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A Life-Changing Diagnosis Inspired My Passion for Advocacy

September 8, 2020
4 min read
Shamari smiling

Shamari is a 15-year old survivor, serving as a 2020 St. Baldrick’s Ambassador. She’s also a strong advocate for childhood cancer research funding and will be part of the Virtual Day of Action on September 9.  Please join the Speak Up for Kids’ Cancer advocacy action network to join her!

A Passion for Advocacy

I have always been someone who made it a point to fight for what I believe in, even before my cancer diagnosis at age 13. One of the first things I advocated for was changing the dress code at my school and succeeding. I am never afraid to advocate for my beliefs and what I know is right even though it’s not always easy. My biggest role to-date is currently serving as an advocate for childhood cancer research as a St. Baldrick’s Ambassador where I now have the power to make an even bigger difference on a serious issue.

Childhood Cancer Action Days – Lobbying Congress

Every year, the Alliance for Childhood Cancer, a group of patient advocacy groups, healthcare professionals and scientific organizations representing millions of Americans who care deeply about childhood cancer, hosts Childhood Cancer Action Days to bring the childhood cancer community together to advocate for childhood cancer issues before Congress. The St. Baldrick’s Foundation is the co-chair of the Alliance, and Action Days in D.C. is what first sparked my interest in doing more.

D.C. is a city where so much happens for our country, history is made, and it’s where I hope to live one day. I want to study politics at Georgetown. Of course, I hadn’t lobbied Congress before becoming a St. Baldrick’s Ambassador, so that was especially exciting and a little intimidating, too.

Knowing that even as a teenager, I could make a significant impact on childhood cancer research and bring more awareness to this critical health issue motivated me. While people know cancer is scary, most people do not know how serious cancer is and the actual rate it affects people, especially kids like me. Shockingly, more kids are lost to cancer in the U.S. than any other disease—in fact, more than many other childhood diseases combined.

Cancer is a Bipartisan Issue.

Despite all these statistics, I never thought it would be me. In the middle of my basketball season, I felt a sharp pain and soreness in my hip. I played a lot of sports, so I figured I did not stretch right or perhaps I pulled a muscle. After consulting my athletic trainer, I was provided with stretches to help alleviate a strained groin, but the pain persisted. It got so bad that at one point my dad carried me off the court in tears. Something was not quite right, but I never imagined it would be osteosarcoma, a rare type of bone cancer typically affecting people under the age of 25.

Cancer does not care about your skin color, age, gender, or socioeconomic standing. Cancer is a bipartisan issue. This is something that anybody, regardless of who they are, could and should fight for.

At 13 years old, I experienced more than I ever could have imagined. People suffer every day from the effects of cancer and the current treatment options available. A cure would change everything but even an alternative, safer treatment needs to be found to help combat the struggles of battling cancer. Chemotherapy is extremely taxing on patients. I remember always getting so nauseous and all I wanted to do was sleep through it. It could be three days or as many as seven days for treatment. Some of the late treatment effects I still experience are a result of medical trauma anxiety.

Shamari and Family

Shamari and Family.

Socially Active While Socially Distancing

Today, I am a 15-year-old childhood cancer survivor who wants to change the world. I’ve been cancer-free since December 2018. With COVID-19, Action Days was cancelled last spring, but that does not stop the rate of childhood cancer or the need for Congress to do more.

Worldwide, a child is diagnosed with cancer every 2 minutes. We cannot pause our fight for anything.

In place of an in-person Action Days, the Alliance for Childhood Cancer is holding a Virtual Day of Action on September 9, and I want my story to inspire others to advocate for childhood cancer research. From advocating to donating or volunteering – we can all do our part to help eradicate childhood cancer.

Do Your Part To Help Eradicate Childhood Cancer