By Maxine Bookbinder

February 1, 2018 | A multiple myeloma diagnosis did not kill Jenny Ahlstrom’s spirit. It weakened her body, but strengthened her resolve to do what experts had not yet done: improve therapies for high-risk patients and possibly find a cure. Her determination resulted in the first patient-led crowdfunding and crowdsourcing initiative for multiple myeloma research.

Ahlstrom started the Myeloma Crowd Research Initiative (MCRI) to fund research initiatives for high-risk multiple myeloma and to expedite successful treatments to market. In remission with this rare and terminal illness, the mother of six considers her funding enterprise an investment in her future. 

Her efforts raised $512,000 in two years and funded two promising therapies: CAR T cell research targeting CS1 and BCMA by Michael Hudecek and Hermann Einsele of the University of Wurzburg, Germany, and T cell research with autologous transplant by Ivan Borrello of Johns Hopkins University.

“I think Jenny’s efforts are outstanding,” says C. Ola Landgren, Chief, Myeloma Service, Memorial Sloan Kettering Cancer Center and MCRI Scientific Advisory Board member. “She has been able to integrate efforts by patients and experts and provide a very rapid turnaround for large support through crowdfunding. She has done stellar work, and should have all the credit. Doctors realize that when patients are involved in funding research, it puts more stress on the urgency. We’re all working against the clock.”

 “To be part of the solution is very empowering,” says Ahlstrom. “It’s like therapy. You’re always watching and waiting. It’s a challenge emotionally to deal with because every time you get a blood test, you’re thinking, ‘is it coming back?’ I was not going to sit by until I run out of options.” 

The former IBM systems engineer and her husband, Paul, began their own research. At that same time, she had just completed treatment.  However, with a high-risk genetic translocation which puts her at greater risk for relapse and a more aggressive form of myeloma, Ahlstrom wanted to join a clinical trial. She found 450 online. “I have about a 95% chance of my disease returning. Which trial should I join? What I choose matters for my outcome so I must be careful about what I pick.” Overwhelmed about selecting an appropriate trial, Ahlstrom started an online radio show (www.myelomacrowd.org) as a means of talking to many myeloma specialists about their open studies. She eventually reached one million listeners within the myeloma patient community and hosted 105 interviews.

Despite the radio success, Ahlstrom wanted to impact and advance research directly. “I felt like I had to weigh in and do something. We didn’t want to replicate what others were doing; we wanted to fill gaps.” She and her husband opted for crowdsourcing and crowdfunding to find and fund “the best science in the field.”

She needed an advisory board comprised of experts and patient advocates; Ahlstrom invited seven myeloma specialists from her radio interviews whom she considered the most innovative, transparent, and progressive and six myeloma patient activists.  

At the 2015 American Society of Hematology (ASH) conference, the Ahlstroms presented the crowdfunding initiative to the advisory board, whose seven experts agreed that priority should focus on research for high-risk myeloma. While standard risk patients can live 10-12 years on average, high-risk patients have 2-5 years. “It made sense to me that if we could cure high-risk myeloma, we could cure all myeloma. So, why not hit it from the get go? Then everyone benefits,” says Ahlstrom. In 2016, they presented the initiative at the conference.

The Board then announced a $250,000 per project funding initiative and subsequently received 36 project proposals from prestigious worldwide facilities, including the Mayo Clinic, MD Anderson, and Johns Hopkins. “It was stunning to see the need for funding from such talented researchers at top institutions,” says Ahlstrom. “NIH funding is clearly limited.” The advisory board vetted the projects, selected 10 finalists and then then two top winners.

They were chosen, says Landgren, with the focus on patient influence, and “based on their innovation, feasibility, and impact where these could translate into relevance in a shorter time span and development going forward. In many ways, it is similar to what clinical scientists look for when reviewing more traditional grants, but this is more focused on the translational, direct component that can impact patients and with a particular emphasis on rapid implementation in the clinic. This is a high-speed mechanism designed to support patient-centered translational research. It is what we have been missing for a long time.”

The last step for the initiative was to publicize MCRI throughout the myeloma community and to invite patients, family and friends to donate. “Because the two projects were vetted by experts, and because patients knew it was real, it was compelling research that would move the bar for myeloma patients. Patients knew where the money was going. I don’t take a salary and we have a small team,” said Ahlstrom. “We kept it lean and 100% of donations went to the research projects.”

She compares her online crowdfunding campaign (give.crowdcare.org/mcri) to GoFundMe, but with different software, targeting potential donors with a vested interest in multiple myeloma, such as patients, family, and caregivers, rather than to the general population.

Ahlstrom calls the first project—German research on Car T cells—“a game-changing immunotherapy.”  When CAR T cell therapies have been used in clinical trials on heavily pre-treated patients, patients had 90-100% response rates, with 75-80% remission rates. It is too early to know if the remissions will be durable, but prospects are promising; up to at least five companies are working to get commercial Car T cell approval. The second project, marrow infiltrating lymphocyte (MILs) immunotherapy from Johns Hopkins, is currently in clinical trials. 

“If patients work to support experts, it is stunning what we can do together,” says Ahlstrom, noting that scientists are often too busy with research, patients, and presentations to share project updates with the patient community. “It’s great for me to be able to help share what’s being done in language patients understand. Getting the patient community united around the acceleration of a cure for themselves is amazing.”

Although there are only about 32,000 cases diagnosed in the US annually, Ahlstrom says myeloma has more advances than other cancers due to what she describes as an extensive, collaborative research community and active patient advocates. 

Over 80% of myeloma patients are seen by general oncologists; according to the Mayo Clinic, patients treated by myeloma specialists live longer. Therefore, Ahlstrom’s next step is a collaboration with the advisory board on a new product, HealthTree, a software platform designed to help myeloma patients understand personalized treatment options based on expert research they can discuss with their oncologists. It will launch in beta in March 2018 and to the public in June 2018.

This latest project is designed to educate patients and physicians. For Ahlstrom, it is mental health therapy.  “It’s tough being a patient. When you’re diagnosed with cancer, you lose a sense of personal agency. Your choices are taken away from you. You’re told when to show up at a clinic, when to eat, what not to eat, who should drive you to the clinic, when to show up for a bone marrow biopsy and so on. I may not be able to control my multiple myeloma but I can control how I respond to it through my advocacy work.”

Ahlstrom continues to interview experts bimonthly and post the audio and transcripts, along with current articles on myeloma, daily living tips (“life with myeloma”), and clinical trial updates, on her weekly blog. Past interviews are available at www.myelomacrowd.org/myeloma-crowd-radio.

“You never know what the impact is. This is a lot of work but very rewarding. I won’t let this disease make me a victim. I can be proactive and feel that it is a real blessing that I can do this.”