What We Do

Some of the services we provide to the childhood cancer community are listed below.

Books

We create, publish, and update books that help families of children with cancer and survivors of childhood cancer. The titles that we are trying to keep in print are:

• Childhood Leukemia: A Guide for Families, Friends, and Caregivers (4th edition)
• Childhood Brain & Spinal Cord Tumors: A Guide for Families, Friends, and Caregivers
• Childhood Cancer: A Parent's Guide to Solid Tumor Cancers (2nd edition)
• Childhood Cancer Survivors: A Practical Guide to Your Future (2nd edition)

Website

We developed and maintain this educational website that shares portions of the books, provides referrals to helpful resources, and links to some of our favorite websites.

Book Donations

In 2007 and 2008, we donated 500 books to the national office of Candlelighters Childhood Cancer Foundation to support their book donation program to needy families. We also recently donated five books to every program on the parent-approved list “Follow-Up Programs for Survivors of Childhood Cancer” located at http://www.acor.org/ped-onc/treatment/surclinics.html

Advocacy

We serve on national committees and participate in seminars and conferences on childhood cancer related topics. Examples are:

• Participate in educational radio programs by nationally recognized groups such as National Public Radio, the Leukemia & Lymphoma Society, and Cancer Care.
• Present keynote speeches at conferences.
• Serve on the National Cancer Institute's pediatric central institutional review board.
• Serve on the patient advocacy committee and ethics committee of the Children's Oncology Group (consortium of 350 institutions that treat children with cancer)

Helping Other Non-profit Organizations

Members of our board of directors also support other organizations that help children with cancer by performing free services such as:

• Attended a meeting at the Lance Armstrong Foundation's (LAF) headquarters to help plan their website for survivors of cancer.
• Presented personal testimony (one of twelve persons selected nationwide) to the President's Cancer Panel.
• Wrote articles on survivorship with Kevin Oeffinger MD for Candlelighter's Childhood Cancer Foundation's quarterly newsletter.
• Provided an external review of the Institute of Medicine's 205-page report entitled "Childhood Cancer Survivorship: Improving Care and Quality of Life."
• Administer and participate in online support groups for families of children with cancer.