The Myeloma Crowd offers four areas of support:
We share patient-friendly myeloma information on www.myelomacrowd.org, including myeloma news, life with myeloma stories, myeloma clinical trials and other topic-based categories. Our Myeloma Crowd Community and Myeloma Crowd Round Table programs host live patient meetings and seminars, especially for relapsed and high-risk patients.
We connect patients with top researchers in the field to explore gaps in current research funding. We then select specific projects that solve the most urgently needed answers to pressing treatment questions. Myeloma Crowd Research Initiative projects were carefully selected by both an expert Scientific Advisory Board and Patient Advisory Board and were targeted toward the most promising progress toward a cure.
For rare diseases like multiple myeloma, the secret to a cure may be found in large data sets of wholistic patient data. Our HealthTree Cure Hub data portal offers immediate help for patients searching for disease navigation tools. This anonymized and aggregated data is shared with myeloma researchers as an extremely important and efficient way to accelerate research.
Myeloma patients, like all cancer patients, need emotional support. We provide a number of ways to help patients connect to get advice and support. The Myeloma Coach program facilitates one-on-one connections between patients and caregivers to help them benefit from each other’s experiences. The Myeloma Crowd Community program is a responsive, expanding online support group chapter program that links people with common interests including African Americans, caregivers, specific therapies, geography, nutrition, fitness and more.
When Jenny Ahlstrom was diagnosed with multiple myeloma in 2010, she anxiously searched for treatments and research for a cure. She noticed gaps in solutions for patients – most importantly the need for simplified information that would help patients obtain better outcomes.
Jenny noticed that childhood cancer clinical trials had 85% participation rates while adult cancers had dismal 3-5% participation rates. Many research projects were not completed because scientists could not find willing patients with these types of rare diseases. She set out to help educate patients and encourage them to participate in trials in order to move research forward at a faster pace.
Through her experience in systems engineering and marketing, as well as her husband Paul’s experience in entrepreneurship, Jenny saw an opportunity to empower patients to take action toward accelerating cures for rare diseases.
The Myeloma Crowd is a division of the HealthTree Foundation and is a registered 501(c)3 non-profit, tax ID 45-5354811. For donations, please donate online to the MCRI project here or mail checks to:
Myeloma Crowd / HealthTree Foundation
PO Box 1286
Draper, UT 84020
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