While I was confident that my network of loving family and friends would be incredibly supportive, I did not fully comprehend the challenges of raising donations and sponsorship contributions. Individuals and business owners who know me, or may have already been aware of PKD, have been incredibly generous, but raising money from new connections has a very high initial ‘rejection’ rate and requires clear messaging, a direct line of sight for donors between their contributions and what they will be used for, regular follow up, and significant persistence!
As part of my series about “individuals and organizations making an important social impact,” I had the pleasure of interviewing Glenn Frommer.
In 2015, Glenn Frommer was diagnosed with Polycystic Kidney Disease (PKD). As a venture capitalist, avid cyclist, and philanthropist, Glenn launched the RideForPKD and is on a mission to raise more than $500,000 specifically to support the PKD Foundation (PKDF) with critically needed funding for research into the disease and to raise awareness of PKD.
Beginning on May 1, 2022, he will be riding his bike more than 5,300 miles across the United States to raise awareness and significant donations for PKD. He will start the Ride in Northern California and, over four months, will make his way across the Rockies, through the Plains to St Louis, up to Chicago, and down to Washington, DC. Then, he’ll ride up the eastern seaboard and end his cross-country journey in Boston.
Thank you so much for joining us in this interview series! Can you tell us a story about what brought you to this specific career path?
In 2018, I retired from my career running large multi-national companies and wanted to uncover a new ‘purpose and meaning’ for my life. I was invited to join the PKDF’s research grant review committee and realized that the Foundation desperately needed funds to support research institutions to find treatments and a cure to support our community of 600,000 Americans who have PKD. The intersection of my passions — starting up new endeavors, cycling, philanthropy, and desperately wanting to help end PKD for our community of 600,000 — led to getting more actively involved in supporting the PKD Foundation and the creation of the RideForPKD.
Can you share the most exciting story that happened to you since you began leading your company or organization?
I was on a flight recently, and I started to talk to the person in the seat next to me. He asked what I did, and I told him I was taking a break from venture capital investing and had started a non-profit. When I handed him a brochure explaining the RideForPKD, he did a double-take and exclaimed, “you have got to be kidding me!”. It turned out that this gentleman, the CEO of one of Colorado’s largest regional banks, also has PKD and recently received a kidney transplant. His organization has since become one of our biggest sponsors, and he has encouraged others in his organization to get involved. Two lessons learned — it pays to talk to people on planes, and PKD affects many individuals and their families.
Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
As a previous CEO of several companies and an active investor in start-up companies, I thought I had the right skillset for starting a new non-profit. Jeez, was I wrong! I had zero experience in non-profit fundraising, securing sponsorships, planning a 4-month 5300-mile bike journey, establishing a digital and social media presence, designing merchandise and riding gear, and more! Thankfully I have surrounded myself with a fantastic group of volunteers helping me with these challenges and more. To go from the initial concept — starting a non-profit to raise funds for the PKDF — to executing every one of these critical elements has been a full-time arduous task, and I’m so proud and thankful to be supported by so many.
Can you describe how you or your organization is making a significant social impact?
PKD is an inherited genetic disease in which clusters of damaging cysts develop primarily within your kidneys, causing your kidneys to enlarge and lose function over time. PKD is progressive and affects more than 600,000 Americans and 12.4 million people worldwide.
Currently, there is no cure or effective treatment for PKD leaving millions of people at risk of developing cysts on their vital organs (not just one’s kidney) and high blood pressure, and ultimately kidney failure.
Only 10–20% of grant proposal requests made to the Foundation are funded, and it costs $160,000 to seed fund a research project to help find a cure. I decided to focus my energies on support for the PKD Foundation’s research program, as well as serving on the Advocacy Champions Network to advance our advocacy initiatives — like the Living Donor Protection Act — and lobbying to garner additional research support from the NIH, NIDDK, and DOD. By raising over $500,000, we will be able to support the research program of the PKDF and hopefully have a significant impact to #endPKD.
