Can the Crowd Save
Medical Research?
Scott Finkelstein, MD
Chief Medical Officer
@ConsanoScott
Who Are We?
www.consano.org
v
The Day Our Lives Changed
www.consano.org
The Fog of Cancer
www.consano.org
OurMotivation
www.consano.org
The Current Landscape
www.consano.org
Researcher Challenges
www.consano.org
Key Characteristics
Transparent
Directed
Connected
• 100% of every project donation goes to the research project individua...
You give, THEY decide
You give, YOU decide
Shifting a Paradigm
Take back CONTROL
www.consano.org
The “Aha” Moment
www.consano.org
Our Solution
The Players
www.consano.org
Health Categories
Breast
Cancer
Childhood
Muscle
Cancer
FULLY
FUNDED
Childhood
Brain Cancer
Esophageal
Cancer
Ovarian
Canc...
Young, motivated PhD
Early-stage medulloblastoma research
95th percentile DOD application
Great project that needed fundin...
Key Differentiator: Vetting
• 13 projects launched
• 12 disease categories
• University partners
• 6 current
• 10+ in development
• Nearly $50,000 rai...
Why Do You Donate?
www.consano.org
Importance of the Blog
www.consano.org
Disease Knows No Borders
www.consano.org
Hope. Honor. Heal.
www.consano.org
www.consano.org
@Consano
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Stanford Medicine X: Scott Finkelstein, MD

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"Can the crowd save medical research?"
Stanford Medicine X
Scott FInkelstein, MD
Chief Medical Officer, Consano
www.consano.org

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  • Good morning. My name is Scott Finkelstein and I am very excited to share my story with you today. I’d like to introduce you to Consano.
  • I was in operating room #1 on October 11, 2011. Molly’s appointment was taking too long. Neither of us thought it was a big deal. It was just a small lump. At 2:45 I finally received an email, “Might need a biopsy. Radiologist is concerned.” My heart sank. I opened up the radiology images on the computer, and then I saw it. My wife had breast cancer.At that moment, my world crumbled. I felt trapped. I wanted to run out of the operating room and scream. I wanted to be with my wife. I wanted to give her a hug. I wished it was just a bad dream, but it wasn’t. And my wife, who was only 32 years old, was just beginning the most difficult experience of her life.
  • Because of my supportive colleagues, I was able to accompany Molly through every step of her journey through cancer treatment – surgeries, chemotherapy infusions, and every doctor’s appointment. With the help of our friends and family, meals were cooked, and our 3 and 5 year old daughters were well cared for. Together, we made it through the fog of cancer.
  • And when we emerged, Molly and I wanted to do whatever we could to prevent our girls from facing the same path that Molly had just travelled. And we quickly decided that the only plausible way to do that, was to support medical research.
  • While the government is the largest sponsor of medical research, we discovered 2 ways that we could get involved:We could donate to a large disease-specific organization, and then hope they would decide to fund projects that might help our girls. But since we had no way of directing our donation, nor really have any transparency to the donation, we would never really know HOW or IF our gift was making an impact where we intended.Alternatively, we could search the websites of every major academic center for a researcher who was doing the type of research that mattered to us (genetics, vaccines), and then work with their institution’s development office to direct our donation to fund their project. But unless we were willing to give a lot of money, this level of directability and stewardship was unattainable. (Moreover, it would be very difficult to find out about the research before it has been published)
  • Not loving our options, we decided to look at this issue from a researcher’s point of view. And what we discovered, was that researchers were facing a major funding crisis (and this was even before the federal sequestration). Competition for NIH, DOD, and private grants were at an all-time high, especially for early-stage investigators. And when these promising young researchers fail to fund their pilot projects, many of them leave academia altogether.We are in a golden age of medical research, with advances in genetics and immunology ushering in the era of Personalized and Targeted Medicine. We believe that researchers need a fundraising mechanism that is equally personalized and targeted.
  • In essence, what we were looking for was a platform that was: TRANSPARENT, so we knew EXACTLY what our money was funding – how much was going to research, and how much towards the platform’s overhead; DIRECTED – allowing us to decide where our donation would be spent, deciding which research project we wanted to support and CONNECTED – giving us ongoing updates about the research we were supporting
  • Such a platform would shift the paradigm in medical research philanthropy – from the current nonprofit world of “You Give, THEY Decide,” to one where, “You Give, and YOU Decide.”Control is such a precious thing, and it is so quickly lost during a health crisis. I know we felt like our lives were out of control. We wanted to provide a mechanism to help regain some of that control.
