The Rare Cancer Research Foundation exists to help researchers
cure all cancers.

 

The Rare Cancer Research Foundation is focused on building extremely high-impact projects that support researchers who want to work on curing all cancers, not just the high-prevalence ones.

Our current focus is on creating biological models of rare cancers that researchers can use to improve their understanding cancer and test their ideas for treatment. Once created, we place all models into the open domain so they are available to any researcher.

Why Focus on Models?

"Rare" cancers kill 320,000 Americans every year and have been under-researched due to a lack of the resources for cancer researchers. If you want to study a particular cancer indication, having samples that you can study and having the ability to test treatment ideas is critical. The easiest way to provide these samples to any interested researchers is to create a model of that cancer that can be replicated in a lab and shared openly.

For over 50% of of cancers, this basic infrastructure that researchers need to do their job hasn't been developed yet. Hundreds of cancer indications don't have a single model available to researchers — meaning anyone that wants to study that cancer has to get access to a lot more money to do their work and needs to take on a great amount of career risk. We surveyed rare cancer researchers in January 2017: respondents told us their biggest research impediments were access to high quality cancer models (number one) and funding for their research (number two). 

Our project, Pattern.org, focuses on building the models that researchers need, then we make them openly available to researchers. We work directly with patient communities to spread the word about the option of tissue donation during a surgical treatment or biopsy.

Once a patient decides to donate their tissue, we work directly with their surgical team to get their tissue sent to a top cancer lab where it can be turned into a cancer model. Our work doesn't change a patient's treatment plan, as the donated tissue was already being removed during their treatment. 

If you're a rare cancer patient interested in learning more — please visit www.pattern.org

 

The Need

RCRF’s works directly to advance efforts to develop new and better therapies to treat rare cancer patients. We focus on high-impact projects that make all of the existing research work in rare cancers cheaper, faster, or better. By making it easier to study rare cancers, we amplify the work of smart researchers and encourage a diverse audience of researchers to enter the field.

This work is critical, and the numbers are tragic. 320,000 Americans, and almost 4 Million globally, die each year due to rare cancers. While each of these diseases may be more "rare" to get, they have a mortality rate radically higher than common cancers.

If RCRF’s work results in better outcomes for even 1% of rare cancer patients, this would represent tens of thousands of patients per year living longer lives, achieving higher quality of life, or both.

The Plan

RCRF is working to ensure that each rare cancer has its own research building blocks. Managing research is expensive and time consuming, but many of those costs are fixed and can be spread across multiple cancers. We leverages economies of scale to enable existing foundations to share solutions and maintain the fundamental research building blocks needed for every rare cancer.

RCRF builds the research infrastructure that enables researchers to focus on novel, incremental innovation. The work we do is openly available to any cancer researchers. We openly partner with foundations and medical research organizations, helping them bring the scale and sophistication to effectively advance a research plan. 

Today, we are predominantly focused on building cancer models through our project, Pattern.org. As an organization, we're always working with researchers to discover other high-leverage projects that we can help with. By building the infrastructure those researchers need and by aggregating best-practices from both inside and outside the cancer research community (our team and advisors range from the former Provost of MD Anderson to leading tech entrepreneurs), we build solutions that achieve both high quality and low cost.

That's our recipe for life-saving innovation.

Our projects:

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cell line prizes

From 2014 to 2016, we offered infrastructure for patient foundations that wanted to offer cell-line prizes.

Prizes were a way to catalyze research attention around a particular indication of cancer. Prizes would be awarded to researchers that could create cell-lines for a given indication, often indications that had limited or no models available for cancer researchers.

There are no current plans to create new cell-line prizes, but there are still 13 cell-line prizes waiting to be awarded.

 
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Pattern.org

Launched in 2016, Pattern.org enables rare cancer patients to direct excess tumor tissue to cancer research.

 

Pattern.org allows patients to donate their cancerous tumors (after they've been surgically removed) directly to researchers. These tumors are sent to a top cancer lab (the Broad Institute of MIT and Harvard), where they are turned into research models that are openly available to the research community.

 

Board of Directors

 
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Mark Laabs

FOUNDER + CHAIRMAN

Mark Laabs is an ocular melanoma survivor. Inspired by the work that his good friend, Josh Sommer, had done to improve the lives of patients suffering from a bone cancer called chordoma, Mark founded RCRF to try to bring innovations from the very best rare cancer foundations to all rare cancers. Aside from his work on RCRF, Mark has extensive executive leadership experience in global renewable energy project development and solar product distribution. As COO of Climate Bridge, Mark was responsible for the development, financing and execution of over 3GW of renewable energy projects in the developing world.

