We Did it! Together, Patients and Experts Helped the Myeloma Crowd Research Initiative Exceed Our $500,000 Goal for High Risk Myeloma Research

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In 2015 the Myeloma Crowd had a hypothesis: If patients collaborated with myeloma experts, we could accelerate a cure. Our dream has become a reality with the success of the first Myeloma Crowd Research Initiative (MCRI) campaign. Our recent announcement was shared here.

The MCRI is the first patient-led crowdsourcing and crowdfunding initiative for multiple myeloma research and represents 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.

Leading this initiative are expert researchers and patient advocates. The founding members of the MCRI Scientific Advisory Board include: Robert Orlowski (MD Anderson Cancer Center); MD, PhD, Ola Landgren, MD, PhD (MSKCC); Guido Tricot, MD, PhD (University of Iowa);  Irene Ghobrial, MD, PhD (Dana Farber Cancer Institute); Rafael Fonseca, MD (Mayo Clinic Scottsdale); Noopur Raje, MD, PhD (Massachusetts General Cancer Center) and Mike Thompson, MD (Aurora Health Care). The MCRI Patient Advisory Board includes Cynthia Chmielewski (@myelomateacher), Eric Hansen, Gary Petersen, Jack Aiello,  Jim Omel (well-known myeloma patient advocates) and Jenny Ahlstrom www.myelomacrowd.org)

When we asked our expert myeloma Scientific Advisory Board members what they believed was needed in myeloma research, they unanimously said “More research for high-risk patients.” High-risk myeloma patients are still not getting the life-extending outcomes with today’s treatment options. While the average life expectancy for standard risk patients has increased to 8-12 years, high risk patients are still getting 2-5 year outcomes.

Little research globally was focused on high-risk myeloma. It seemed that the word “cure” was one specialists used tentatively if at all. Many believed that myeloma would continue to be treated as a chronic condition. This was not acceptable for us as patients. We wanted a cure.

First, the MCRI invited global myeloma researchers to submit funding applications. The initiative received 36 proposals from investigators at top institutions worldwide. The proposals were reviewed by the Scientific Advisory Board and narrowed to a top 10. Each of the 10 investigators were hosted on Myeloma Crowd Radio to share their work with the patient community and answer patient questions. Both the Scientific and Patient Advisory Boards then selected two projects to fund.

The final projects included CAR T cell research targeting CS1 and BCMA by Michael Hudecek, MD and Hermann Einsele, MD of the University of Würzburg, Germany and T cell research with autologous transplant by Ivan Borrello, MD at Johns Hopkins University. CAR T cell therapy appears to be one of the most promising and potentially curative treatments for multiple myeloma and there have been a handful of major pharmaceutical companies jump into the space with products in early clinical trials in 2017.

“We are delighted that our process identified the hottest research in laboratory research and clinical trials years before it became popular,” said Jenny Ahlstrom, Myeloma Crowd founder. “The expert-patient collaboration was a success in finding the best and brightest for high-risk patients.”

Dr. Ola Landgren of Memorial Kettering Cancer Center said,

“MCRI has rapidly established itself as a funding source for cutting edge myeloma research. Patients and experts working together. Impressive!”

Our goal was to raise funds for research with 100% of the donations going to the lab research. In addition to the online campaign, we utilized donations from our Muscles for Myeloma events and other fundraising events for the MCRI.

Myeloma patient Eric Hansen said:

“The MCRI introduced many of us to the model of crowd-funding specific projects to advance the science in the fight against myeloma.  Patients and their friends and families embraced this effort because every dime contributed was sent directly into the labs– not into staff salaries, advertising, or administrative costs.  Who else does that? It has been a great experience participating in what promises to be life-changing for many of us.”

What is most notable is that the transparent process to find and select some of the BEST research worked beautifully. Our experts helped identify and guide us to the right science and patients had a chance to participate in the decision, giving their key perspective and input. Two years before CAR T cell research was in the news, the Myeloma Crowd Research Initiative identified it as one of the most promising technologies in the myeloma research space.

“Determination, dedication and countless hours of planning and implementing fundraising has led to the MCRI’s dream of funding a potential treatment for high-risk multiple myeloma into a reality. Immunotherapy was in its infancy when MCRI first selected 2 award winning letters of intent, now it is the much desired area of clinical research,” said Cynthia Chimelewski, myeloma patient advocate.

The University of Würzburg project is now heading towards Phase I clinical trials in the European Union and the Johns Hopkins project is gathering data from its phase II clinical trials and will perform more genetic testing to see which patients do and don’t respond to the immunotherapy based on their genetics.

“MCRI has been very successful and extremely efficient in gathering the funds to support innovative high-risk, high reward research,” said Dr. Tricot.

“Jenny Ahlstrom and the team she has brought together at the Myeloma Crowd have been amazing in demonstrating how crowdsourcing and crowdfunding can be used to increase research in myeloma. I am proud to be involved with this group.” Mike Thompson, MD

“Empowering patients to be part of their cure has resulted in many unexpected benefits,” said Ahlstrom. “When we started, many were skeptical about the ability of a patient led effort to identify and fund top myeloma research. We have been amazed at the incredible power of tapping into the energy and motivation of the patient community to drive real outcomes.”

We will continue to fundraise for the MCRI and the donations will be used towards our next project selections. You can help support patient-driven research that has been validated by best-in-class myeloma experts by donating today.

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About Author

Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio and the CrowdCare Foundation.

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