ABOUT THE MYELOMA CROWD
The MYELOMA CROWD is a division of The CrowdCare Foundation, 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.
The Myeloma Crowd offers three areas of support:
Simplified Patient Education
We aggregate and share the latest research in patient-friendly language on each disease website and provide 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
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. The two current 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.
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.
ABOUT OUR FOUNDER
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.
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