  • Fast forward to a Memorial Day BBQ with close friends, where we were discussing the lack of transparency and control in medical research philanthropy, and it finally hit us. Crowdfunding. It has been so successful for so many other industries. Why not apply that to medical research. Crowdfunding medical research was the perfect companion for personalized and targeted medicine.Source high quality projects from top institutions and institute a review process to ensure that EVERY project is legitimate. Let donors select the EXACT project that matters to them and ensure 100% of their donation goes directly to that project. Allow donors to support the nonprofit platform, but only if they want to, by offering a tip of whatever amount THEY chose. And then require researchers to provide regular updates to their donors -- providing a unique connection that is usually only given to individuals who make very large donations.
  • Consano, which means “to heal” in Latin, a language with deep ties to medicine, was our solution. Designed from a PATIENT perspective FOR other patients, we created our platform to provide Hope. Honor. and Healing. We created a site with a simple, clean design. All projects were not only vetted, but also written in easy to understand language, making complex medical science approachable and relatable.Everyone is touched by a health issue in some way, and often feel very isolated during these times. So we incorporated a way for all donors to share their story upon checkout, honoring their loved ones, and reminding us that we are not alone. Because TOGETHER WE ARE STRONGER
  • You can imagine the reaction we received when this random woman with breast cancer started cold calling academic centers with this “crazy” idea to crowdfund medical research, but this just makes us even more grateful to the institutions who have supported our vision. The University of Washington and OHSU Knight Cancer Institute were our earliest partners, and over the past six months, we’ve added projects from four other top institutions.We have sourced a wide range of projects. From young scientists with a great pilot study, to tenured professors with NIH R01 funded research. Consano’s platform has allowed all of these researchers to raise essential funding for their projects.
  • We started with mostly cancer projects, and given Molly’s story, that seemed a natural fit with our platform. But in talking with other patients, we realized that Consano’s platform could work for any health category. We have now launched 13 projects covering 12 unique diseases – and we have a dozen more in development.These projects cover a broad range of medical specialties: from pediatric to adult, rare disease to common. From rhabdomyosarcoma to Type 1 diabetes. From lung cancer to lung transplant. Despite their differences, all of these projects provide a transparent way to help advance patient care in a targeted fashion.
  • Our first fully funded project is a great example of the type of researcher our platform can help. Dr. Monika Davare is a young, motivated PhD in Dr. Brian Druker’s lab at OHSU.Dr. Druker, who has saved thousands of lives with his discovery of Gleevec, is Dr. Davare’s mentor. She applied for a DOD grant to fund her early stage medulloblastoma research, but despite ranking in the 95th percentile, her project was not funded, missing the payline by 3 percentage points. She separated out part of her research project, an ion channel RNA library, to fund on Consano. And in June of this year, she successfully raised over $6000, fully funding her Consano project. Earlier this month, we were so exited to hear that Dr. Davare received a $250,000 Hyundai Hope on Wheels grant to fund her entire project.
  • One of the most unique aspects of our crowdfunding platform, besides the fact that it’s NONPROFIT and that we take NO FEES to support Consano overhead, is our vetting process. We have assembled a volunteer SAB comprised of a wide-variety of 28 physicians, researchers, and patient advocates who review every Consano project application to ensure it is legitimate, feasible, relevant, and can lead to improvements in patient care. With this review, we ensure that ANY project a donor chooses to support on Consano is high quality.
  • We’re now 6 months old, and we’re growing rapidly. As I already stated, we’ve launched 13 projects in 12 unique disease categories from six universities. We have projects in development from over a dozen other institutions in a dozen new health categories.And despite fairly limited website traffic, we’ve raised close to $50,000 from small and large donations. We’re not talking NIH funds yet, but it’s definitely a respectable start.And our transparent concept is resonating with donors, with over 50% choosing to leave a tip for Consano upon checkout.
