Why I Started My Nonprofit: With Tracy Ryan of SavingSophie.org

‍I had the pleasure of interviewing Tracy Ryan. Tracy is the award-winning mastermind behind CannaKids and the nonprofit SavingSophie.org. What started as a brain tumor diagnosis in her infant daughter when she was only 8 1/2 months old, has turned into a silver lining that legends are made of. With research going on both locally and abroad, and a globally recognized product line under her CannaKids brand, Tracy has indefinitely become one of the leading trailblazers in cannabinoid therapy for medically fragile patients.

Thank you so much for doing this with us! What is your “backstory”?

When my daughter was first diagnosed with brain cancer in 2013, my husband and I truly thought our lives were over. Through a chain of events on social media we were connected to Ricki Lake and Abby Epstein who had just begun filming their documentary, now titled Weed the People. It was these women who brought us all the scientific data on cannabis, and what we found was shocking! There had been promising cannabis research going on for years, but yet no one was talking about it. With chemotherapy being the only option for our daughter we did a deep dive of our own into any clinical studies we could find online. After not being able to find anything that even remotely scared us, we presented this to Sophie’s team of oncologists and they agreed to support us giving it a try. At just nine months old Sophie took her first dose of Cannabis Oil on camera. This scene is shown in the documentary that will be out this fall.

Can you share the funniest or most interesting story that happened to you since you started your company?

One of the most amazing events we’ve seen take place was when a young man by the name of AJ came to us with only 90 days to live. He had Osteosarcoma that has recurred six times in only three years, and this boy had been through unimaginable torture. He’d had a lot of surgeries to remove bones and ribs that were covered in disease. The years of chemo and radiation showed on him, as he was very pale and thin. His doctors had literally given up on him, and told his parents to seek alternative homeopathic options since they had nothing else to offer him. Luckily, he found his way to us.
AJ had been taking OxyContin and Norco around the clock for pain at only 16 years old. But within three days of starting the cannabis he no longer needed these extremely potent opioids. When the 90 day mark came around and he was still alive and doing much better, AJ‘s oncologist finally convinced his parents to do one more scan. What the doctor found on the scan was remarkable! She came back into the room where the parents sat, looked them in the eyes, and said, “I don’t know how to tell you this, but all of AJ’s cancer is completely gone!” That was over 3 1/2 years ago and AJ is still cancer free to this day. He takes Cannabis Oil every single day of his life, and he is now part of pre-clinical trials that we’re currently doing in collaboration with one of the leading universities here in Southern California. My daughter, another little girl who should have succumbed to her disease 2 ½ years ago, and one of our adult cancer patients are also enrolled, with plans to enroll many more patients.

What do you think makes your company stand out? Can you share a story?

CannaKids is unique in the fact that we have such a huge focus on using cannabis oil for medically fragile patients, with a focus on pediatrics. We don’t just focus on one type of ailment, we really cover it all! We work with patients of all ages but kids have always been such a passion of mine. Especially after my own child was diagnosed with brain cancer. CannaKids also has medical professionals that patients can book a dosing call with to help them better understand what medicines they should be taking and how for their specific conditions. I’ve raised money through Cure Pharmaceutical to fund pediatric and adult cancer research in Israel at the Technion Institute where we just completed year one, with three more years of research to go. We have such a focus on the science, and truly strive to provide protocols based on our patient data we have tracked for years, and published research science from renowned researchers around the world.

None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are? Can you share a story?

I’ve been very blessed to have many people in my life help and support me along the way. It would be impossible to only choose one. But the person who’s had the most impact on me as a human is my father. I got a lot of love as a child. I was constantly reminded that I could be anyone I wanted to be, and do anything I wanted to do. I can literally hear those words echoing in my head at this very moment. I’ve always had this sense of fearlessness that started when I was very young. I’ll never forget as a little girl going up to that measuring stick at the theme park to see if I was tall enough to get on roller coasters with my dad. I remember the very first time I was tall enough and the excitement I felt as that coaster took the curves and went over the hills with great force. From that day forward I was an adrenaline junkie and adventure seeker, and my dad helped to foster that in me. Knowing that I make my father proud is one of the things that truly drives me every day. He’s an amazing man, and I’m truly blessed to have him as my dad.

Are you working on any exciting projects now?

