happy birthday to us!
Our first in-person meeting as a board in Malibu, CA in October 2019 (L to R: Luzanne, Barbie, Shawn).
October 2020. This month is the one-year anniversary of our incorporation as an official California nonprofit organization! There are many thoughts to sort through, but today I wanted to tell the story behind our young organization to get you up to speed.
July 4, 2016. I registered the domain name “cureglioblastoma.org” on GoDaddy.com.
It was just over 5 years into my first biotech startup and I had successfully invented and developed a new glioblastoma drug, OS2966, based on my research at the bench. It was the most difficult 5 years of my life, both personally and professionally. A family member was in and out of the hospital (I was the sole caretaker) and the fragile startup was in yet another months-long funding drought. Critical data was being held hostage from us by our vendors because we couldn’t pay the bills. Drug development had to be completely halted.
[This wasn’t the first time.]
I was so frustrated (and worried about paying my own Bay Area rent) that I immediately reached out through my network, began interviewing, and got an amazing job offer at a promising young tech startup in another city. But—after weeks of deliberation and initially accepting the generous offer—I ultimately couldn’t take the job. I was determined to get OS2966 into the clinic and to glioblastoma patients. I believed in it and I knew if I left the company at that time it wouldn’t. I decided to double down, keep fighting, and get this thing done… AND, of course, I built a landing page for cureglioblastoma.org with thoughts toward the future.
[Had I taken the job, my equity in that rocketship company would have been worth 8 figures today.]
February 2018. I noticed two conspicuous new followers on my Instagram. It was former WWE champion wrestler Barbie Blank (aka, Kelly Kelly) and her sister, Mary. I was sooo confused because I had just recently finished watching Barbie on season 3 of WAGS LA on the E! network (reality tv has always been my favorite way to unwind).
But then my heart sunk because I realized it must have to do with what I’m known for on IG: I’m the brain cancer crusader guy. I immediately checked google which confirmed that Barbie and Mary’s father, Ronald Blank, had just passed away from glioblastoma. I wrote to them, sent them free shirts, and let them know we were available for any questions.
Spring 2019. My amazing team had done it. We successfully navigated the FDA process and finally got the green light for our Phase 1 clinical trial. Still, it was the most difficult year yet for me mentally having to move the company across the country to Connecticut and—infuriatingly—coming within a week of having to lay off the entire team due to more funding woes despite our recent FDA victory. I was long burned out and trying to hold things together by seeing TWO therapists. But deep down I knew I had to do what I had to do for my own health and happiness. It was time for me to leave the company I founded.
Summer 2019. I messaged Barbie and asked if she wanted to join me in founding a new brain cancer nonprofit and she was enthusiastic. I handed the reigns to the team and moved to Los Angeles to begin the mental recovery and launch the nonprofit I had dreamt of for over 3 years: Cure Glioblastoma.
Barbie and I met weekly at a local Starbucks ahead of our official launch. In the meantime, we also brought on board a third board member, Luzanne Otte… someone I had also connected with via Instagram in 2018. We had a friend in common and her aunt, Jenny Kanoff Otte, had also sadly passed away from glioblastoma.
Official Instagram launch last fall (IG stories from Maria Menounos, Jessie James Decker, and Nikki Bella).
October 15, 2019. Our official Instagram launch. Barbie’s friends from Maria Menounos to the WWE’s Bella twins, Nia Jax, and Maryse Ouellet to Nick Viall to Jessie James Decker posted Instagram stories about our baby org and we were off to the races!
Winter 2019. The first several months I spent merely trying to get our nonprofit house in order from a state and national regulatory standpoint which, in addition to the holidays, unfortunately delayed our planned celebrity and influencer launch party multiple times. We finally settled on an ill-fated date for our first spectacular gala event to be held at the newly refurbished Griffin Club LA: May 1, 2020. 🦠
Pandemic 2020. With our plan of celebrity gala fundraisers on both coasts no longer possible we had to rapidly adapt along with the rest of the world. We seized the opportunity to begin building our internal programs as leanly as possible. This included all the developments over the summer such as the announcement of our first two Senior Fellows, Drs. John Boockvar and Lisa Haile; the launch of our highly successful Ambassador Program (CGAP); the start of our laboratory operations at BioLabs LA at the Lundquist Institute; and the incubation of our first patent-pending technology we plan to spin out soon.
