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Organizational Overview

13thirty Cancer Connect, Inc. is a registered 501 (c) (3) non-profit organization established in 2001 following the death of Melissa Sengbusch who was 19 years old when she died of acute myeloid leukemia. Since its beginning (first called Melissa’s Living Legacy Teen Cancer Foundation), 13thirty has become an internationally known and respected leader in the field of adolescent and young adult (AYA) cancer because of our strong passion, clear vision, and steadfast commitment to a singular focus – teens and young adults with cancer.

Unlike many other cancer support organizations, we concentrate our efforts and resources on a targeted national problem that affects approximately 82,000 young people in the United States each year. As Melissa asked of her mom, we are making a difference. We are making things better for teens and young adults with cancer around the world.

Mission, Vision, Values

The MISSION of 13thirty Cancer Connect, Inc. is to help adolescents and young adults (AYAs) impacted by cancer live their very best lives – today!

  • Our resources help AYAs enhance their coping skills and self-esteem by building satisfying peer connections, learning to self-advocate, and developing effective self-management tools for long-term health.
  • A comprehensive continuum of support (from diagnosis and treatment to healthy survivorship or if necessary, end-of-life) helps AYAs with cancer successfully transition through each stage of their cancer experience.
  • We advocate strongly for improved delivery of medical and educational services through clinician education initiatives and outreach to schools and universities.
  • Together with our strategic partners, we work to increase access to age-appropriate care for all AYA patients and survivors with concentrated focus on improving survivorship (early detection, health maintenance and follow-up care).

Our VISION is that every teen and young adult with cancer “connects” with 13thirty. We strive to incorporate our VALUES into every program and each personal interaction:

  • Tender Loving Care – Compassionately nurture each person’s spirit with warmth and kindness.
  • Respect – Preserve the dignity of all by valuing each person’s inherent worth, unique needs, and capacity for self-determination.
  • Relevance – Provide meaningful resources congruent with our mission and values by staying abreast of medical, social, and technological trends.
  • Honesty – Engender trust by fostering open communication, being fair and truthful in all transactions, and adhering to the highest standards of professional integrity.
  • Safety – Create an environment where people gathering in friendship feel physically protected, emotionally safe, and psychologically unburdened.
  • Stewardship – Continually improve our business practices in order to manage our resources wisely and sustain the organization’s mission.

History

“If you have learned anything from me through all of this, do something with it to make a difference – to make things better.”

These words spoken by a dying 19 year old girl to her mother just days before her death became her last request and her lasting legacy for all teens with cancer, and inspired the establishment of 13thirty Cancer Connect, Inc., initially named Melissa’s Living Legacy Teen Cancer Foundation.

How it All Began

When Lauren Spiker, our Founder, established Melissa’s Living Legacy, very little attention was being paid to AYAs with cancer. She began asking for help in the Rochester, NY, community where Melissa lived and was treated. She was met with great sympathy but little financial support. Early efforts were personally funded with Lauren continuing to work full-time while also getting the fledgling organization off the ground. The first project was developing a website designed specifically for teens with cancer. With no substantial funding source, Lauren sought pro bono services which were offered by a local web development company. From the beginning, the perspective and advice of teens informed all new resource development, and Lauren met with small groups at her home or at borrowed community locations like the Ronald McDonald House .

While the website was still in development, Lauren received a fortuitous phone call one day at home from Dr. Archie Bleyer, the newly appointed chair of the Adolescent and Young Adult Committee of The Children’s Oncology Group (COG), a National Cancer Institute-supported cooperative of approximately 5,000 pediatric cancer researchers from about 250 hospitals across the United States. Dr. Bleyer had heard of the website project from a local doctor, Dr. David Korones, who suggested that Archie give Lauren a call. That unexpected call led to a strategic partnership with COG resulting in shared funding for five years — an instant distribution channel and co-branding of the website. This partnership launched Melissa’s Living Legacy onto the national scene with a small group of others who had begun to recognize the unmet needs of teens and young adults with cancer.

The Teens Living with Cancer (TLC) website went live in September, 2002, and was the first web-based resource for this vulnerable population. For the next few years, Lauren continued to promote the website; adding new content and functionality. By 2004, the TLC website was listed as an important resource on the National Cancer Institute’s website. In 2005, with a grant from the Lance Armstrong Foundation, Lauren worked with a group of five local teens to create Cancer 101 – Straight Talk from Teens, an interactive CD-ROM featuring the personal perspective of teens with cancer on a variety of topics – side effects, peer relationships, dealing with parents, school, etc. Cancer 101 was also linked directly to sections of the TLC website that addressed these issues, and was sent to hundreds of teens across the country free of charge.

In 2006, the Lance Armstrong Foundation (LAF) established the LAF Young Adult Alliance with the goal of heightening awareness of AYA oncology. Melissa’s Living Legacy was invited to be a charter member and the first meeting, with only about 20 others, was held. Together with the National Cancer Institute, an AYA Progress Review Group was formed to identify key issues and suggest initiatives to bridge the gap in services for AYAs. As this illustration shows, the world was not yet paying much attention, but we had a seat at the table with the few enlightened people who were.

Slowly and steadfastly, we continued to find ways to meet the psychosocial needs of teens with cancer. In 2006, The Road I Followed (an end of life resource for teens), was created with memorial funds generously directed from the families of two of our teens – Charlie Cote and Jon Ozimek. This resource was distributed throughout the US and, like Cancer 101, was hailed as significant and ground-breaking.

In 2008, an article on teens and young adults with cancer published in The Wall Street Journal noted us as a resource. By this time, we had begun to raise funds through two special events, Teens Tee-Off Fore Teens High School Golf Tournament, and Journeys; the annual Celebration of Living. In 2009, with a large two year grant from the Greater Rochester Health Foundation, we finally assumed overhead expense and moved into our first home on Elmwood Ave., Rochester, NY, on the Al Sigl Community of Agencies campus. We were also able, for the first time, to hire staff — and the Teens Living with Cancer (TLC) program grew. The rest, as the saying goes, is history!