Can you tell us a story about a particular individual impacted or helped by your cause?
Through the creation of the RideForPKD, I have had the privilege of presenting to many groups interested in learning more about the disease, including chapters of the PKDF. I have stressed the importance of early screening, education, involvement in the PKDF’s Registry, and participation in dozens of clinical trials across the country. We are raising awareness, providing relevant information, and raising research funds to impact our entire community, including those who may not yet know that they have the disease.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
The community can help support the RideForPKD and the PKDF in three ways. They can 1) donate to the Ride at www.rideforpkd.org to help us exceed our $500,000 goal, 2) check out our website and sign up to join any segment of the Ride in any city from San Francisco to Massachusetts, and 3) volunteer to help support our efforts during the four months on the road. Companies can help by joining our growing list of nearly 40 sponsors for the Ride. Politicians, many of whom we plan on a meeting when we are on the steps of the Capitol in August, can help by supporting the Living Donor Protection Act and additional PKD research support from NIH, NIDDK, and DOD.
What are your “things I wish someone told me when I first started,” and why? Please share a story or example.
While I was confident that my network of loving family and friends would be incredibly supportive, I did not fully comprehend the challenges of raising donations and sponsorship contributions. Individuals and business owners who know me, or may have already been aware of PKD, have been incredibly generous, but raising money from new connections has a very high initial ‘rejection’ rate and requires clear messaging, a direct line of sight for donors between their contributions and what they will be used for, regular follow up, and significant persistence!
You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂
The ultimate goal is to help find a cure for Polycystic Kidney Disease by raising critically needed funding. One way to do that is by writing checks to the PKDF (which is undoubtedly VERY important). However, the concept behind the RideForPKD is one around “leverage” and demonstrating how to effectively lever one’s resources, networks, and skillsets to raise much more in funding than the capital which has been invested. This concept of earning a high ROI on an investment is well-known in business but less so in philanthropy, where so many people (including me before creating the RideForPKD), write checks which go directly — dollar-for-dollar — to a charity. The power to instead take those charity dollars and invest them in a high ROI endeavor like the RideForPKD ultimately provides significantly more net funding to the PKD Foundation thanks to the generosity of donors and sponsors who likely would have never funded research in PKD. This is a true win-win for all involved and something for all philanthropically-minded people to consider.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
“When life gives you lemons, make lemonade.” We all know this proverbial phrase encourages optimism and a positive can-do attitude in the face of adversity or misfortune. When I was diagnosed with PKD, I chose to accept the brutal fact that my life, like that of so many others, was going to fraught with health challenges. I decided not to take the news lying down. I got involved in deeply researching the disease, integrated actively with the PKD Foundation, joined clinical trials to test out therapies and nutritional interventions, joined the Foundation’s Research Grant and Advocacy Champions networks, joined the PKDF Registry to share my story, and created the RideForPKD. I’m making lemonade, not just for myself but for the 600,000 Americans currently suffering from the disease and for their future generations so that we may potentially help them avoid suffering from the disease.
Is there a person in the world or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂
Bill and Melinda Gates. They have effectively deployed their vast fortune for the good of society and have leveraged their resources — intellect, caring, wealth, and desire to make positive change — to work on solving so many of the world’s significant challenges, including eradicating diseases. I’m inspired by their work and commitment to ‘do good’ for others, and hope to live the remainder of my life doing the same.
How can our readers follow you on social media?
- www.rideforpkd.org
- https://www.linkedin.com/company/ride-for-pkd/
- https://www.facebook.com/RideForPKD2022/
- https://www.instagram.com/rideforpkd2022/
- https://twitter.com/RideForPKD2022
- https://www.youtube.com/channel/UCVwctaodKGH01jbb7P0jXpQ
This was very meaningful, thank you so much. We wish you only continued success on your great work!
Social Impact Heroes: Why & How Glenn Frommer of RideForPKD Is Helping To Change Our World was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.