July 16th Chat – Bringing “the crowd” to medical research philanthropy

Molly Lindquist with her girls

Guest Blog by: Molly Lindquist & Scott Finkelstein (www.consano.org)

I grew up knowing that my Grandma Caroline passed away from breast cancer at the age of 46. She died six months after the death of my grandfather from esophageal cancer in 1955, orphaning my dad at the age of eight. That is why, when I felt a lump during a self exam, I knew I had to check it out even though I kept telling myself that “it is probably nothing.” When a breast ultrasound led to a mammogram, which led to an immediate breast biopsy, it became apparent that my lump was highly suspect. “We strongly suspect that this could be cancer.” Cancer. The weight of that word crushed me. And my life changed forever.

I am so grateful for the medical advances that have occurred since my grandmother was taken by breast cancer, but I want things to be even better for my own daughters. I couldn’t find an easy way to direct my donation to specific medical research projects that might help my girls (genetics, vaccines, etc.) without:

  1. Visiting numerous academic websites,
  2. Hoping their research was viewable on their site,
  3. Hoping the research was explained in a way that this non-scientist could understand,
  4. Finding the appropriate contact in the development office who could help me direct my donation to the project that resonated with me (particularly difficult given this was not going to be a “sizable” contribution).

Also, I was not comfortable donating to a large organization that would decide where my money would be directed. I had lost much of the control in my life after my cancer diagnosis, and the last thing I wanted to do was relinquish the control over what my money would support. In talking with other patients and families touched by health issues, I realized that I was not alone in this desire for greater control and connection. So I decide to create this funding mechanism myself (using the existing and successful idea of crowdfunding), and Consano was born. You can see a short video with this background at https://www.consano.org/about/video

Usually medical research is paid for by large grants from government or other large funding institutions. Consano is part of a new movement to connect individuals directly to specific medical research projects that matter to them.

  • NON-PROFIT: 100% of your donation (less a minimal PayPal processing fee) goes directly to support the project of your choice. Consano takes no percentage of project donations.
  • TRANSPARENT: Each project is written in a way that even us non-scientists can understand. Also, within the project description, each researcher details exactly how your money will be spent.
  • DIRECTED: You have the power to direct your donation to the project that resonates with you.
  • CONNECTED: Stay informed throughout the lifecycle of your project via regular updates from the researcher.

Scott, our Chief Medical Officer, has worked very hard at creating relationships with a variety of academic institutions to source high-quality and internally reviewed research projects from the following areas:

  1. Well-funded, well-published researchers with a compelling new project.
  2. Intra-university seed money competition winners (peer reviewed projects).
  3. Ongoing funded projects with additional financial needs (bridge funding).
  4. Projects that fell just below the National Institute of Health (NIH) or Department of Defense (DOD) grant payline (peer reviewed). These governmental agencies have very rigorous standards, but the number of projects that are funded continues to shrink. This will only be exacerbated by the impact of sequestration.

Scott has assembled and leads a 28-member volunteer Scientific Advisory Board (comprised of researchers, clinicians and patient advocates). Once a project has been submitted, it is reviewed by members of the SAB who ensure the project is easily understood, relevant, and has the potential to lead to improvements in patient care.

We’ve been live for three months and have raised over $40,000, have fully funded one project (pediatric medulloblastoma out of Dr. Brian Druker’s lab at OHSU Knight Cancer Institute), and are working to expand our project health categories and include additional university partners. It has been such a wonderful healing process for us to take my cancer journey and turn it into a way to help others. Hope. Honor. Heal.

Questions:

  • T1: As healthcare leaders, what do you see as the benefit of a platform like Consano for Patients and Researchers? Challenges?
  • T2: Who do you think might be most open to using the Consano platform and how can we reach them?
  • T3: Scott will be presenting Consano during #MEDX. What information do you think is most important for him to share during this medical conference?

Join us Tuesday night at 8:30pm Eastern Time (North American) for #HCLDR chat featuring our special guests Molly Lindquist @ConsanoMolly and Scott Finkelstein @ConsanoScott.

Sources:

Molly’s Ignite TAO Presentation: http://www.zentation.com/viewer/index.php?passcode=23Jbk3DQQm

Consano “about” video: https://www.consano.org/about/video

Tech Crunch Interview: http://techcrunch.com/2013/07/05/consano-crowdfunding-cancer-medical-research/

Interview videos with Molly: 

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