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Gold Ribbon Hero: Grace

Gold Ribbon Hero: Grace

Meet Grace – a sweet and spirited 9 year old and one of our Ambassadors for Childhood Cancer Awareness Month. Grace is a generous and giving individual with a passion to help others and brighten their days. She is strong and courageous, even when things might not be easy.

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Grace is a typical 9-year-old, she loves gymnastics, softball, riding her bike, reading, painting and swimming. She also loves playing with her friends. This little warrior exudes good vibes and positive energy 24/7. For every birthday, Grace requested that in lieu of gifts, money should be donated to St. Jude Children’s Research Hospital. Little did she know, she might be the recipient of services from them in the future.grace2

Aubrey, Grace’s mom, said “Grace was always the tallest in her class, and then one day she wasn’t. She was drinking a lot of water, so it warranted a closer look. A proactive pediatrician and endocrinologist ordered a brain MRI which resulted in the detection of a mass around Grace’s pituitary gland dangerously close to her optic nerves.”  The initial tumor was detected on April 9, 2018 and over the next few weeks, Grace endured scans at the neurosurgeons office. After discussing things with the doctor at length, Grace decided she wanted to be a doctor. She had more tests, scans and plenty of needles and laid still for each of them. She got through all of the tests by listening to songs on her playlist and smiling as best she could. Grace even comforted her queasy mother and support team.

Grace was diagnosed with Germinoma brain cancer, a germ cell brain tumor, on May 2, 2018. Her aggressive treatment began on May 9, 2018 and she just finished the radiation portion of treatment. As of today, there is no evidence of a tumor and Grace will undergo blood tests, MRIs and spinal taps for the next few months to monitor the success of the chemo.

graceandmomGrace loves to be crafty; she made a sign for the children to sign and date which says “Last Day of Chemo.” Throughout her treatment, she decided to paint pictures to brighten the nurses and the children’s days. When losing her hair became a reality, Grace decided to throw a party and shave her head. Grace’s brother and her best friend joined her in shaving their heads as well.

According to Grace’s mom, “The hardest thing in the process has been missing school. She is one of ‘those kids’ that is passionate about being in school. She video conferences in as much as she can and keeps up on all her projects, even the ones for her future’s gifted program. She rallied a huge team for a fundraiser walk for her hospital and came in second place overall for fundraising. She was the first place for largest team.”

Grace is determined to help people and is currently making a plan of how she will continue helping other kids with cancer. She enjoys tagrace1lking to people about this part of her journey and is focused on helping others. Grace plans on learning more about oncology. She is excited for the future and can’t wait for her hair to start growing back!

*Special thanks to Barbara Zobian and the Candlelighters NYC*

 

American Childhood Cancer Organization Applauds World Health Organization’s New Global Childhood Cancer Initiative

FOR IMMEDIATE RELEASE – September 28, 2018 – Washington, D.C. – The American Childhood Cancer Organization (ACCO), the soleU.S. member of Childhood Cancer International (CCI) provided its overwhelming support today for the World Health Organization’s (WHO) 0announcement of its new global initiative to address the disparity between childhood cancer survival in low-middle versus high-income countries. The announcement came at the United Nations (UN) General Assembly’s side-meeting on childhood cancer which was organized by the Missions of the Republic of Uzbekistan, the Hashemite Kingdom of Jordan, El Salvador, the Republic of Moldova, the Kingdom of Morocco, the Republic of Philippines and the Russian Federation.

Funded through a generous donation from St. Jude Children’s Research Hospital, the WHO Global Initiative for Childhood Cancer partners with national and international *stakeholders including CCI to provide leadership and technical assistance to support governments in building and sustaining high-quality childhood cancer programs.

Each year, more than 300,000 children ages birth to 19 years are diagnosed with cancer around the world. Approximately 8 in 10 of these children live in low and middle-income countries where their survival rate is often near 20%. This is in stark contrast to high-income countries, where cure rates exceed 80% for many common childhood cancers.Screen Shot 2018-09-26 at 3.15.41 PM

How urgent is this global initiative? “Childhood cancer is the number one non-communicable disease (NCD) cause of death in children globally,” said Ruth Hoffman, ACCO’s Chief Executive Officer, and President of Childhood Cancer International. “Childhood cancer has no borders. Why should childhood cancer treatments and cures? Even in the U.S. the majority of children with cancer continue to be treated with old drugs that were developed in the 1950’s, ‘60’s and 70’s. These drugs cost very little yet are too often unavailable to the majority of children with cancer in the world who happen to live in low to middle income countries. With increased access to essential childhood cancer medicines and radiation, children can be cured of their disease regardless of where they live in the world.” Ms. Hoffman will continue to represent the voice of the families of children with cancer as a member of the WHO Global Initiative for Childhood Cancer.

