Thursday, January 29, 2015

It's official! I am on the advisory board for the Myeloma Crowd Research Initiative!

I am so excited to be invited to serve on the board of the Myeloma Crowd Research Initiative (MCRI). This is truly a groundbreaking way patients and doctors alike can find a cure for myeloma. I know a cure is possible and it is imminent. And until then, better treatments aimed at making this disease a chronic illness is happening every day. Here is the press release that just hit the PR Newswire, along with the web site that explains more. Stay tuned for details. This is a biggie!

Myeloma Crowd Research Initiative (MCRI) Adds Four Board Members To Select And Fund Promising Research Aimed At Finding A Cure For Multiple Myeloma

SALT LAKE CITY, Jan. 29, 2015 /PRNewswire-USNewswire/ — According the the NIH, oncology research funding from the National Cancer Institute (NCI) has remained flat for over a decade. To bridge the gap, the Myeloma Crowd Research Initiative (MCRI) has formed to select and fund promising research aimed at finding a cure for multiple myeloma, the second most common blood cancer. MCRI will use crowd funding via the Internet and social media to raise funds for this effort. The MCRI board features myeloma specialists, researchers, doctors, and knowledgeable patient advocates who, together, will review submissions that pose the potential for a cure and select individual projects to fund. Today, MCRI announced that it has added four new board members:
  • Dr. Robert Z. Orlowski, MD, PhD, Myeloma Director of the University of Texas MD Anderson Cancer Center, Director of Myeloma, SWOG Chair
  • Dr. Mike Thompson, MD, PhD, ASCO Social Media Work Group, co-founder #mmsm Twitter group
  • Lizzy Smith, myeloma survivor, patient advocate, blogger and writer
  • Cynthia Chmielewski, myeloma survivor, experienced patient advocate, co-founder #mmsm Twitter group
These new members join those currently on the MCRI board: Dr. Noopur Raje, MD, PhD, (Massachusetts General Cancer Center), Dr. Rafael Fonseca, MD (Mayo Clinic Scottsdale), Dr. Ola Landgren, MD, PhD (MSKCC), Dr. Guido Tricot, MD, PhD ( University of Iowa), and Dr. Irene Ghobrial, MD, PhD (Dana Farber Cancer Institute), and patient advocates Pat Killingsworth, Gary Petersen, Jack Aiello and Jenny Ahlstrom.

“Many promising research proposals never make it to the labs due to lack of funding,” said Chmielewski. “Patients and researchers bring different perspectives to treating disease and can now work in collaboration to select promising, innovative ideas."

For more information on MCRI, click here.

Contact:Jenny Ahlstrom
Myeloma Crowd

Myeloma Crowd Research Initiative Targeting High-Risk Myeloma
The Myeloma Crowd Research Initiative (MCRI) is a new approach to funding cancer research; combining the skill and knowledge of leading myeloma specialists with the patient perspective and supportive patient social communities to select and fund promising research projects in myeloma. The goal of the MCRI is to find and fund a cure for multiple myeloma.
Current treatments can extend life for many myeloma patients, however, outcomes for patients with very aggressive genetic features or aggressive relapsed/refractory myeloma are dire. By addressing the most aggressive forms of myeloma, we aim to provide completely new options for the entire patient community. The MCRI will review and select specific projects to fund via a new mechanism called crowdfunding. We will create specific campaigns for selected projects, giving transparency to the patient community about where the funds raised will be applied while engaging their review and support. The Myeloma Crowd Research Initiative is intent on funding translational research in the following areas:
  • Potentially curative solutions for high-risk myeloma genetic features including del 17p13, 4;14, 14;16, and 14;20 
  • Potentially curative solutions for aggressive features in relapsed/refractory myeloma patients
Collaboration Is Encouraged Individual investigator submissions are welcome, but due to the nature and incidence of high-risk features, we encourage collaborative proposals that include multiple investigators and institutions.
  • Letters of Intent will be accepted between February 1, 2015 and February 28, 2015. Download the application form from the Myeloma Crowd page www.myelomacrowd/MCRI. The form can be completed in Word and saved as a Word file or PDF file. Email the completed form to by 6 pm February 28, 2015.
  • Individual initial awards are limited to a maximum of $250,000, which includes direct costs and a maximum overhead of 10% of direct costs. Project ideas submitted that are collaborative between investigators/facilities are awarded based on the project specifications and could exceed the stated maximum.
  • Projects that reach targeted milestones and approved by the Scientific Advisory and Patient Advisory Boards will be renewed for up to $300,000 per year for two additional years defined by additional milestones and a fully justified research plan.
  • Letters of Intent are due 6 p.m. ET, February 28, 2015. Researchers will be contacted by March 15 and selected investigators will be required to complete a full proposal by April 15, which will include a short 2-3 minute video describing the project. The video does not need to be of professional quality but is for descriptive purposes only. The MCRI reserves the right to alter the dates as necessary.
  • Please contact for additional questions regarding the process.

Myeloma Crowd Research Initiative Scientific Advisory Board

 Dr. C. Ola Landren, MD, PhD
Memorial Sloan Kettering Cancer Center
Chief, Myeloma Service
 Dr. Irene Ghobrial, MD, PhD
Dana Farber Cancer Institute
Director, Michele & Stephen Kirsch Laboratory
 Dr. Guido Tricot, MD, PhD
Holden Comprehensive Cancer Center, U of Iowa
Director, Bone Marrow Transplant and Myeloma Program
  Dr. Noopur Raje, MD, PhD
Massachusetts General Hospital
Director, Multiple Myeloma Program, Raje Laboratory
 Dr. Rafael Fonseca, MD
Mayo Clinic Scottsdale
Director, Fonseca Laboratory and Getz Family Professor of Cancer
 Dr. Robert Z. Orlowski, MD, PhD
University of Texas MD Anderson Cancer Center
Director of Myeloma

Myeloma Crowd Research Initiative Patient Advisory Board

 Jenny Ahlstrom
Myeloma Survivor
Founder, CrowdCare Foundation, Myeloma Crowd, Myeloma Crowd Radio
 Pat Killingsworth
Myeloma Survivor
Daily myeloma blogger and patient advocate:
 Gary Petersen
Myeloma Survivor
Patient advocate and myeloma survival statics:
Jack Aiello
Myeloma Survivor
Experienced patient advocate
Cynthia Chmielewski
Myeloma Survivor
Experienced patient advocate @MyelomaTeacher

Myeloma Crowd Research Initiative Communications Advisory Board

 Dr. Mike Thompson, MD, PhD
University of Wisconsin School of Medicine
Medical Director, Early Phase Cancer Research Program
 Lizzy Smith
Myeloma Survivor
Communications Director and Editor, Myeloma Crowd