We have a couple of amazing research projects that are currently underway, but the one I’m most excited about is our most recent one with an incredible research scientist at a top university here in Southern California. Our scientist is the world leader in the understanding of NK Cells, which are the natural killer cells that keep cancer in our body at bay. She holds many patents and is about to begin human trials in China, and here locally at a top hospital. She’s been published many, many times, and utilizes “humanized mice” which pump human blood. To say she’s brilliant is an understatement! Due to the sensitive nature of cannabis with this university, we will be officially announcing our collaboration upon their approval, which we hope will happen soon.
When my daughter Sophie had her second brain tumor surgery on April 23 of this year to debulk one part of her tumor that’s been a little bit troublesome to treat, I knew I had an opportunity to get Sophie’s brain tumor cells, and hopefully find someone to implant them into mice for further research. My daughters type of tumor gets zero research so I am literally her only hope at finding a cure. Through some random circumstances, I crossed paths with my dear friend Nurse Cara Lunsford at our kids’ school. She immediately connected me with our research partner, and she was ready and willing to help!
On the day of Sophie’s surgery at CHLA, her tumor cells were couriered straight to the lab while Sophie was still on the operating table. I went up to pathology myself to get the packages ready and see them on their way, and for the first time I looked her beast in the eye. What happened next has forever changed our lives.
When our researcher began studying Sophie, what she was finding was incredible! She was seeing very unique reactions in Sophie‘s body due to the Cannabis Oil that the medical journals couldn’t explain. We’ve since enrolled two of our other pediatric CannaKids cancer patients who should have succumbed to their diseases years ago, and she discovered the same reactions in them, as well. We now have a much better grasp as to why my child has been such a miraculous healer over the last five years. For example, after her brain tumor surgery that resulted in them cutting her from the middle of her forehead to the bottom of her right ear, she didn’t have one single bruise on her entire face, no signs of visible swelling, was released from the hospital in less than 48 hours, and was told she could return to school in the next 1–2 days. None of these facts I have just mentioned are even remotely close to normal, and to quote one of her surgeons, “If we have ever even seen this kind of response in this hospital, it would be so rare!” They all truly looked at her as if she was a unicorn.
We’re now planning a fundraiser at the Hollywood Roosevelt Hotel on October 12th called “The Saving Sophie Experience: A Journey to Find the Cure” with hopes of raising at least $160,000 over the cost of the event. These funds will be donated to this research so we can enroll more patients, and work towards a new cannabis therapy for the treatment of cancer. https://savingsophie.org/event/

Can you share 3 things that most excite you about the Cannabis industry? Can you share 3 things that most concern you?

What most excites me about cannabis is the potential for healing that I’m seeing in so many different diseases in both the young and old. I’m also very happy to see the conversations really changing across the globe and legalization that’s happening everywhere.
I am most distressed about how difficult it is for us to do research currently. The DEA is still standing in our way of getting Schedule 1 licenses to study this plant more closely. If my researcher and I could just get cannabis into her animal models, we could potentially have profound answers in a very short time that would truly help us in battling cancer for the young and old alike.
Legalization in California is absolutely beating us, and everyone else up. It has become so difficult to operate in this state that many brands are either going under, quitting the business altogether, or moving out of state. The fact that we have so many restrictions on a plant that is so beneficial, and cannot kill you is honestly depressing. It has been a real struggle for us to keep our heads above water. The lawmakers have even admitted they didn’t think about the patients when making these laws. For me to continue donating free medicine to our very poor patients, it is now considered tax evasion. We are fighting hard to make changes to many of these laws so brands can thrive.

In our experience when people are passionate about what they do they are more successful. Where does your passion come from?

My passion clearly comes from trying to help my own daughter beat her cancer! After really truly understanding how difficult it is to be a cancer parent, I also don’t want other parents to have to go through what we had to go through. And compared to other kids who have these awful diseases, our journey has been a much easier one, and yet still a complete and total nightmare of a roller coaster. Because of what I’ve seen using cannabis for serious disease I now truly believe that a lot of people are suffering that wouldn’t otherwise have to. I really want to see this world become a healthier place for everyone living in it, and I’m also sick of going to kid’s funerals. No parent should ever have to bury their child!
I really hope to be in full-blown human trials in the next five years using our formulations and existing research to help heal children stricken by horrible disease. I really see this industry shifting and moving more towards medical research. I think we’re going to see a lot of people jump on board and work towards getting more cannabis derived pharmaceuticals into the marketplace.

Can you point out some of the rising stars in your industry?

I have so many friends that are doing incredible work in this space! Josh Crossney has one of the most incredible conferences called the Cannabis Science Conference in Portland, Oregon. It brings together some of the brightest scientific and medical cannabis minds in the world, and I couldn’t be prouder to call him my friend.
Autumn Karcey is another brilliant mind, and one of the top five designers of clean room grows in the world. She’s designed over 1.5 million square feet in just the last two years. To meet my tiny friend with her beautiful blonde hair, and outgoing attitude, you would never know how brilliant her mind is, and in a very heavily male dominated industry.

What do you think will be the next “big thing” in your industry?

Honestly, the medical sector! So many people are focused on recreational and the green rush, but I predict medical will surpass this in the future!

Some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US with whom you would love to have a private breakfast or lunch with, and why? He or she might just see this if we tag them 🙂

I have always wanted to be friends with Drew Barrymore! She and I are the same age, so I grew up watching her films and admiring her from afar. I had the pleasure of meeting her once for 30 seconds at a party for a magazine cover she was on, and she is the one celebrity I have ever met where I thought I was literally going to faint! Haha. She is also very involved with CHLA where she visits the pediatric cancer patients every year, which I really admire. She’s made an amazing career for herself, and known as one of the nicest people in Hollywood. She’s someone women can look up to.
The other person would be Sanjay Gupta. When telling our story, I refer to us as pre-Sanjay since we came out about Soph’s cannabis use two weeks before his “Weed 1” documentary aired on CNN. I truly want to hug his neck, and let him know how grateful I am, as it was him that really created the shift in the cannabis conversation.

How can our readers follow you on social media?

You can find CannaKids on Facebook at https://www.facebook.com/MyCannaKids/ and on Istagram @mycannakids. Our Saving Sophie Foundation pages are on Facebook at https://www.facebook.com/SavingSophieFoundation/ and on Instagram @savingsophie.