Organizations Filed Purposes:
A PATIENT-CENTERED APPROACH TO HEALTHCARE INNOVATION FOR RARE CANCERS AND ORPHAN DISEASES.
PATIENT ADVOCACY (PSA): WITH A PATIENT'S PERSPECTIVE, THE CROWDCARE FOUNDATION SOLVES COMMON PROBLEMS FOR PATIENTS WITH ORPHAN DISEASE USING PRACTICAL AND SIMPLE SOLUTIONS. THE MYELOMA CROWD (WWW.MYELOMACROWD.ORG) AND ALS CROWD (ALSCROWD.ORG) WEBSITES OFFER AGGREGATED INFORMATION AND THE LATEST NEWS AND INFORMATION FOR EACH DISEASE COMMUNITY. ADDITIONALLY WE PROVIDE ONLINE SUPPORT GROUPS FOR EACH COMMUNITY FOR PATIENTS TO SHARE CRITICAL INFORMATION ABOUT THEIR DISEASE.
SUPPORT FOR CLINICAL TRIALS (SCT): THE CROWDCARE FOUNDATION RECOGNIZES THAT LITTLE-KNOWN DISEASES PROVIDE A SIGNIFICANT CHALLENGE: THERE AREN'T THAT MANY PATIENTS TO PARTICIPATE IN CLINICAL RESEARCH. THE CROWDCARE FOUNDATION AIMS TO PROMOTE CLINICAL TRIAL PARTICIPATION TO HELP ACCELERATE THE PACE OF MEDICAL RESEARCH. THE MYELOMA CROWD RADIO AND ALS CROWD RADIO SHOWS INTERVIEW TOP RESEARCHERS AND ENCOURAGE PATIENTS TO JOIN CLINICAL TRIALS IN THEIR RESPECTIVE DISEASE STATES. THESE SHOWS GIVE PATIENTS INSIGHT INTO THE LATEST RESEARCH BEING PERFORMED. ADDITIONALLY, THE MYELOMA CROWD RESEARCH INITIATIVE IS A CROWDSOURCED AND CROWDFUNDING RESEARCH PROJECT TO FIND AND FUND THE BEST RESEARCH FOR HIGH-RISK MYELOMA PATIENTS. THE MCRI IS NOW FUNDING TWO IMMUNOTHERAPY PROJECTS: DR. HERMANN EINSELE AND DR. MICHAEL HUDECEK AT THE UNIVERSITY OF WURZBURG AND DR. IVAN BORRELLO AT JOHNS HOPKINS. ALS CROWD IS DEVELOPING A DATA AGGREGATE SYSTEM FOR ALS PATIENTS TO IDENTIFY KEY DRIVERS AND BIOMARKERS TO BETTER DEFINE THE DISEASE.
DATA SOLUTIONS (DS): THE MYELOMA CROWD LAUNCHED THE HEALTHTREE DATA SOLUTIONS INITIATIVE AS A DECISION TREE SUPPORT TOOL FOR PATIENTS. THIS INITIATIVE WILL SERVE AS BOTH A PATIENT EDUCATION AND RESEARCH TOOL. TODAY THERE ARE A WIDE VARIETY OF AVAILABLE TREATMENT OPTIONS FOR MYELOMA PATIENTS. KNOWING HOW TO BEST STAGE AND TIME THESE OPTIONS IS BOTH AN ART AND SCIENCE. WITH INPUT FROM TOP MYELOMA EXPERTS, THE POSSIBLE TREATMENT COMBINATIONS WILL BE IDENTIFIED AND PRESENTED TO PATIENTS. AS THEY USE THE TOOL, IMPORTANT PATIENT DATA WILL BE GATHERED, HELPING RESEARCHERS IDENTIFY NEW OPPORTUNITIES FOR CLINICAL TRIALS AND BEST PRACTICES.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Allyse Shumway | SECRETARY TR | 30 | $44,000 |
| Jennifer Ahlstrom | PRESIDENT | 60 | $0 |
| Adam Blum | BOARD MEMBER | 2 | $0 |
| Anne Drennan | BOARD MEMBER | 2 | $0 |
| Owen Legare | BOARD MEMBER | 2 | $0 |
| Seth Christensen | BOARD MEMBER | 8 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/201923199349315947_public.xml