American Childhood Cancer Organization: history and founding

This page is for families facing childhood cancer who want to know about the American Childhood Cancer Organization (ACCO). It covers where ACCO came from, the programs it runs, and what it can and cannot do.

ACCO's story starts with parents, not doctors. In 1970, about 25 parents met at Children's National Medical Center. Their children had been diagnosed with cancer. Most often it was acute lymphoblastic leukemia. One of those children was Kathleen Rea Monaco. She was diagnosed with leukemia in 1968 at 18 months old.

The parents formed a support group. They called it Candlelighters Foundation. Grace Ann Monaco became an early, visible spokesperson for the group. Other founding families included the McGaughys, the Sullivans, and the Koltnows. Early supporters Al Karr and Arnie Weiss also helped. Doctors helped too, including Dr. Sandy Leiken.

At the start, Candlelighters focused on something simple: parents talking to other parents. Few people outside pediatric oncology understood what families were going through. The group gave them each other.

That grew fast. In 1970 alone, Candlelighters put out its first newsletter. It also created a Childhood Cancer Ombudsman Program, a way for families to get help resolving problems during a child's care. The group later pushed into advocacy for childhood cancer research funding and access to clinical trials.

By 1990, Candlelighters held its first nationwide parent meeting. This connected local groups from across the country. In 1993, the organization published "Educating the Child with Cancer," a resource aimed at helping schools and teachers support kids with cancer.

In 2010, Candlelighters Foundation became the American Childhood Cancer Organization, or ACCO. The name change reflected a broader mission. The group's focus had grown from parent support alone to childhood cancer overall. That means patients, siblings, and survivors, not just the parents who started it.

ACCO also helped found the International Confederation of Childhood Cancer Parent Organizations. This connects similar parent groups working in other countries.

ACCO runs several public campaigns:

• PJammin uses pajamas as a symbol, described by the organization as "the battle uniform for children with cancer." It asks supporters to wear pajamas to raise awareness and funds.
• Go Gold is ACCO's signature gold-ribbon awareness and fundraising campaign. Gold is the color tied to childhood cancer.
• Hero Beads gives children a bead for each procedure, treatment, or milestone they go through. This builds a visual record of their journey.
• Founding Hope lets families set up memorial funds in a child's name.

ACCO also maintains "The First 48" campaign, which shares survivor stories about the earliest hours after a diagnosis. It also offers educational material on clinical trials for families weighing that option.

ACCO says it now reaches more than 100,000 families through a network of roughly 40 affiliates and divisions across the country. It offers 24-hour online support. It connects families to peer groups. It provides plain-language information about childhood cancer, treatment, and what comes after.

Its own materials point out a hard fact: about two-thirds of childhood cancer survivors go on to develop chronic health problems tied to the toxicity of the treatment that saved their lives. That statistic is part of why ACCO's work extends well past the day of diagnosis, into survivorship and long-term follow-up.

ACCO is not a hospital. It does not diagnose or treat childhood cancer. It cannot choose a child's chemotherapy protocol, order scans, or manage side effects. Those decisions stay with a child's own pediatric oncology team.

A support network also cannot promise a cure or guarantee smooth insurance approval. It can, though, connect a family to people who have been through something similar. It can also point to plain information about what questions to ask next. For families newly facing a childhood cancer diagnosis, that combination — peer support plus a place to start — is often the most immediately useful thing ACCO offers.

ACCO's history shows what a small group of parents, meeting because of a shared hardship, can build. They created a network so new families would not have to face childhood cancer alone. That purpose still shapes ACCO's work, even though its programs have grown far beyond that first meeting of 25 parents in 1970.