Rylie Maedler, age 13, is the youngest CEO in the cannabis space, heading the charge of her research and development company Rylie’s Sunshine – dedicated to creating safe and affordable cannabis oils for kids living with debilitating illnesses. When Rylie and her mother Janie show up to the DOPE Magazine headquarters, Rylie is pulling her carry-on luggage across the bumpy sidewalks, wearing a big toothy grin from ear-to-ear. The elastics on Rylie’s braces are bright blue — blue denim is the international ribbon color symbolizing hope for the more than 7,000 small rare disease communities around the globe, she later explains. The blue bands symbolize her dedication to bringing awareness to rare diseases, but the braces themselves are a reminder that she is lucky to have her teeth at all.
In 2013, Rylie’s face began to swell, and her teeth began falling out at a rapid and suspect rate. Rylie thought, “’Yay! I’m going to be rich with tooth fairy money,’ but I could tell my mom wasn’t excited for me. She looked scared, and she got even more scared when my face started looking different.” She had contracted a rare, destructive bone disease of her jaw.
Janie decided it was time to head to the doctor. Weeks passed, and hundreds of tests were performed. The diagnosis was aggressive giant cell granuloma (AGCG). The disease’s cause is unknown, and it tends to rear its ugly head again and again in patients despite treatment attempts. This type of granuloma is thought to have only been found in very few people worldwide … to call it rare is almost an understatement. In Rylie’s case, AGCG also resulted in debilitating and painful seizures.
At the time of diagnosis, the Maedler family was faced with few options for treating Rylie. One option was FDA-approved Denosumab, which is used to treat patients with bone cancer, bone loss, osteoporosis and giant cell tumors of the bone. The other option was Interferon, whose mechanism of action is not only complex but not well understood. “Interferon can cause lupus, an autoimmune disease,” Janie points out. Plus, AGCG is so rare that there is not much research or evidence to suggest that either of these treatment options would work.
After careful consideration and an abundance of research, Janie decided that they would try treating Rylie with cannabis-derived cannabidiol, the non-psychoactive compound found in the cannabis plant. “My doctors thought I wouldn’t have teeth or I would be deformed for the rest of my life after I got my surgery … but my mom was looking up things to do, and she saw cannabis. Cannabis popped up a lot [in her research], and she thought, ‘Well, I’m willing to do anything for my daughter.’ So she decided to try it, and it ended up helping my bones regenerate, and all my bones have regenerated.” This is where Rylie’s journey into the world of cannabis as medicine began.
Choosing Medical Cannabis Activism
“Shortly after taking cannabis oil, my pain started going away, my bones started regenerating, my seizures decreased a lot, and the roots of my teeth started growing back!”
Very soon after making the decision to treat Rylie’s AGCG with CBD cannabis oil the family witnessed results. “Shortly after taking cannabis oil, my pain started going away, my bones started regenerating, my seizures decreased a lot, and the roots of my teeth started growing back!” Rylie smiles. “Which made me smile even though my teeth were so loose and crooked! Thank God for braces!” Rylie takes non-psychoactive CBD and THCA either through a pipette or in capsule form four times each day. “I don’t smoke [cannabis]. I don’t get high,” she remarks.
When Rylie learned that the medicine she had been taking was not available to other sick kids she was saddened and disheartened — and then, motivated. “I knew I wanted to become an activist after I found out what my medicine was and why people were against it. I still didn’t understand why people would be against something that helped me so much, and I wanted other kids to be able to have it so they can get better and start feeling better and have a happier life. So, I decided to speak for medical cannabis and educate others about it and kind of get rid of the stigma of it,” Rylie shares.
In January of 2015, the Rylie’s Smile Foundation was formed. The 501c3 non-profit aims to “bring the smiles back to sick children and their families by helping them achieve a better quality of life.” The foundation provides health education, technology devices and advocates for more treatment options for sick children all while supporting the research of less toxic therapies on a global scale. “So my foundation, we advocate for better access, support research of less toxic therapies and we help families financially. We go to different families, we talk about medical cannabis and how it’s good … how it can help their kids,” Rylie shares with the confidence and acumen of a woman twice her age. “We try to let people know [about the] stigma. It isn’t real because it’s a real medicine, it’s not just some drug that people use to get high, you know?”
