NORTH SCITUATE, RIU.S. Senator Jack Reed (D-RI) this week headed to North Scituate to visit children at the MAE Foundation’s Camp Hope, a one-week, free-of-charge camp for children aged 7-17 with cancer and their siblings offering them an opportunity to enjoy the great outdoors and break up the routine of doctors, hospitals and illness while also providing necessary medical oversight.  Summertime activities at the camp include arts/crafts, canoeing, drawing/painting, field trips, recreational swimming, and team-building initiatives, with a pediatric nurse is on site to administer daily medications and a pediatric oncologist on call at all times.

“Camp Hope is a great idea and a very well-run environment providing children who have cancer with the opportunity to enjoy summer while still ensuring that they have the medical oversight they require,” said Senator Reed.  “Any child who has cancer is one too many, and we are working hard on a bipartisan basis to do all we can to seek cures.  In the meantime, I’m grateful to the MAE Foundation and the team at Camp Hope for providing this experience and making life more comfortable and enjoyable for children with cancer.”

The visit came a month after Senator Reed’s Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act was signed into law, making great strides for pediatric cancer research funding.  Reed’s bipartisan bill, which has been called “the most comprehensive childhood cancer legislation ever introduced into Congress,” will help find new treatments, accelerate research, and improve outcomes for patients and families battling childhood cancer.

The STAR Act will expand funding to research childhood cancers, explore effective treatment options, identify and track childhood-cancer rates, and enhance the quality of life for childhood cancer survivors.  It authorizes up to $30 million annually as well as key research initiatives, such as biorepositories at the National Institutes of Health (NIH) and surveillance at the U.S. Centers for Disease Control and Prevention (CDC), while focusing on some of the least-studied and understood childhood cancers.

Now that has been signed into law, the STAR Act will:

Expand Opportunities for Childhood Cancer Research:  Due to the relatively small population of children with cancer and the geographic distance between these children, researching childhood cancer can be challenging.  As such, the Childhood Cancer STAR Act authorizes the National Cancer Institute (NCI) to expand existing efforts to collect biospecimens for childhood cancer patients enrolled in NCI-sponsored clinical trials to collect and maintain relevant clinical, biological, and demographic information on all children, adolescents, and young adults with cancer.

Improve Childhood Cancer Surveillance:  Building upon previous efforts, this bill authorizes grants to state cancer registries to identify and track incidences of child, adolescent, and young adult cancer.  This funding will be used to identify and train reporters of childhood cancer cases, secure infrastructure to ensure early reporting and capture of child cancer incidences, and support the collection of cases into a national childhood cancer registry.

Help Improve Quality of Life Opportunities for Childhood Cancer Survivors:  Unfortunately, even after beating cancer, as many as two-thirds of survivors suffer from late effects of their disease or treatment, including secondary cancers and organ damage. This legislation will enhance research on the late effects of childhood cancers, improve collaboration among providers so that doctors are better able to care for this population as they age, and establish a new pilot program to begin to explore innovative models of care for childhood cancer survivors.

Ensure Pediatric Expertise at the National Institutes of Health (NIH):  The Childhood Cancer STAR Act will require the inclusion of at least one expert in pediatric oncology on the National Cancer Advisory Board and would improve childhood health reporting requirements to include pediatric cancer.

When it opened in 1986, Camp Hope had 19 campers.  In recent years, more than 60 children have attended.