Consano: Crowdfunding Cures for Uncommon Diseases

February 1, 2016

When it comes to putting your money behind a cure, you don’t always know where that dollar is going to end up. Will it be in the non-profit’s printer cartridge? Will it pay for event space for another fundraiser? While all funds in non-profits are closely evaluated and put to what they know to be their best use—sometimes you, John, the guy whose daughter is finding Ehlers Danlos–just want to put his money towards the vials, material and paycheck of the scientist who will be sitting in that lab testing sample after sample for a cure.

And Consano gets it.

Unlike your standard crowd funding sites, Consano follows a unique process that includes using a team of scientific advisors to vet submitted projects and they then make those recipients responsible for regular updates to their benefactors.

How does the vetting process work? We asked Founder and CEO, Molly Lindquist:

“We work closely with academic institutions to source innovative projects. Their stamp of approval serves as the “first check” of a researcher’s credibility and legitimacy.
Every project on the Consano platform is also reviewed and approved by our Scientific Advisory Board, which is comprised of clinicians, researchers and patient advocates to ensure that every project has the potential to lead to improvements in patient care.”
Who submits projects? The Consano platform has two components. Their first is the crowdfunding projects started by researchers and the second is Honor Funds created by patients/families. Crowdfunding projects are submitted by researchers from academic centers across the country (and world in some cases). Honor Funds are individual fundraising pages that allow families to rally their communities to raise money for the specific research that matters to them (which we think will be particularly useful for rare diseases) without spending the time or money required to start their own foundation. Some families know which researcher they want to support and if not, Consano helps find a researcher using our network of academic center connections that fits with the family’s priorities. We are currently working on the idea of patient-driven research, and I have a case study of a partnership with the Transverse Myelitis Association that I can share with you. We are very excited to provide the opportunity for patients to help drive the research funding agenda.
There are a lot of crowdfunding platforms out there. Here are some of the key questions to ask before thinking about using a platform:
  • What do you want to raise money for? Consano helps individuals raise money for medical research, but there are other sites that enable individuals to raise money for their own day-to-day needs or medical expenses. There are also crowdfunding platforms that help other non-profit organizations raise money.
  • What is the fee structure? Consano only takes out credit card processing fees and funds the remainder of our operating expenses separately through a Portland fundraising event and individual contributions to keep our site operational. Most other crowdfunding platforms take a % of the pledge that ranges anywhere from 5-15%.
  • What is the “perk” that their community will expect from a crowdfunding contribution? Consano is a 501c3 organization, so our “perk” is a tax deduction. Other for-profit crowdfunding sites offer merchandise or other “prize-like” things as their perk.
  • What is the vetting process for projects on the site? This might not be as imperative if you’re pledging to support an artist or product, but when it comes to medical research, peoples’ lives are at stake. Make sure the money is going exactly where you think it is.

The last question, Lindquist says, is the most important to her.

“We do not want to provide people with false hope.”

Hope. Honor. Heal. These are the three actions that Consano assures their uses will make up the foundation of their community. Could this be the next big revolution in rare disease research?

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