http://www.internationalchildhoodcancerday.org/About.html for more information!
What is International Childhood Cancer Day? International Childhood Cancer Day is a global collaborative campaign to raise awareness about childhood cancer, and to express support for children and adolescents with cancer, the survivors and their families. The day promotes increased appreciation and deeper understanding of issues and challenges relevant to childhood cancer and impacting on children/adolescents with cancer, the survivors, their families and the society as a whole. It also spotlights the need for more equitable and better access to treatment and care for all children with cancer, everywhere. Who is behind International Childhood Cancer Day? This annual event was created by Childhood Cancer International (CCI), a global network of 183 grassroots and national networks of parent organizations in 93 countries, spanning 5 continents. CCI is the largest childhood cancer patient support and advocy network. International Childhood Cancer Day is based on Childhood Cancer International’s (CCI) core belief that every child with cancer deserves the best possible medical and psychosocial care, regardless of country of origin, race, financial status or social class. It is also anchored on the premise that childhood cancer deaths are avoidable, with timely and accurate diagnosis , availability and access to proper treatment and care as well as affordable, good quality essential medicines. ICCD was first launched in 2002. Since then, the annual ICCD has generated the support of global networks and leading institutions including: SIOP (International Society of Pediatric Oncology, with 1500 plus members), SIOP Europe (European Society of Pediatric Oncologists), UICC (Union for International Cancer Control with 770 member organizations in 155 countries), St. Jude Children’s Research Hospital, and IARC (International Agency for Research on Cancer), among others. This year the coalition has further expanded to include international child focused organizations such as ICPCN (International Childrens Palliative Care Network ) and CLAN (Caring and Living Among Neighbours). Why it is important for you/your organization to show support and solidarity for International Childhood Cancer Day? Children and adolescents are the heart of every community and nation. It is our responsibility to ensure that they are able to live life to the fullest and to reach their full potentials. Sadly, childhood cancer robs our kids of their childhood and youth. It threatens and puts at risk their very survival. A cancer diagnosis shatters every sense of “normal life” for children, adolescents and their families. But even more heart wrenching than the effects of cancer on the families, siblings and parents, are the effects of cancer on the children and adolescents themselves. At the age of supposed innocence, enjoyment and pure joy, kids with cancer are faced with difficult and demanding situations, isolating them for long periods of time, from peers and friends. Most often, the cancer journey is marked by tremendous pain and stress. Thus, we believe that no child or family should go through the cancer journey alone. Today, we encourage you to STAND UP and SPEAK OUT for kids with cancer, the survivors and their families. Our challenge is to ACT NOW, because we all know that for children and adolescents with cancer, today is sometimes all that they have! Alone, we can make a difference. Together, we will create change. Together, we can help make life better for children and adolescents with cancer, the survivors and their families.
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Bill introduced to advance pediatric cancer research, improve quality of life for survivors2/8/2017 courtesy of Register-Herald.com, by Wendy Holdren 2/7/2017 In an effort to help thousands of children who undergo cancer treatment each year, U.S. Sens. Shelley Moore Capito, R-W.Va., and Jack Reed, D-R.I., last week introduced the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act of 2017. The bipartisan legislation aims to advance pediatric cancer research and child-focused cancer treatments, while improving childhood cancer surveillance and providing resources for survivors and those impacted by childhood cancer. Capito and Reed were joined in introducing the bill by Sens. Chris Van Hollen, D-Md., and Johnny Isakson, R-Ga. “We must continue making advancements that can help save the lives of those battling childhood cancers. The Childhood Cancer STAR Act will contribute to new developments in research and treatment, and has the potential to positively impact tens of thousands of lives. I’m proud to reintroduce this very important legislation for patients and families in West Virginia and across the country,” Capito said. Childhood cancer research has progressed in recent years, but cancer is still the leading cause of death by disease past infancy among children in the U.S., according to NIH’s National Cancer Institute (NCI). NCI estimates 10,380 children and adolescents up to 14 years of age nationwide were diagnosed with cancer within the last year and 1,250 will die of the disease. U.S. Reps. Michael McCaul, R-Texas; Jackie Speier, D-Calif.; Mike Kelly, R-Pa.; and G.K. Butterfield, D-N.C., introduced the legislation in the U.S. House of Representatives. A summary of the bill follows: - Expanding 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 would authorize 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. - Improving Childhood Cancer Surveillance: Building upon previous efforts, this bill would authorize grants to state cancer registries to identify and track incidences of child, adolescent and young adult cancer. This funding would 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. - Improving Quality of Life 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 would enhance research on the late effects of childhood cancers, including a study on insurance coverage and payment of care for childhood cancer survivors; 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. -Ensuring Pediatric Expertise at the National Institutes of Health (NIH): The Childhood Cancer STAR Act would require the inclusion of at least one pediatric oncologist on the National Cancer Advisory Board and would improve childhood health reporting requirements to include pediatric cancer. |
AuthorBerni & Murcer, Friends for LifeTM Archives
September 2019
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