I hinted about how many amazing topics I have to write about following the American Society of Hematology (ASH) annual meetings last week. I’m hopeful about research initiatives I heard; my spirits buoyed by seeing so many old friends and supporters–and I plan to write about it all.
But the primary reason for my trip? To support the Myeloma CrowdCare Foundation’s efforts to help kick-start important research that isn’t being funded.
I’ve written a few things about CrowdCare Foundation over the past few weeks, hinting about what we’re trying to do. Here’s the official press release that ran at ASH. I think it explains a lot:
Impatient Cancer Patients Help Drive First Ever Crowdfunding Initiative For Multiple Myeloma Research
SAN FRANCISCO, Dec. 3, 2014 /PRNewswire-USNewswire/ — The CrowdCare Foundation is announcing the first crowd funding initiative for myeloma research at the American Society of Hematology 2014 conference. The Myeloma Crowd Research Initiative (MCRI) is a new approach to funding cancer research; combining the skill and knowledge of leading myeloma specialists with the patient perspective and supportive patient social communities to select and fund promising research projects in myeloma.
Research proposals will be accepted on the www.myelomacrowd.org website beginning February 1, 2015. As an initial phase of the MCRI project, both a Scientific Advisory Board and Patient Advisory Board will work together with various research communities to source the most promising research projects in myeloma. The MCRI panel will filter the various projects and initially select two new projects to receive funding. Once chosen, the Myeloma Crowd will launch a crowdfunding campaign for each project in April 2015. All proceeds for each campaign will be donated to the two final projects. Donors will know exactly how their donation is being applied.
Leading this initiative are expert researchers and patient advocates. The founding members of the MCRI Scientific Advisory Board include: Dr. Ola Landgren, MD, PhD (MSKCC), Dr. Guido Tricot, MD, PhD (University of Iowa), Dr. Irene Ghobrial, MD, PhD (Dana Farber Cancer Institute), Dr. Rafael Fonseca, MD (Mayo Clinic Scottsdale) and Dr. Noopur Raje, MD, PhD (Massachusetts General Cancer Center). The MCRI Patient Advisory Board includes Pat Killingsworth (multiplemyelomablog.com), Gary Petersen (myelomasurvival.com), Jack Aiello (well-known myeloma patient advocate) and Jenny Ahlstrom (www.myelomacrowd.org, www.mpatient.org.)
“Patients with terminal cancers cannot sit by as idle spectators, waiting patiently for the next big discovery or cure,” says myeloma patient activist, Jenny Ahlstrom, and founder of the patient-driven CrowdCare Foundation and Myeloma Crowd Radio.
With a drop in NCI-funded research, alternative approaches are needed. “Although we have come a long way in improving outcomes for myeloma patients, we still need to do better, says Dr. Tricot. “Further progress will arise from excellent and diverse research initiatives supported via federal and private funds. It is therefore exciting to see a new funding mechanism like the Myeloma Crowd Research Initiative take shape at a time of reduced federal funding for research.”
“I am delighted to work with an organization whose commitment is to further advances in our management of myeloma patients,” says Dr. Fonseca. “Simply put, today’s best is not good enough.”
“Giving patients a seat at the table to drive new research is a new and exciting opportunity for the patient community. I’m excited to help myeloma patients and caregivers give input into what research is done–and how it’s funded,” says popular myeloma blogger and patient activist Pat Killingsworth. “Crowdfunding and the MCRI is a potential game-changer where new, exciting initiatives can be funded without the crippling limitations of the existing process,” says Gary Petersen.
Building a connected community to drive outcomes is a key component of the complete solution to find a cure. “The Myeloma Crowd Research Initiative is an innovative effort to help improve research and therapy for patients with myeloma in the new era of connectivity,” says Dr. Ghobrial.
The simple goal for the joint quest is a cure. “The Myeloma Crowd Research Initiative is an outstanding project devoted to fund research designed to ultimately establish a cure for myeloma. I am honored to be part of this effort,” says Dr. Landgren and Dr. Raje echoes the sentiment. “This is a novel and exciting approach to funding research in multiple myeloma and I am honored to be a part of it.”
About Myeloma Crowd/CrowdCare Foundation
The Myeloma Crowd is a division of the CrowdCare Foundation, a patient-driven 501(c)3 non-profit organization. The Myeloma Crowd provides patient education, advocacy and now research funding for multiple myeloma. Ahlstrom founded the CrowdCare Foundation, Myeloma Crowd and also hosts online radio interviews with top myeloma specialists worldwide to educate patients and promote clinical trial participation. www.myelomacrowd.org
SOURCE CrowdCare Foundation
Well, what do you think? A trial run to help fund an ALS patient’s, “clinical trial of one,” raised almost $50,000 in a week. Everyone I spoke with about our new crowd funding initiative felt we should be able to double that total in support of our first underfunded life saving research insight.
At our board meeting last Sunday night, bigger and more ambitious goals were hashed out. This could well turn into a really big deal. Jenny and her husband, Paul, have a lot of experience helping to raise large amounts of money for businesses worldwide. We’re fortunate they’ve decided to apply their exceptional skills to try and keep us all alive.
Listen, thinking long term when trying to cure cancer is a must. But I don’t have that kind of time, do you? Jenny’s goal–along with me and others involved with this exciting new idea–is to find a way to make a difference NOW! To help uncover a key component that helps myeloma drugs work better and longer, so we can extend our lives while we all bust our tails looking for a CURE!
I’m hoping our CrowdCare Foundation Patient and Scientific Advisory Boards can identify ways to buy more time right out of the gate, so in a year or two there’s another assist when we need it.
Sound like a plan?
Feel good and keep smiling! Pat