrounded us with the best and brightest to advise us on our journey. But with grants and fellowships ending as we graduate from our PhD program, we are in a real financial crunch for the next several months. If we can reach the goal of raising $200,000 this month — $100,000 in individual donations plus the $100,000 match — we will be on track to sustain our research program without breaking stride, and will be positioned to expand our ambitions as new funding sources come in. Please donate to help us meet this goal.

Thank you in advance for your support, and for believing that we can do this together.

with love,

Sonia & Eric

Update 2019-05-31: With only 24 hours to spare, we’ve made the $100K matching goal! It took 208 donors to get us here — thank you all SO much for believing in us and being our allies on this journey. Together we will conquer this disease!