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  • Increase political commitment and capacity of countries to deliver best practices in childhood cancer diagnosis and treatment;
  • Support governments to develop high-quality cancer centers as well as develop standards and tools to guide the planning and implementation of interventions for early diagnosis, treatment and palliative and survivorship
    care inclusive of the needs of childhood cancers;
  • Improve access to affordable essential child cancer medicines and technologies;
  • Support governments to safeguard families of children with cancer from social isolation and financial ruin as a result of cancer care;
  • Prioritize cancer as a child health priority and increase available funding at the national and global levels.

This initiative is founded on the World Health Assembly’s resolution Cancer Prevention and Control through an Integrated Approach (WHA70.12), which urges governments and WHO to accelerate action to achieve the targets specified in the Global Action Plan and 2030 UN Agenda for Sustainable Development to reduce premature mortality from cancer.

Actions to increase childhood cancer survival today represent effective and tangible steps as part of the broader fight against non-communicable diseases – steps that will catalyze global efforts to transform childhood cancer outcomes worldwide and ultimately save many more lives of children, now and for years to come.

*Some Stakeholders include: The International Society of Pediatric Oncology (SIOP), Intenational society of pediatric oncologists, Union for International Cancer Control (UICC), International Atomic Energy Agency (IAEA), International Agency for Research on Cancer (IARC), Sick Kids Hospital of Toronto, Texas Children’s Hospital, World Bank, Pediatric Oncology Rally to Transform Access to Global Essentials (PORTAGE), Friends of Cancer Patients (FOCP), Chai Clinton Health Access Initiative (CCHAI), BIO Ventures for Global Health (BVGH), Pharmaceutical Industry, International Federation of Pharmaceutical Manufacturers & Associations (IFPMA)

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The American Childhood Cancer Organization was founded in Washington, D.C. in 1970 by parents of children and adolescents diagnosed with cancer to advocate for their needs and support research so every child survives and leads a long and healthy life. The U.S. largest grassroots organization at the forefront of the crucial battle against childhood cancer, the ACCO is dedicated to shaping policy, supporting research, raising awareness and providing educational resources and innovative programs to children with cancer, survivors and their families. Since its inception, the ACCO has helped support more than half a million families affected by childhood cancer. ACCO now has 35 local ACCO affiliates known as Founding Hope chapters throughout the United States. www.acco.org.

Childhood Cancer International (CCI) was founded in 1994 and is recognized as the largest patient support organization for childhood cancer in the world. Comprised of 188 member organizations in 98 countries, CCI represents the voice of children and adolescents with cancer, childhood cancer survivors and their families globally. Operating as a non-State Actor in official relations with the World Health Organization (WHO), CCI engages with the WHO as well as international develo
pment organizations, policy-makers, civil society organizations, research and medical professionals to advocate for the rights of children and adolescents with cancer and prioritize childhood cancer as an integral part of the local, national and global child health and development agenda. 
www.childhoodcancerinternational.org

FOR MORE INFORMATION OR TO SET UP AN INTERVIEW: Contact Ruth Hoffman, Chief Executive Officer, American Childhood Cancer Organization and President, Childhood Cancer International. rhoffman@acco.org; 202-262-9949.

Largest Childhood Cancer Icon Ever

Amazon + ACCO 2018

American Childhood Cancer Organization and Amazon Unveil Largest Childhood Cancer Icon Ever

IMG_0153Amazon provides funding for policy initiative to overcome the disparity between adult and childhood cancer research

 

Dear ACCO supporters –

IMG_0151As you know, September is Childhood Cancer Awareness Month (CCAM). Our team has been hard at work the past year preparing for this important month. Today we are reaching out to our supporters so that you are the first to hear some very exciting 2018 CCAM updates. We hope you followed along last year during Childhood Cancer Awareness Month as Amazon + ACCO joined together in a revolutionary awareness campaign to transform the future of how corporate American recognizes childhood cancer as a national child health priority. This year is even bigger and better, literally! Today we are thrilled to announce Amazon + ACCO 2018 as we unveil our biggest awareness icon yet – a massive Amazon Prime airplane emblazoned with a old ribbon and featuring the American Childhood Cancer Organization’s registered taglines “GO GOLD®” and “because kids can’t fight cancer alone”.The plane will take to the skies and deliver packages to customers across the nation, bringing a little bit of gold (and hope) everywhere it goes (www.acco.org/amazongoesgold)!
We are also excited to announce that throughout the month Amazon will also host “Camp Amazon” Gold Edition activities in Amazon robotics fulfillment centers across the United States to engage children diagnosed with cancer who demonstrate an interest in Science, Technology, Engineering, and Math (STEM). The fulfillment center will turn “gold” for the occasion and invite cancer children from local hospitals to see how Amazon robots help deliver smiles to customers around the world.  On behalf of the children participating in Camp Amazon Gold Edition, Amazon will also make donations to the pediatric oncology programs committed to saving their lives.