The non-profit not only promotes medical cannabis education it fundraises as well. “I want it [Rylie’s Smile Foundation] to focus on medical patients because they really need it and it’s hard to get medicine that’s affordable and good quality because a lot of times I used to get medicine that had mold in it and it was still expensive and it would just cause more problems for me,” Rylie says with concern in her voice.
Rylie’s non-profit work led to the establishment of Rylie’s Sunshine in July of 2017. Rylie’s Sunshine works with one cannabis producer to create whole-plant botanical oil that is reliable, safe, natural and clinically tested. The botanical oil blend is an MCT oil that’s non-GMO and tested for both purity and potency. The company has a team of medical experts available for one-on-one consultations for those curious about using variations higher in CBD, THC and THCA as a treatment for serious pediatric illness.
You would think that being the youngest CEO of a cannabis non-profit and the founder of a CBD company dedicated to providing whole-plant medicine to patients in need would quell Rylie’s thirst for activism. But you’d be mistaken. Rylie has also made it her mission to change the laws surrounding medical cannabis in her home state of Delaware.
In June of 2016 after months of hard work, Delaware Senate Bill 90, more commonly known as Rylie’s Law unanimously passed the Delaware House landing on the desk of Governor Jack Markell for approval. The passing of SB 90 made it possible for those under 18 with qualifying conditions to legally use medical cannabis to treat a myriad of conditions including PTSD, intractable epilepsy, Dystonia, muscle spasms and cancer to name a few. Rylie was instrumental in the passing of SB 90 and children and their families in Delaware can now safely and legally choose to use medical cannabis as a treatment option.
“So the first law I made was Rylie’s Law, and it was to allow kids to be able to take medical cannabis. And then my next law was to make it legal to have cannabis on school grounds because at the time I had to walk all the way off of school grounds just to take my medicine,” Rylie points out. “I would be singled out, I would miss things in class, kids would be like, ‘Hey Rylie, why do you always leave school?’ and I knew that there were other kids who had it worse. [These kids] had oxygen tanks or wheelchairs, they wouldn’t be able to go out in thunderstorms or rain, and they wouldn’t be able to take their medicine like I could.” Rylie wanted the playing field to be equal for all kids — thus the inspiration for Rylie’s Law Part II was planted. A seed that couldn’t be stopped.
Rylie and her mom Janie worked hand-in-hand with Delaware Senator Ernie Lopez (R-Lewes) in the passage of Senate Bill 181, giving qualified medical patients the ability to legally take their medical cannabis while on school grounds or on a school bus. While the bill requires the administering of medical cannabis to be done by a parent or legal guardian, it remains a win for cannabis legislation and sets the groundwork for further cannabis legislation in Delaware and beyond. Despite all of Rylie’s successes, Delaware is still facing an uphill battle when it comes to medical marijuana legislation.
“We have a lot of conservative people who have influence here [in Delaware]. Most are powerful medical establishments and doctors. We are working so hard to remove the stigma and validate medical cannabis as a viable option for patients,” Rylie shares. “My goal is to work with these doctors and companies, not against because I want them to treat patients with medical cannabis. I don’t want them to put up walls and think of it as a recreational drug only.”
Every single law that Rylie’s foundation has put forth has been met with resistance. “I try to remind people of the ‘why’ and the reason we need to work together on this, not against each other … because in just a year or two we will be back at Legislative Hall probably working together again to improve the laws more.” Rylie states. “It has been a true test of patience for every patient in our state and my heart goes out to the families. They keep me going.”
DARE to be Vocal
Rylie has been instrumental in exposing the need for medical cannabis for pediatric patients in Delaware, and her vocalism is beginning to break down the negative perceptions that youth have toward medical cannabis on a large scale.
In 2017, Rylie’s Smile Foundation spearheaded a petition to pass severe autism as a Qualifying Condition for Pediatrics. The petition contained 263 pages full of information about autism as a diagnosis, how it affects the quality of life, letters from families, letters from medical professionals and supportive research. Rylie and her supporters believed that pediatric autism should be on the list of qualifying conditions for access to medical cannabis in Delaware.
“There are a lot of people in my family and that I know who have autism. Cannabis helps with autism so much, so we thought it should be legal for them,” Rylie emphasizes. The petition review process was long and arduous as the state wanted to pass it as an “Autism with aggression only” law. Rylie’s Smile Foundation asked for more testimony from parents, convincing the state that autism affects the quality of life of all children on the spectrum not just children showing signs of aggression. This petition was approved, and severe debilitating autism was added as a qualifying condition after much debate in December of 2017.
