Opportunities for Entrepreneurs: Collaborating with Disease Foundations

Discussion with Richard (Rick) Winneker, PhD,

Life Sciences Executive and Consultant

Formerly Senior Vice President, the Leukemia & Lymphoma Society (LLS)


By Marilyn Ferrari, Cesira, Inc.


I recently had the pleasure of speaking with Rick Winneker about collaborating with disease foundations.

Rick has held several pivotal roles in his career, most recently as SVP for Research at the Leukemia & Lymphoma Society (LLS). While at LLS, he built and led a research group focused on improving the standard of care and accelerating cures for patients with blood cancers. He expanded and strengthened LLS’ research staff and portfolio adding more therapy related strategic partnerships and further engaged the academic and biopharma community. Rick is currently using his pharmaceutical R&D and non-profit venture philanthropy experience as an independent consultant based in the Philadelphia area.

Here are some highlights and advice for entrepreneurs from our discussion:

One size doesn’t fit all

Different Models. There are many different funding models used by disease foundations, depending on several factors including the staff’s background in R&D, available funds, and their own experiences with funding biopharma versus academic institutions.

Some foundations like LLS are always looking for strategic collaboration opportunities that can lead to improved outcomes for patients. The program was built during a period of time when both government and venture funding was down and there were many companies or a specific asset that risked dying since they couldn’t get enough critical data to attract funding from other sources (angel, VC funding).

Some foundations use a Request for Proposal (RFP) process, a more formal approach for funding. The RFP states what the foundation is looking for, how companies should apply, then use a peer review or internal process to decide who will get funded. Rick assisted the Crohn’s & Colitis Foundation in launching a more formal RFP-based entrepreneurial funding initiative. Still other foundations utilize an investment model, rather than providing sponsored research funds.

Identifying foundations. The first step is of course finding a foundation working in the relevant disease area. Academic researchers and key opinion leaders in the field can be a great source since they will be familiar with the foundations funding research in their areas.

When approaching a foundation, in terms of getting in front of someone, it is important to gain an understanding of what they are looking for to know whether to push or pull. For organizations like LLS who are seeking new opportunities, a good approach is to reach out to the head of research or business development to see if there is a fit with what the foundation is funding.

Risk tolerance. LLS was really open to considering some riskier projects that may not be ready for other types of funders, so they were filling an important gap to keep a promising therapy moving forward. Risk tolerance depends on the foundation. Often foundations become more risk adverse as they live through individual projects and gain more experience. Given their missions, foundations tend to be less risk adverse than other funders (e.g. angels or VCs). 

Mission driven

During Rick’s tenure at LLS the program was focused on supporting projects from emerging companies that are consistent with the medical needs identified as priorities for the foundation. The goal is to change the disease treatment paradigm and drive towards cures rather than “me too” drugs with incremental improvements. They would typically receive up to 50 project requests each year. About half of those never got past the initial screening simply because they just didn't fit the mission and the expectations for the type of program. The key questions were whether the opportunity addressed a clear unmet need and the company had the team and resources to be successful.  


Skin in the game. In addition to fitting with the mission, another factor that could kill an opportunity would be lack of any money to co-fund the project. Companies who were cash poor had to meet a much higher standard and were unlikely to get support. LLS was looking for the right team with enough money to get to an inflection point and a plan on what to do once they did so. The last thing any foundation wants to do is help a company get from point A to point B and then see the program die. The ultimate goal was about getting the asset to the finish line. 

Not a grant. One of the key messages to any entrepreneur is that these types of programs typically don’t give out grants—the foundation is not going to provide funding and walk away. These are highly collaborative and milestone-oriented projects and the money typically comes in tranches connected to milestone achievement.

High level of diligence. It is important to anticipate the level of diligence that typically goes into reviewing these collaborative project opportunities. Rick has been assisting a young entrepreneur who will come to him with new information saying “I'm ready to go”. However, there is actually more the founder needs to do to make the project attractive to a foundation. Companies should understand there is a higher level of diligence involved than a typical peer review grant process. The discipline and expectations coming from the foundation are positives even though the entrepreneur may not appreciate it at the time.

Understand the terms. One size does not fit all also pertains to contractual agreements with a foundation.  A return on investment should be anticipated as part of the agreement.  Make sure to understand all that is expected as part of the agreement.  Even though LLS was always clear up front about their contractual requirements, getting to the Sponsored Research Agreement was often not that easy. Entrepreneurs need to be clear about the provisions and implications for their company.

Reputation, Knowledge, Resources

Seek out and recognize the benefits of working with foundations beyond just money (this is also true of working with pharmaceutical companies).

It’s striking how many companies understood the value of working with LLS and to be able to claim them as a partner in their future presentations. It communicated the company had gone through their rigorous vetting process and was now working with LLS.

Companies can benefit from foundation diligence not only before a project gets approved but also throughout the partnership. The research team at LLS has biopharma experience and was willing to help companies in any way possible to advance their asset to the next level.  It was like having an extra series of consultants as part of the partnership.   

Well-developed foundations also have extensive networks and can open doors. They have good working relationships with the biopharma companies working in their disease areas.  They can also provide support and opportunities to connect with thought leaders, convene meetings with experts, communicate with FDA on endpoints, and connect with patients and understand their unmet needs. 


Rick shared three final tips for entrepreneurs in working with disease foundations:

Have a plan. You have only one chance to make a positive impression. Bring your best forward the first time and recognize the process is highly competitive, highly vetted, and highly managed.

It’s more than money. A smart approach to foundations is to recognize there is a lot to be gained from the relationship beyond financial support and be open to utilizing it.

Keep the larger goal in mind. Recognize you need to address a priority for the foundations. Wherever you are heading, address a critical unmet medical need for patients. Incremental, “me too” approaches are not going to make the cut.

Thanks to Rick for sharing his experiences and advice!

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