Until September 2017, no one knew hope could be found in a box. In the weeks and months to follow, we heard from thousands of you impacted by childhood cancer and who were so deeply moved that the world’s largest online retailer would join in the fight against the disease. In September 2018, we are excited to share that millions of Amazon customers will once again receive the special edition box featuring the gold ribbon, the international symbol of childhood cancer. We can’t wait to see your photos after you receive a box, please be sure to share with us on social media!

IMG_0149Additionally, like last year, in September thousands of Amazon fulfillment center employees will dress in their pajamas at work as a part of ACCO signature program PJammin®, recognizing pajamas are the battle uniform for children with cancer who often are forced to spend months and even years at a time fighting for their lives in their PJ’s. Soon we will be reaching back out to you to join our ACCO team and Amazonians as we go PJammin in hopes that the movement will go viral so that children fighting for their lives in their pajamas all across the country – many times isolated by hospital walls and connected only to the outside world by social media – will not feel alone.

Last but not least – ACCO is so proud to share with you first that in 2018 Amazon has chosen to take the next key step towards improved outcomes for children battling cancer by providing financial support of a new policy initiative, Why Not Kids. Using Kentucky as a successful model, Amazon + ACCO will strategically implement Why Not Kids in pilot states across the country to advocate for policies and state-level funding in recognition that children are not simply small adults.

Although it is important to acknowledge significant recent accomplishments including the 21stCentury Cures Act, RACE (Research to Accelerate Cures and Equity) for Children Act, and Childhood Cancer STAR (Survivorship, Treatment, Access, and Research) Act, we know a large disparity still exists between the amount of funding the federal government allocates for adult and childhood cancer research. The reality remains that in the past two decades only 3 new drugs have been approved by the FDA specifically to treat childhood cancer. This compares to more than 185 new drugs approved to treat adult cancers. We think kids deserve more. Involvement of corporate partners is more important than ever to give all children access to more effective treatments with less toxicity.

IMG_0152This disparity became very personal to ACCO Director of Government Relations and External Affairs, Jamie Ennis Bloyd, when her five-year-old son was diagnosed with aggressive stage 4 lymphoma and leukemia during the legislative session in March of 2014.  A state public health lobbyist at the time, Jamie quickly recognized the gap in state-level engagement and funding for childhood cancer. Working with state legislative commission staff, she discovered in the last 3 biennial state budgets over $15 million dollars [1] had been allocated to adult cancer research. Never in the history of the Commonwealth of Kentucky had the legislature invested in broad-based support of pediatric cancer – causing her to wonder aloud, “If state funds have been allocated to adult cancer research – why not kids”? She soon learned that very few, if any, states in the country had specifically invested in childhood cancer research either.

In the 2018 Kentucky legislative session Governor Matt Bevin and the Kentucky General Assembly recognized this urgent need and set a national precedent for state engagement in the fight against childhood cancer by appropriating first time funding of $5 million dollars for collaborative childhood cancer research efforts at the state’s two children’s oncology group hospitals. Already this new funding has resulted in the revelation of a cluster of a 40-county area in Kentucky in which children have an 87% higher incidence of pediatric brain tumors than what would be expected. Pediatric brain tumors are now the leading cause of death for children diagnosed with cancer in America. We want to bring this type of awareness and state level funding for childhood cancer research to all fifty states and we are so thankful for Amazon’s financial support to ACCO to make this happen.

We hope you join with us in sharing a sense of excitement and pride for being a part of our organization and a community of supporters who make this work possible. We couldn’t do it without you. Please stay tuned throughout the month as we post daily about other corporate partnerships, the amazing work of our 33 Founding Hope chapters, our Gold Ribbon Heroes, Go Gold events, Light Up Gold, PJammin® in schools, updates on the state proclamation initiative, and so much more.

Please consider asking friends and family to join follow us on social media and sign up for our mailing list (hyperlink here to webpage to join mailing list) to join us on our quest….because kids can’t fight cancer alone!®

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Ruth Hoffman,

Chief Executive Officer

American Childhood Cancer Organization

 

The American Childhood Cancer Organization was founded in Washington, D.C. in 1970 by parents of children and adolescents diagnosed with cancer to advocate for their needs and support research so every child survives and leads a long and healthy life. Since its inception, the ACCO has helped support more than half a million families affected by childhood cancer. ACCO now has more than 33 local ACCO Founding Hope affiliates throughout the United States. For more information on the partnership with Amazon visit www.acco.org/amazon.To make a donation, please visit www.acco.org/donate.

[1]Information based on 2016 RS HB 303, 2014 RS HB 235, 2012 RS HB 265 and provided by LRC Appropriations and Revenue staff on 7/19/2017