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Benjamin Abram

FOUNDING DIRECTOR

Ben Abram has been a part of RCRF since long before its founding and previously served as a Founding Director of the Chordoma Foundation. Ben is also the founder of Wylan Capital, which develops energy efficiency projects in the U.S. Ben is a Kauffman Fellow in Class XIV, a former Trustee of Duke University, and a sitting Director of the Sall Family Foundation and of FACE AIDS. He has a BSE in Environmental Engineering and Public Policy Studies from Duke University.

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Jyri Engestrom

Director

Mr. Jyri Engestrom is a Finnish entrepreneur, and his daughter is an epithelioid sarcoma survivor. Born in Helsinki, Finland, he graduated with a Master’s degree in Social Science from the University of Helsinki in 2002 and pursued PhD studies in the UK. He is best known as the cofounder and Chairman of Jaiku, which was bought by Google in 2007. He left Google to found Ditto.me, a mobile local recommendations business, which he sold to Groupon in 2012. He holds patents in remote content delivery, content prioritization, and RF tag reading capabilities in mobile devices. A sociologist by training, he is noted for coining the term ‘social object’ to refer to photos, links, and other shareable Web content.

 
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Tyler Willis

BOARD Observer

Tyler Willis is an entrepreneur and investor. He specializes in helping early-stage technology companies scale to world-class businesses. He is the co-founder of Connective and Nomadic Mentors.

Previously, he served as the Chief Marketing Officer of Hired.com (>$100M raised); and held key executive roles at Unified ($44M raised) and Involver (acquired by Oracle).

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Noah horton

BOARD Observer

Named by Inc Magazine as one of the Top 30 Entrepreneurs Under 30, Noah Horton is a Silicon Valley leader with a unique combination of business acumen and deep technical expertise. His experience includes senior technical roles at many of the largest companies in the world, successful experience as a founder and executive, and world-class expertise in machine intelligence, artificial intelligence and cloud computing.

 
 
 

Our Team

We are a diverse team of professionals with strong backgrounds in medical research, technology, and outreach.

 
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David Sandak

Program Director

David is the Program Director for the Rare Cancer Research Foundation and is responsible for helping drive the strategic vision of Pattern.org and identify research collaborations. David is also the Vice President of Research at Accelerate Brain Cancer Cure, a venture philanthropy, which funds translational medical research at leading academic centers and emerging biotech companies. He is responsible for identifying promising academic research initiatives and developing a path to clinical validation, often in partnership with leading biotech companies and venture capital funds. He is a member of the Board of Directors for the Chordoma Foundation. David graduated from Colby College and lives in Boston.

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Barbara Van Hare

Director of Foundation Partnerships

Barbara joins RCRF after a 30-year sales, marketing, and product development career with Hallmark. Her organizational and interpersonal skills, honed by years of working with both small, independent entities as well as world-renowned corporate enterprises, contribute to her ability to multitask and adjust to rapidly changing priorities. Barbara’s ability to work across corporate silos led to her selection to sit on several high-profile task forces. Her focus on client needs and partnerships contributes a unique perspective to the RCRF team. Barbara graduated from Northwestern University with a Bachelor’s degree in Psychology.

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Jason Mitchell

Director of Engineering

Jason has been devising innovative technology driven solutions for over 15 years for both major Fortune 500 companies including MGM Resorts, Georgia Pacific, Home Depot as well as several startups. Prior to working with RCRF, he was a co-founder and CTO at Findyr.com.

 
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Brian McSteen

PROGRAM MANAGER

Brian McSteen has a background in clinical trials program management, previously working with the U.S. Military to coordinate projects for large Southeast Asian and Pan-African cohort studies.  Brian graduated from Duke with a degree in Chemistry.

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Adam Jaffe Back

SOFTWARE ENGINEER

Adam is a fullstack JavaScript engineer with experience building rich, interactive web and mobile applications. He enjoys being part of RCRF’s agile team and contributes to many technological aspects of the organization, with a focus on Pattern.org. Adam spent his undergraduate time mascotting at the University of Arizona and attended Hack Reactor for JavaScript engineering.