Rylie has been instrumental in exposing the need for medical cannabis for pediatric patients in Delaware, and her vocalism is beginning to break down the negative perceptions that youth have toward medical cannabis on a large scale. “At first when I was in third grade when we told the public that I was taking cannabis … at first, a lot of parents were trying to keep their kids away from me or saying, ‘She’s a bad influence, stay away from her.’ As time went on, people become more accepting of it and right now, everyone in my school is very supportive, and they all know that medical cannabis is good and they know how much it’s helped me and all that,” Rylie adds.
But Rylie has been active in changing her school’s drug prevention curriculum as well. At 13, Rylie is going through a drug prevention program at school. Many of us remember Nancy Reagan’s “Just Say No” program of the ‘80s and ‘90s – it seems that not much has changed on the drug education front in the last two decades. “Okay so the videos they show in school, they’re all from the ‘90s or late 2000s … they’re not up-to-date, and we have so much research that shows that medical cannabis helps people so much and it’s a real medicine, yet the videos all claim that cannabis causes more problems like [cannabis] causes you to be insane. And they use scare tactics to try to keep people away from it,” Rylie critiques.
Rylie would like to see a curriculum that is more up-to-date – a curriculum that is inclusive of not only recent cannabis research findings and testimonials but one that is more in touch of the way that students her age learn and internalize new knowledge. “We want to promote harm reduction [curriculum]. We want to teach others to not experiment with cannabis or mix cannabis with other substances. We want to educate others and help them learn how to use [medical cannabis] safely,” Rylie remarks.
Currently Rylie, her family and supporters are working diligently on expanding Rylie’s Law. When Rylie’s Law first came to be it had about four qualifying conditions on the list and children could only be approved by certain specialists, which limited the law in many ways. Many children who could greatly benefit from medical cannabis for their diagnosis have yet to be able to attempt treatment with it. SB24 allows doctors to recommend medical cannabis for diagnoses that are not on the current qualification list. Further, the pediatrics sector will no longer be limited to the five specialists currently allowed to provide medical cannabis recommendations. The Maedlers hope that this will improve circumstances for those patients who have rare diseases or serious quality of life issues.
“I’ve seen how involved Rylie gets in the legislation aspect of things. She understands more than most adults and even more then some legislators I believe,” shares Janie Maedler. “She knows how actions can be perceived, she knows what can make a bill go south in the media, she knows how to approach an opposing legislator and turn their vote. The hardest part is that I know she has a time clock in her head and she feels that patients are suffering while bills are being challenged or amended, so that is her biggest stress but part of the process. She has a unique way she works on future legislation and refrains from publicizing much of her efforts until [the job is] done. She is very careful about what she vocalizes to the media before a law is passed, and she does most of her work in person with legislators. She is very old school.”
In addition to her work in Delaware, Rylie has been globetrotting and spreading her vision for the future and testimony of medical cannabis around the world. From CannaTech Sydney to CannaTech Tel Aviv she’s been welcomed by crowds and brought tears to attendees’ eyes. Her perspective as a patient, lobbyist, activist, CEO and well-adjusted teen give her an undeniable edge. When she talks people listen. Cannabis is fortunate to have a dedicated, resilient and passionate medical cannabis proponent on its team.
Rylie has big plans for her future. When she’s not doing typical teen stuff like “hanging out at the beach or pool,” snuggling with her cat or playing piano, she’s planning future interviews in hopes of spreading cannabis’ message at a feverish pace. “I want to interview researchers, possibly celebrities about what they think about cannabis, their experiences and what they know [about cannabis]. I just want to interview people, get to know them, their experiences … everything. I think it would be cool to interview others,” Rylie emphasizes. On that list? Snoop Dogg of course.
Rylie also hopes to see cannabis removed from the list of Schedule I substances and legalized on a federal level. “It’s important for the situation to change federally, because if we change it federally [then] all the states will have to work together to make medical cannabis legal. Right now, we have different government officials from every state wanting to do things in their own way, which takes longer [to get anything done or passed],” Rylie describes.
In coming years, as Rylie continues to hone her skills as a political activist and global cannabis advocate she will undoubtedly make waves and move the pendulum of cannabis stigmatization in the right direction. At 13, she has done more for cannabis legislation and activism than most of us could hope to accomplish in a lifetime. Rylie is a force, and we can’t wait to see where she takes us next.