Why I Created a Crowdfunding Platform for Medical Research
My own daughters were only three- and five-years-old when I was diagnosed with breast cancer in 2011 at the age of 32. I endured a bilateral mastectomy and chemotherapy, and came out of active treatments knowing that I wanted to do anything I could to help prevent my girls from walking this same path, knowing that I would go through my own journey over and over if it meant that my kids didn’t have to know this same reality.
I knew that I wanted a transparent, directed, and connected way to support medical research that would specifically impact my girls (genetics, vaccines, etc.). And I knew I wasn’t alone in looking for these things. So, I created a crowdfunding platform for medical research called Consano.org.
The Power of Community
Consano means “to heal” in Latin, and that is really the ultimate goal of medical research, that it will lead to better care, treatments, and survival. Our mission is simple: To provide a platform to enable individuals to donate directly to specific medical research projects, advancing medical progress and empowering individual action. I am a firm believer in the power of community, and crowdfunding epitomizes that for me. Together, we are stronger. Because Consano was created from the perspective of a patient, the guiding principles are the ideas of hope, honor and healing.
The dictionary definitions of “heal” include:
- To restore to health or soundness; cure.
- To set right; repair.
- To restore (a person) to spiritual wholeness.
How to Make Change Longterm
Our first fully funded project was a childhood brain cancer project from Dr. Monika Davare out of the OHSU Knight Cancer Institute, who was looking for more targeted therapies for medulloblastoma. Medulloblastoma is the most common brain tumor in children with the median age of diagnosis at 8.7 years old. Not only do these kids go through aggressive chemotherapy and radiation as part of their treatment, but they often face detrimental long-term effects as a result of these treatments. Dr. Davare had scored in the 95th percentile for a Department of Defense grant, but missed out on the funding as the DOD only funded the 98th percentile. This competitive research funding landscape is not uncommon.
Dr. Charles Keller, also of OHSU Knight Cancer Institute, is also doing some wonderful research on childhood muscle cancer (rhabdomyosarcoma). This form of cancer is extremely difficult to cure when the cancer cells have spread throughout the body (metastasized). Dr. Keller’s lab is a collaborative effort with molecular biologists, stem cell scientists, biochemists, clinicians, and electrical engineers—all working together on this research to hopefully help overcome the challenges that prevent children from remaining disease-free from this form of cancer.
Keeping Hope Alive
As a mom, lack of funding for such research makes me question what advances and improvements are possible. Hope is being lost each time a promising investigator misses the pay-line. I hope that, in addition to bringing back some control into the lives of those impacted by illness through this direct connection to research, Consano also provides an innovative way for scientists to get more of their research funded, to find better treatments, to improve survival rates.
We might survive cancer, but how do we ensure that we go on to live, to thrive? Hope, to me, is the maternal instinct I feel as I look at my daughters. I want to make things better for them. I want the world to be a better place for them. I want breast cancer to become a benign concept to them, something that I faced as a young woman, but not something that is a part of their every day (as it is for me). Each story I hear from other families impacted by cancer just reinforces that hope for me, the hope that the suffering, pain, and loss experienced by so many at the hands of this awful disease will lessen, that we can all have a part in making things better.
Consider donating to Consano for #GivingTuesday. First 50 people who donate at least $50 get a $50 Consano gift card to give back to research.
This project is part of GOOD's series Push for Good—our guide to crowdsourcing creative progress.