  • At the checkout screen, all donors are given the opportunity to share their story. And we have been overwhelmed by the touching tributes that many have left. I would like to share a few with you:Cynthia writes: “My sister was diagnosed with ovarian cancer at 47 and died from it at 49. She was stage 3b when diagnosed and fought a long, hard battle for two years. I have been treated by Dr. Swisher and know first hand how dedicated she is to this cause. I donate because I’d like to help her and other Drs. Prevent this terrible cancer from affecting any other women. And I donate because I miss my sister so much.”Jen writes: “I donate because I believe in the cause and I am a recipient of a double lung transplant by Dr. Mulligan in 2012. My call came, but many will never receive their call. Let’s make it so there is never a question of “if” but rather “when” a patient will receive their gift of life. Thank you for your determination in this area of research.”Thomas writes: “I trust Consano to make my dollars count.”Mika writes: “People come into your life for a reason, a season or a lifetime. A dear friend succumbed to this disease and left this life too soon. I hope my small donation will, in some way, help others have more time with those they love. He is gone but never forgotten and my life is infinitely richer due to his presence.”
  • On our blog we have featured dozens of stories about how people have been touched by illness. Some of these stories have come from well known individuals, such as Olympic gymnast Shannon Miller and young cancer survivor Jonny Immerman, but most are from regular people who have real illnesses and have graciously shared their story. Reminding us that Together, we are stronger.
  • Despite our limited traffic, we’ve actually garnered a fairly wide audience. People all across the world have shared their thoughts about Consano. I can’t understand all of these tweets, but I did use Google Translate to make sure there weren’t any bad words in there. The support we have received has been overwhelming, and we are so grateful to those who have helped spread the word about Consano. Seeing this worldwide reach tells us that our platform really is universal, and that disease knows no borders.
  • I never couldhave imagined being right here in front of you when I felt so trapped in that cold operating room 2 years ago. But in that time, Molly has healed from breast cancer. Our entire family has healed. And by creating Consano, we have regained some of the control that we lost so quickly on that October afternoon. And our greatest hope is that, through Consano, we can help bring some of this healing to others.
  • Stanford Medicine X: Scott Finkelstein, MD

    1. 1. Can the Crowd Save Medical Research? Scott Finkelstein, MD Chief Medical Officer @ConsanoScott
    2. 2. Who Are We? www.consano.org
    3. 3. v The Day Our Lives Changed www.consano.org
    4. 4. The Fog of Cancer www.consano.org
    5. 5. OurMotivation www.consano.org
    6. 6. The Current Landscape www.consano.org
    7. 7. Researcher Challenges www.consano.org
    8. 8. Key Characteristics Transparent Directed Connected • 100% of every project donation goes to the research project individual has decided to support • Organization overhead is supported separately through individual donations, corporate sponsorships and foundation grants • Each project specifies exactly what the money will be used to fund • Individuals decide exactly which project to support, easily connecting with research that matters to them • Researchers provide ongoing updates about the project, keeping communication open with their donor group • Donors can share their stories and read the stories of others impacted by disease www.consano.org
    9. 9. You give, THEY decide You give, YOU decide Shifting a Paradigm Take back CONTROL www.consano.org
    10. 10. The “Aha” Moment www.consano.org
    11. 11. Our Solution
    12. 12. The Players www.consano.org
    13. 13. Health Categories Breast Cancer Childhood Muscle Cancer FULLY FUNDED Childhood Brain Cancer Esophageal Cancer Ovarian Cancer Lung Transplant Maternal /Fetal Health Palliative Care Uterine Cancer Lung Cancer Pancreatic CancerIn the pipeline: Cord Blood Childhood Leukemia Colorectal Cancer Type 1 Diabetes Prostate Cancer Melanom a Sarcoma Transverse Myelitis Oral Cancer Leukemia Metastatic Breast Cancer Launched: Fanconi Anemia Type 2 Diabetes www.consano.org
    14. 14. Young, motivated PhD Early-stage medulloblastoma research 95th percentile DOD application Great project that needed funding June 2013: Fully funded Consano project Sept 2013: awarded $250,000 Hyundai Hope on Wheels grant Fully Funded Dr. Monika Davare www.consano.org
    15. 15. Key Differentiator: Vetting
    16. 16. • 13 projects launched • 12 disease categories • University partners • 6 current • 10+ in development • Nearly $50,000 raised • Over 50% of donors leave a “tip” Six Months Old www.consano.org
    17. 17. Why Do You Donate? www.consano.org
    18. 18. Importance of the Blog www.consano.org
    19. 19. Disease Knows No Borders www.consano.org
    20. 20. Hope. Honor. Heal. www.consano.org
    21. 21. www.consano.org @Consano

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