The Sarcoma Alliance gives education, guidance and support, and some people want to give back.
“The Alliance has amazing, committed volunteers, but we can always use more and would love to have volunteers in every state,” says board member Alison Olig, at right, who will help revamp the volunteer page on the Alliance’s website to include an interactive application and a more extensive list of needs. “Our goal is to match an individual volunteer's skills and interests with our volunteer needs.”
Needs include: updating website content, hosting or assisting at fundraising events, shooting photos or video, starting a support group, talking to other patients, monitoring the discussion board, and writing grants, she says. “We also encourage interested individuals to propose their own volunteer ideas, as we are always open to new, creative forms of assistance!”
The latest creative idea: Some crafty volunteers have offered to sew tote bags out of sunflower material. The Alliance has made the sunflower a symbol of hope for sarcoma patients. It's looking for other volunteers, as well as sunflower material. The tote bags will include information on sarcoma and resources, such as the Alliance’s Assistance Fund, which helps reimburse patients who seek a second opinion from an expert in sarcoma.
“I think the tote bags will definitely be appreciated by sarcoma patients,” says volunteer Sandy Williams, above, of Huntington Beach, Calif., a survivor of malignant fibrous histiocytoma. She has begun the hunt for materials. “When I was first diagnosed, I was flying blind. I made many mistakes, including having my first surgery done by a general surgeon.” After he saw the tumor, she says, “he realized it was way above his abilities and he sewed me back up.
“Getting information on second opinions is life-changing and life-saving.”
New board member Kellie Flynn of Tustin, Calif., agrees. That’s why she volunteered to help administer the Suzanne Renee Leider Hand-in-Hand Assistance Fund, named after the Alliance's founder.
“This is a cause near and dear to my heart on many levels,” says Flynn, right, who had leiomyosarcoma. “I truly believe that I had a terrific doctor in that he checked his ego at the door and told me that he would not be treating me, but that he would gather the appropriate doctors and seek counsel from those doctors who were knowledgeable in sarcoma.
“Also, it is extremely important to me to support Suzanne's legacy. I am very close with Sharon Leider, Suzie's mother. I believe her vision was revolutionary in establishing the Assistance Fund.”
Flynn has volunteered for sarcoma patients for years, having facilitated a sarcoma support group at the Gilda's Club in Chicago and helping with Ocean of Hope, an Alliance fundraiser that consists of ocean races.
“I chose to participate in the Alliance because I feel that I am one of the lucky ones who survived this rare and aggressive cancer and feel compelled to make a difference in the lives of others. I had sacrificed a lot during my diagnosis and treatment, both with my health and my finances, to make sure that I had the appropriate care I needed for a fighting chance to beat this disease. It was a huge price to pay. I went in to business for myself to repay my medical debt and begin a new life for myself. I am now in a position, both personally and professionally, to give back."
Olig, of San Rafael, Calif., was diagnosed with alveolar rhabdomyosarcoma, a pediatric cancer, at age 13. “I cherish each day as a gift not to be taken for granted. I advocate on behalf of childhood sarcoma patients and raise awareness of the long-term side effects that often plague survivors.”
Board members are all volunteers. Although a national nonprofit, the Alliance has many volunteers in California because it was founded in Marin County and has its largest fundraiser in Los Angeles County.
The program began in 2005 and now has more than a thousand participants in all 50 states and 12 countries. It's open to patients, caregivers and others affected by sarcoma. Because of the rarity of the cancer, participants rarely live in the same city. After two people are matched, they usually communicate by phone or via the Internet.
Sarah of St. Cloud, Fla., and Brenda of Corona, Calif., were matched five years ago. They talk once, twice, sometimes even three times a week by phone, but they’ve never met.
“I got blessed,” says Sarah, at right. “We became fast friends. We both leaned on each other. We’re on this journey together. Hopefully, one day we’ll meet.
"It’s not Peer-to-Peer, it’s Friend-to-Friend.”
Both were diagnosed six years ago with synovial sarcoma. Sarah’s left arm was amputated above the elbow, and Brenda lost her left leg above the knee. Both did chemotherapy.
“Brenda and I are like mirror images. Same age, same sarcoma,” says Sarah, 49.
“We talk all the time about everything -- life in general – and we joke!” says Brenda, at left, and dancing the tango in the video. When a lump arose on her leg, she got a biopsy. Otherwise, “I would not let any one touch me until they knew what it was. I had no clue I had sarcoma, but I had the gut feeling that this would kill me if they screwed up.”
Sarah says she had pain in her elbow for a number of years. One doctor put her on antidepressants. She saw an orthopedic doctor for carpal tunnel. The doctor who finally diagnosed her said “he had never seen another sarcoma in all of his years.”
“I thought I was doomed.” But she saw specialists and remains in remission, as does Brenda. Even now, Sarah says, “Cancer is always in the back of your mind. You’re never really free of it.”
A nurse with synovial sarcoma founded the Alliance in 1999 to provide guidance, education and support to others. Merck is the second-largest healthcare company in the world.