Dear Friends and Family,

I wanted to take a moment to share with you a bit of what is going on in my life.

Most of you know about my journey with Cutaneous Lymphoma (Sezary Syndrome) which means most of you also know the passion I hold for my team at Stanford. Their research has not only kept me alive but it has given me a quality of life I would not have had otherwise. 

Back in 2015, as they were doing all the screening and blood work to prep me for a possible stem cell transplant, I had the honor of being patient 12 on a Phase III randomized control trial for a drug called Mogamulizumab. Initially I was randomized to a drug called Vorinostat but fortunately was crossed over to Moga after not getting any relief. Not only was Moga a wonder drug for me; it was eventually FDA approved and has become a wonder drug for many more patients across the country. To say I’m proud of being a part of that trial is an understatement… knowing that my participation helped get it through the FDA goal line making the drug accessible to thousands of people truly gives me purpose to having this disease. 

That said, Moga was not the end to this cancer. As of now, there is still no cure.  

Fast forward to December of 2023…. the redness resurfaced, the dryness and scaling spread, the itchiness began, the weeping skin started…. unfortunately my cancer found a way around my immune system.  It’s back.  

Since then, I have tried three different treatments, all of which have failed. This brings me to the first of two points of this letter.

Firstly, I am excited to announce and to express that I am so so soooooooo fortunate and blessed to be with my team at Stanford because I have access to a new trial drug! This time is different though because it is a Phase I trial AND I am patient number one at Stanford!  I went through all of my prep work…. PET scan, Chest x-rays, EKG, loads of blood work and got the O.K. to be on the trial.  My first infusion took place on Monday, March 10th. I’m more excited than scared because I know that I have the potential of, once again, helping thousands of patients who have this really miserable, ugly, in your face disease. So please… send me good vibes and love. Thank you!

My second part of this letter is to let everyone know that I was planning to have another fundraiser for my team’s research in May of this year. Unfortunately, due to my cancer resurfacing and my blood numbers rising, I am having to postpone the fundraiser to concentrate on healing my body. Hopefully I will be able to host the fundraiser in 2026 and bring everyone together again to meet my medical team. Not only do they deserve to showcase their brilliance, but also their HUGE hearts. It makes me incredibly sad and frustrated to know that I can’t do it this year as I had set a goal to raise $2.5 million to help support an in-house Phase I IND (Investigational New Drug) trial for an individualized immunotherapy vaccine treatment that might actually be curative.  

Amazingly, of that $2.5 million, I’ve already received support of $1 million from a dear dear friend! The generous donation has inspired me to try and reach my goal while I’m going through this trial. My hope is that when I do host an event, it will be a celebratory one demonstrating the tangible results that come from research and trials (and of course, that I will be the happy, healthy patient to prove it!!!)

If you feel moved to donate, you can do so on this website by clicking the “Donate For a Cure” button located on the header bar. And whether you donate or not, sharing my website with even just one persons spreads awareness that the community so desperately needs.  My website is more than just the story of my journey; it is a testament to what science can do, the absolute importance of research, and acts as an oasis of hope in finding purpose and meaning during challenging times. I know some of you have been on similar journeys and I hope you agree. 

I will be updating my website regularly with videos, as well as information on my cancer and the research my team at Stanford is doing.  If you choose to donate, it’s important for me that you know that your support goes directly to the team to support their research. And of course every donation is 100% tax deductible.  

Outside of my cancer world I am pulled to write this... in this world of chaos and extremes…. may we ALL come together in COMMUNITY and CURIOSITY... and LOVE on each other… it’s what HUMANITY needs. 

Sending a HUGE amount of love to all of you. THANK YOU FOR BEING ON THIS JOURNEY WITH ME and holding the space for me to share it with you.

❤️
Jen