We recently topped our goal of enrolling 1,000 people with a group of rare blood disorders known as myeloproliferative neoplasms, or MPNs. As a testament to the passion of the people who’ve enrolled in our MPN Research Initiative and the power of our research model, this was all done in just a year. That momentum has already helped lead to some promising findings giving us more insight into the disease and offering hope for so much more. We’re excited by the possibilities for research, but more importantly we’re heartened by what it could offer for those who are battling this disease. For some of us, this is a very personal fight. Ashley Gould, 23andMe’s Vice President of Corporate Development and Our Chief Legal Officer, shares her and her father’s story of battling an MPN.
by Ashley Gould,
Vice President Corporate Development & Chief Legal Officer, 23andMe
It all started with a phone call. My father had collapsed in his office and was in the hospital. At first the doctors thought he had experienced a mini-stroke. What followed was a blur of tests and months of waiting. Finally, came the diagnosis. My father had myelofibrosis, one of the rare blood disorders known as myeloproliferative neoplasms, or MPNs. It may sound strange, but in some ways it was a relief to know at last what he was facing.
My father’s diagnosis and the prognosis that he had just three-to-five years to live put an entirely new haze around my senses. As a newly minted lawyer working long hours to earn my stripes, I was in a continual state of exhaustion. With the news weighing on me, I seemed to move in slow motion, particularly when surrounded by people going about their lives. In high school one of my favorite poems was WH Auden’s “Musee des Beaux Arts.” After dad’s diagnosis, every time I would see people sitting over coffee, talking and laughing or simply enjoying their life, a few lines of that poem would come back to me:
“About suffering they were never wrong,
The old Masters: how well they understood
Its human position: how it takes place
While someone else is eating or opening a window or just walking dully along;”
How could people be laughing when my father had just been given a death sentence? It was, for a period of time, unthinkable to me and incredibly incongruous.
Once I collected myself, the first thing I did was sign up for Team in Training to raise money for the Leukemia and Lymphoma Society. I was already a runner and I enlisted an amazing woman and friend to run the Anchorage marathon with me. I raised as much money as I could. We ran the race, and then it was over and I was at a loss again about what else I could do to help him.
When I could I went with my dad to his doctors’ appointments. We talked often, but I felt like I wasn’t doing enough for my father — a terrible feeling when someone you love is fighting for his life. I left my job and went to work at a biopharmaceutical company. I thought if I couldn’t do something directly to cure my father, at least I would try to lend my skills in the pursuit of making a difference for others. After that company was sold, I was introduced to the co-founders of 23andMe. That first meeting convinced me that the company embodied not only a vision I believed in, but one that offered a way to study rare diseases, like my father’s. I was quickly committed.
And now, just over a year after launching 23andMe’s MPN Research Initiative, I am pleased to announce that we have hit our goal of enrolling 1,000 patients. This isn’t just a number. Creating a research community of this size for such a rare disease offers great opportunities to make new discoveries. In the short time since we launched the MPN Research Initiative, we’ve already made some promising findings. Our primary aim has always been to learn if there are genetic predispositions for the development of these kinds of illnesses and through this work we’re learning more and more about MPNs.
As one Scientific Advisory Board member, Dr. Ruben Mesa, a professor of medicine and Chair of the division of Hematology & Oncology and deputy director of the Mayo Clinic Cancer Center in Arizona, said:
“This is an important milestone for MPN research. We are hopeful that the opportunities to analyze genetic and molecular data, MPN disease characteristics, and symptomatic burden, all in concert will yield great benefits for the MPN patient community.”
For Scientific Advisor Board member, Dr. Jason Gotlib, an associate professor at Stanford University School of Medicine and Stanford Cancer Center, it boils down to time.
“Reaching this goal this quickly will help accelerate the search for answers,” Dr. Gotlib said.
Our MPN Research Initiative has hit its enrollment objective faster than any other 23andMe community, which is an amazing feat for such a rare group of diseases. Those who have joined the MPN Research Initiative are outspoken and vibrant, adjectives that also describe 23andMe. Thanks to the participation of people who are part of our MPN Research Initiative we have launched a preliminary report on MPNs as well as research findings related to our replication of an MPN association.
We are learning new things about MPNs and are excited to share more of what we have learned in the coming months. We are grateful to the MPN Community and our advisors for their support and expertise — we would not have made the amazing progress we have without them. I am additionally grateful to the team of people at 23andMe who have dedicated themselves to this project. We still have a lot more to do and learn about MPNs, but I’ll gladly take this encouraging beginning over doing nothing.