By Fred Scarf, 17, Birmingham HS (Van Nuys)
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Fred with a T-shirt and donation box that he made.

Photos by Alexandra Scarf, 17, Birmingham HS

I was the first speaker at my best friend’s funeral. When I walked to the podium and saw the people in the crowd filled with so much sadness, I knew that I had to do something to help prevent others from suffering the way she and her loved ones did.

I met Shiri Gumbiner in study hall my freshman year. We soon became best friends and, though she was in a wheelchair and had been diagnosed with osteosarcoma, a rare form of bone cancer, there was nothing that we didn’t do together. We were troublemakers at Universal Studios, we covered each other’s eyes during scary movies, we were always dreaming about the future.

Later that spring, doctors found 12 tumors in Shiri’s lungs. Her weight continued to drop despite aggressive treatments. By August, the doctors said she had two weeks to live. It was horrifying to know it was only a matter of time before she passed away. I was outraged. It wasn’t fair. It wasn’t right for someone so young to have her life taken away. Was there really nothing I could do?

When she died the following week, her death was unreal to me. I couldn’t accept that I would never see her again. I felt heartbroken and empty, like I was dead, too. I couldn’t stop thinking that people would forget her in a year. I didn’t know how to keep alive the memory of the girl who would always sing along to songs on the radio, which made me laugh and join in. Sometimes I recorded her singing, but she always made me delete it.

I got an idea of what I could do when I was at Barnes & Noble in Encino. I saw a book titled “How to Form a Nonprofit Corporation.” I immediately grabbed the book and flipped through it but I was too excited to even read a page.

Starting a nonprofit seemed impossible, yet the perfect way to honor Shiri. Driving home from the bookstore, I thought of the impact a nonprofit could make. I could raise money to help kids who are battling osteosarcoma. I could help people cope with their struggles with osteosarcoma. I went back the next day and bought the book.

I had no idea if I could do it. I was 15 and was planning to cure cancer. Even to me, it sounded kind of outrageous. I told a few of my friends I was starting a foundation, but they didn’t really understand and would respond, “What … huh?” So I decided to keep my efforts to myself. My parents supported the idea but didn’t believe me at first because I always have big ideas and dreams. Still, they offered to help me.

I started the foundation to find a cure for osteosarcoma, which is a rare form of bone cancer that affects less than a thousand young adults every year. Osteosarcoma has even been nicknamed the “orphan disease” because it is so rare and receives little attention. In 2007 the federal government cut funding for cancer research by almost 10 percent. These cuts affect second- and third-stage clinical trials (the testing of drugs and other treatments), which now rely heavily on cancer-related foundations like mine. What makes the foundation’s fight so challenging is that there aren’t many organizations battling this type of cancer and there isn’t much awareness about this disease. That’s why our objective is to raise awareness and money to donate to promising research to treat osteosarcoma.

I had so much to learn

Starting a foundation was challenging. Very challenging. I bought a few how-to books and had to learn about the different types of nonprofits, the steps to starting one and how to run a nonprofit. If I read something I didn’t understand, I wouldn’t move on until I figured out what I was reading. I would re-read and re-read and look up things in a different book. Sometimes I would even e-mail questions to family friends.

I had to fill out many forms to establish the nonprofit. When I got the paperwork it weighed more than me! I spent almost my whole sophomore year filling out the paperwork. Every day I would do my homework and save a few hours to fill out paperwork and make sure I was doing everything right. I had to form a board of directors, the people who are legally responsible for oversight and administration of the foundation. I also wanted a less formal adult advisory board because I know donating to a teenager’s foundation may be a little unsettling. As I spoke with family friends and adults who have been in my life, I discovered that many people I’d met had been affected by cancer in some way. When I asked if they would like to be involved, they would ecstatically say, “Of course!”

When I got a letter telling me that the paperwork had been approved, I felt excited, happy and motivated. All those nights of hard work made receiving that letter gratifying. I was ready for the next step.

I started a MySpace page and a website ( I update the website every day. Interacting with people and talking about Shiri is work that I really enjoy.

I have responsibilities as executive director. In addition to doing homework, a typical weekend includes replying to an e-mail from a person from another country whose relative was diagnosed with osteosarcoma, applying for a grant (money given to nonprofits to help their causes), and discussing new ideas with my board of directors. It can become pretty stressful when I have foundation responsibilities, homework and extracurriculars, but I really love what I do. I have been affected by this cancer in such a way that I started this foundation to change lives and ultimately save lives. So staying up a few extra hours every night is something I really don’t mind.

Many people asked to help raise money

Fred does interviews like this one on a teen talk show to raise awareness about cancer.

I’ve learned the best way to get the word out about the foundation is through the media. I write press releases and e-mail newspapers and radio and television stations. I’ve even e-mailed Oprah. (I’m still waiting for a reply.) I’ve been interviewed by KABC Channel 7, the Los Angeles Daily News and radio station KNX 1070. It’s pretty neat to see people’s reactions. A lot of people e-mail, call, write letters and sometimes send donations. The most touching reaction I received was from a man who was diagnosed with osteosarcoma. He thanked me for what I was doing and offered to help.

