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Small non-profit partners with Roswell Park

Rochester Business Journal
November 23, 2012

Melissa's Living Legacy Teen Cancer Foundation is a small non-profit with an increasingly national stature, one that has it entering a partnership with a major cancer network in Buffalo and discussions to spread its programs to major hospitals across the country.
The organization, which works to fill the unmet needs of teenagers being treated for cancer, developed a website and program, Teens Living with Cancer, that is being replicated at Roswell Park Cancer Institute in Buffalo.
"We've been working hard to build a model that is now very replicable," said Lauren Spiker, founder and president of Melissa's Living Legacy. "We've had success with the TLC program here in Rochester and we had been putting things in place to move it to Buffalo, and now that's paying off."
Roswell Park officials said they are excited to bring the proven program to teens and families in Buffalo, and they noted that treatment for this segment of the population has traditionally been difficult.
"There's a proven need for these kinds of resources that support the teenagers, who sometimes get lost between pediatrics and young adult treatments," said Cindy Eller, vice president of development and executive director of the Roswell Park Alliance Foundation. "They have their own challenges of being in high school and facing cancer, and we want to help them with the personal challenges that come with a cancer diagnosis."
Roswell Park hopes to have the program up and running by early 2013, Eller said.
The non-profit is looking for further expansion as well, Spiker said. She is working on expanding a complementary program aimed at promoting health and fitness to both the East and West coasts.
The program, TLC Fit, has made inroads in Washington, D.C., and is being discussed with Oakland Children's Hospital in California.
"We're ready to expand it more," Spiker said. "It's an exciting time for us and these programs."
Melissa's Living Legacy was founded by Spiker, mother of Melissa Marie Sengbusch. Melissa was 19 years old when she died of acute myeloid leukemia on June 22, 2000. Before her death, Melissa asked her mother to take what she had learned from her daughter's cancer experience and use it to help other teens living with cancer.
"Everything we've been doing since her death has been driven by that vision she had and the request to make a difference for teens," Spiker said.
The organization was formed to help provide resources to teens with cancer, seek opportunities to improve delivery of services to teens and young adults with cancer and to advocate for teens with cancer and heighten awareness of the struggle they face.
While some hospitals have started to develop programs for this underserved population, Melissa's Living Legacy remains the only community-based organization providing support for teenagers throughout all stages of their cancer treatment, Spiker said. The organization works not only with teens in treatment and through remission, but also with those who had cancer as young children.
"We're finding that the rate of secondary cancer for those who had cancer as young children is very high," Spiker said. "Also, the treatment they go through can have effects on their health and development as they get older."
The program also works with others affected by a teenage cancer diagnosis.
"We have a strong outreach with schools as they support the kids who are re-entering, and support for friends who have a hard time coping and trying to reconcile what's happened," Spiker said.
The Teens Living with Cancer program has been a success largely because of the lack of attention paid to adolescent cancer patients from the medical community, Spiker said.
"To understand how all this came to be is understanding what's happening in the world," she said. "When Melissa was sick, no one was paying attention to adolescents with cancer. We brought the conversation to the table of needs of teens with cancer, and now that the landscape is changing we're able to focus on that and get some traction."
The difficulty comes because teens do not fit well into the traditional cancer treatment programs, Spiker said. Their needs are not adequately met in either pediatric or adult cancer health care settings, so Teens Living with Cancer helps to fill that gap and meet the needs that arise beyond medical interventions.
"For teens that are in a rough spot in their lives, what makes it more challenging and difficult is not just the medical side but the social side," said Leah Shearer, coordinator of the Teens Living with Cancer program. "There's a loss of friends and social connections, not because they don't want to be the teen's friend anymore but because of that time when they're not in school."
Teens Living with Cancer gives them the social connections that are often denied during cancer treatment, Shearer said. The program schedules weekly activities to connect participants to other teens facing cancer, with items such as movie nights and guests from the community. For one activity, the organization brought in members of the Rochester Amerks to play Kan Jam-a flying disc game-with the teens.
"Just bringing them together and providing them the opportunity to connect and share with each other, it gives teens a great sense of confidence and empowerment," Shearer said.
The expansion of the Teens Living with Cancer program has allowed Melissa's Living Legacy to grow as well. What started as a one-person operation run by Spiker is hiring its third employee, one who will operate the Buffalo chapter of the program.
For 10 years the organization has been building its brand and increasing connections with donors and corporate sponsors, Spiker said. With the foundation for expansion now in place, she hopes that the organization's programs can continue to spread nationwide.
To be able to do so, Melissa's Living Legacy is seeking new corporate sponsorships that will help it expand beyond its roughly $150,000 annual budget, Spiker said.
The partnership with Roswell will be key to expansion efforts, she added.
"We're forging that new relationship in Buffalo, and being partnered with a major cancer center we hope will provide not only the programmatic support but also help operationally as we look to build similar relationships with other cancer centers," Spiker said. "Our goal is to roll it out to Buffalo and keep building evidence and creating systems that will allow us to take it to other major communities."

11/23/12 (c) 2012 Rochester Business Journal. To obtain permission to reprint this article, call 585-546-8303 or email

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