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The Myeloma Crowd is a division of the CrowdCare 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:
3315 Mayflower Ave, Suite 1
Lehi, UT 84043
The CrowdCare Foundation is a patient-driven, 501(c)3 non-profit organization that empowers patients with rare diseases at each step of their disease journey – from diagnosis, through education, care and on to a cure.
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.
She 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 movie research forward at a faster pace.
Through her experience in systems engineering and marketing, and her husband Paul’s experience in entrepreneurship, she saw an opportunity to empower patients to take action toward accelerating cures for rare diseases.
The Myeloma Crowd offers three areas of support:
Simplified Patient Education
The Myeloma Crowd aggregates and shares the latest research in patient-friendly language on each disease website and provides social media groups where patients can exchange information. We also host live patient meetings and seminars, especially for relapsed and high-risk patients.
Support Research Driven by Patient Needs
The Myeloma Crowd connects patients with top researchers in the field to explore gaps in current research funding. We then select specific projects that will find the most urgently needed answers to pressing treatment questions. The two Myeloma Crowd Research Initiative projects were carefully selected by both an expert Scientific Advisory Board and Patient Advisory Board and targeted toward the most promising current progress toward a cure.
Use Data to Solve Patient and Research Problems
For rare diseases like multiple myeloma, the secret to a cure may be found in patient lab values and disease genetics. Our data solutions will offer immediate help for patients searching for treatment answers. Collecting and aggregating all available patient data into formats that researchers can use is also an extremely important and efficient way to accelerate research.