Today. Our mission is building awareness and solutions for brain cancer. We are concentrating on the areas we see as unmet needs relative to the critical work by other brain cancer nonprofit organizations… approaching the problem from the perpective of someone who fought for over a decade (and nearly gave up more than once) to bring a new glioblastoma drug from the lab bench to the clinic. First, we are building our own internal research programs, both discovery and clinical. Second, we will enable funding for students, startups, and clinically-actionable innovation. Finally, we are partnering with patients and families to help spread the word.
Moreover, we have a very specific thesis for our research: we believe that 1) currently available FDA-approved therapies will not be a long-term solution for glioblastoma (even in combination with each other), 2) harnessing the power of the immune system is the key to curing glioblastoma (i.e., immunotherapy), and 3) a tailored multi-drug cocktail including at least two immunotherapies of different classes is the key to durable responses. The good news is that these drugs already exist. I will outline this putative treatment algorithm in more detail in another post soon to come.
In closing, I am grateful to have had the support of so many people in this new movement and would like to highlight several:
Al Musella and the Musella Foundation for their earliest support of our launch last year through fiscal sponsorship. This allowed us to raise tax deductible donations prior to obtaining our IRS nonprofit status in January 2020. We love Al and Claudia!
All our past and current volunteers including David Giordano (our FIRST volunteer!), Justin Thompson, Manuella Widjaja, Raeesa Kabir, Deny Sung, Lizzii Le, Steve Capone, and Mehran Mortazavi. And special thanks to Jeffrey Lee and Joslynn Jones.
Our Cure Glioblastoma Ambassador Teams: JRo Squad (Jen Rosenthal, Robin Kranich, Nancy Halpern); Team CG Slay (Laura Dill), Team HFC (Emma Astad, Emily Brown, Grace Cruse), and V is for Victorya (Jill Stillman).
All our wonderful individual donors and t-shirt campaign supporters. We can’t do it without you! (Please bear with us as we get our operations process worked out… if you donated and have not received an acknowledgment on our letter head for tax purposes please contact us: hello@cureglioblastoma.org.)
My amazing board. Thank you Barbie and Luzanne for taking the leap with me last year.
Dr. John Boockvar, Vice Chair of Lenox Hill Neurosurgery. We met over 20 years ago and it’s been fun to watch your trajectory. Even better to have you on the team.
Dr. Lisa Haile, Partner at DLA Piper. Thank you for your support for nearly a decade! Great to continue to work with you on this new venture.
My IG squad and IRL friends who have supported us including Dr. Hina Cheema; Dr. Buck Parker; Dr. Staci Tanouye; Laura Gluck, RN; Dr. Renée Rodriguez; Dr. John Paro; Dr. Ali Haider; Dr. Scott Fujimoto; Leah Lowder, PhD; “dancing” Tony Adkins, PA-C; Melanie; Dr. Jennings Gyedu; Katy Basnett, MSN, RN, CPNP-PC; Kristen Schiefer, PA-C; Dr. Morgan Heinzelmann; Zach Dereniowski; Maria Menounos; Maria Quiban; Ian White; Rebecca Farrell; Casey Cohen; Katie Austin; and “Shanonology”.
A special thank you to my friend Elisa Sednaoui. Your work through your foundation inspired me to initially consider the nonprofit path many years ago.
All our followers on social media. We truly wouldn’t exist without the internet community. You could say Instagram incubated our little nonprofit biotech startup. (Yes, our other social accounts definitely need a shot in the arm.)
Our founding corporate sponsor, Barrister Executive Suites; our Brain Tumor Awareness Month sponsor, Viticole wine; and our laboratory provider, BioLabs LA. Thank you to the amazing staff at Biolabs, Gary and Jessica.
Let’s gooooooooo!
W. Shawn Carbonell, MD, PhD
Cofounder & President