After learning about us through the media, students have contacted me to help raise money. I’ll never forget Rachel from University High School. She asked if we could give her Key Club donation boxes. Even though we didn’t have any donation boxes, I said sure and asked how many she wanted. “How about a hundred?”

That weekend I went with my mom on an official business trip to get donation boxes. We found small wooden boxes at Michaels. We went to every Michaels in the city to get 120 boxes. We also got bright pink spray paint so people could see our donation boxes. I spent that whole weekend spray-painting them in the street. After an hour of painting, most of my body was pink.

I wanted to give people who knew about the Shiri Foundation the opportunity to keep the story of Shiri close to them. So I designed T-shirts that say “I’m fighting bone cancer by wearing this shirt.” All the money goes toward the Shiri Foundation. People throughout the country have purchased shirts online. We have raised about $9,000 through our shirts.

Schools and churches help us raise money and awareness by selling T-shirts and organizing bake sales. Also, school plays donate some of their revenue to the Shiri Foundation. A couple in a small town in Louisiana even started a chapter to raise money. I am touched that so many people from so many places are so supportive.

One of the biggest challenges I’ve faced is fundraising because it is so competitive; there are so many nonprofits trying to raise money for their causes. I don’t want to give small amounts of money to hospitals; rather, the Shiri Foundation plans to raise $183,400 by 2010 for research. I began exploring research opportunities by connecting with people in the osteosarcoma community as well as hospitals and other nonprofit organizations. In the next few years I plan to establish a partnership with a hospital, add an oncologist (a doctor who specializes in cancer) to the advisory board who will help us review current osteosarcoma research, and fund research to find a cure.

Through individual donations, shirts, grants and awards, the Shiri Foundation has raised more than $20,000 to date. I’m so proud of this number, but am more determined to meet our goal of $60,000 this year. This year I’m launching the 2008 Key to a Cure Campaign. The foundation will sell royal blue, decorative keys that will be sold at boutiques and retail stores. Now that the Shiri Foundation is tax-deductible, I’m also looking for corporations to support us.

We threw a prom for sick teens

Teens dance at a prom Fred's foundation held for teens with life-threatening illnesses.

A meaningful project for the Shiri Foundation in 2007 was organizing a prom for teens with life-threatening illnesses. Shiri and I had planned to go to prom together. I realized that there will always be teens like Shiri who will not be able to go to their prom. The purpose of our prom was to give patients the opportunity to go to prom, a night that everyone looks forward to and remembers.

I looked for a venue that was close to the hospitals from which the patients were coming. I also wanted a hotel where the prom’s theme, “A Night in Hollywood,” would come alive. The Renaissance Hollywood Hotel, in the center of Hollywood, fit the bill because it is modern, stylish and glamorous. I worked with a prom company called Wow! Special Events, which found vendors, caterers and photographers. I worked with organizations including the Make-a-Wish Foundation and Ronald McDonald House to spread the word to more patients.

I shivered with excitement when I saw the first patient walk up the red carpet under the shimmering archway of gold, black and silver balloons. She had a look of wonder as she took in the gorgeous room with the Oscar-shaped balloons, lighting and stars everywhere.

I loved seeing all the teens entering shyly, then sitting and laughing and talking. As the night wore on, I’ll never forget seeing the well-dressed teen volunteers on the dance floor with the patients, teaching them new moves and asking them to dance. We had about 16 patients and 18 volunteers and plan to double those numbers for our prom this May. Some of the patients even took off their shoes and high heels. Everyone was laughing and dancing together, and then everyone on the dance floor yelled, “Come on Fred! Join us!” I had a blast dancing with everyone. Toward the end they were exchanging MySpace addresses and phone numbers. It was the kind of prom Shiri would have loved.

Though the Shiri Foundation is an important part of my life, I never really talk about it with my friends. I don’t want anyone to feel that he or she hasn’t accomplished a lot or that I am smug. I want to do great things, but I don’t want to set myself on a pedestal. I value my goals and dreams, but I also value connecting with people and trying new things.

Since starting the Shiri Foundation, I have tapped into every talent and skill that I possess and have developed new skills. I’ve taken the painful feelings from Shiri’s death and turned them into something beautiful. I want to continue to bring people together to find a cure for osteosarcoma, so no child, parent, or loved one will have to endure the horror of this type of cancer again.

While I continue to honor Shiri, I miss her every day. When I hear a new song on the radio or watch a new TV show, I wonder what she would think of it. Though I will never know what she would say about my efforts with the Shiri Foundation, I think Shiri would say, “Good job, Fred.”

To learn more about the Shiri Foundation and to find out how you can help, go to

Other stories by this writer …

An honest grade. Cheating is tempting when you see everyone else doing it, but Fred, 17, has chosen not to. (May – June 2007)

I’ll never forget, Shiri. Fred’s friend died of a rare form of bone cancer, but he remembers he best as a charming, fun "Tweety Bird" with a mischievous side. (September 2006)