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“Reason this person is a Gold Ribbon Hero: Emily was diagnosed with Ewings Sarcoma in 2010. She missed half of 7th grade and all of 8th grade, but was able to return for 4 years of high school and graduate with a 3.867. She is looking very forward to starting her college career at The Ohio State University in the fall with a Bio Chem major and hopes to one day be a research doctor in oncology. She is funny, feisty, and enjoys each day and new experience she is given. She says that she is thankful for cancer,..that “cancer” doesn’t define her, but the journey through it did. She has relied on God for her strength and is a daily inspiration to me.” – Mary D.

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How will you #StepUp for Action Days in 2015?

A coordinated community effort is underway to storm Congress on foot and online. Childhood cancer organizations throughout the country are joining together to send Congress the message of #StepUp: Make Childhood Cancer a National Child Health Priority.

We have created #StepUp Selfie Signs for you to print and hold in your Selfie, or you can just write #StepUp: Make Childhood Cancer a National Child Health Priority on a piece of paper and hold it up.  To use a sign, click on a link below and print.  Please be sure to send in your selfie on our Facebook Page or by email to cperry@acco.org.  Thank you and we can’t wait to see how you will #StepUp!

 

#StepUp Sign on Gold Background (to print on white paper)
#StepUp Sign on White Background (to print on gold paper)

 

History will be made next week when approximately 300 advocates come to Washington, D.C. for this year’s annual Childhood Cancer Action Days on June 15-16, hosted by the Alliance for Childhood Cancer. In the days leading up to-and continuing through-next week’s big event we need your help to make sure our voices are heard loud and clear by members of Congress.

StepUp 2015

There are many ways for you to help over the next 7 days of this community campaign:

  • Send in your #StepUp Selfies for us to share and gain national attention. You can share them on Facebook or email them to cperry@acco.org.
  • Take action online! Add the #StepUp hashtag to any of your posts so we can follow along.
  • Visit the #StepUp image bank to find images and messages to share.
  • Change your Facebook and Twitter profile photos to the #StepUplogo found in the image bank or below.
  • Help us go viral! Share #StepUp posts with your friends and ask them to share with their friends!
  • Please participate in the Faces of Childhood Cancer project. For details please Click Here.
  • Starting Monday morning when advocates are in town, tweet your members of Congress using the Twitter-based action platform SoundOff.

Please follow our Facebook and Twitter pages for new posts to share with your friends and family about why we #StepUp for children with cancer.

ACCO is proud to be a leader in this joint effort of the Alliance for Childhood Cancer. In the coming week, we’ll take one step in a long journey toward making childhood cancer a National Child Health Priority.

Please join us as we #StepUp to make our united voices heard on behalf of children with cancer!

For more information about the American Childhood Cancer Organization call 855.858.2226 or visit:

ACCO Mourns the Death of Dr. Robert Arceci, Childhood Cancer Warrior

It is with the deepest sadness, grief, and disbelief that the American Childhood Cancer Organization learned on Monday of the unexpected passing of one of childhood cancer’s greatest, most valued warriors: Dr. Robert Arceci, Director of the Children’s Center for Cancer and Blood Hematology and Oncology at Phoenix Children’s Hospital in Arizona. Dr. Arceci was well-known to both the medical community and the close-knit childhood cancer community for his passionate and wholehearted dedication to the fight against childhood cancer in all its forms. As Co-Director of PCH’s Institute of Molecular Medicine, Dr. Arceci was in the midst of conducting ground-breaking research into new and innovative treatment options for childhood cancer with the ultimate goal of developing personalized treatment options. In his own words, he hoped this research would one day, “improve outcomes…and acquire that dream of really getting rid of this darn disease.”

Dr Bob Arceci
Yet for many, many families who have faced or who are facing the difficult journey through childhood cancer, Dr. Arceci will be missed primarily for his devotion to the children themselves. Despite his dedication to research and teaching, he remained intimately involved in the treatments of children battling childhood cancer, and always made himself available for consultations and second opinions to families across the country. In the words of Ruth Hoffman, ACCO’s Executive Director, “Dr. Arceci…was always available to give his time and expertise to families no matter where he was or how busy he was. He provided second opinions to so many ACCO families over the years, giving hope when it seemed there was none.” And ultimately, he himself noted that he personally felt the loss of every single child he treated, but could not save.

Dr. Arceci’s current research at the Institute of Molecular Medicine is focused on developing new and innovative therapeutic targets and immunotherapies designed to improve treatment outcomes while reducing the negative, long-term side effects that are the all-too-common result of today’s available treatments. His research teams at PCH include multidisciplinary investigators focused on developing scientifically robust, molecularly-based, and ultimately individualized, treatment options for leukemia and other childhood cancers. In addition to his role at PCH, Dr. Arceci also served as a Professor of Pediatrics at the University of Arizona, College of Medicine. Before coming to Phoenix, Dr. Arceci was Director and King Fahd Professor of Pediatric Oncology and Professor of Oncology and Pediatrics at the Johns Hopkins University School of Medicine, and prior to that was Director of Pediatric Hematology/Oncology at Children’s Hospital Medical Center in Cincinnati. He received his MD from the University of Rochester, and completed his residencies and fellowships in pediatric hematology/ oncology at The Children’s Hospital, Boston and Harvard Medical School.

The ACCO would like to express its sincere condolences to Dr. Arceci’s family, friends, and colleagues in this difficult time, as well as to the entire childhood cancer community while it mourns this passing of this great man and childhood cancer warrior. In the words of Ms. Hoffman, “He will be terribly missed!”

 

Help Us Celebrate International Childhood Cancer Survivor Week!

Please send in your stories, wishes, dreams and photos for you or your child that has survived Childhood Cancer.  Please use the comments below, send to us via email at cperry@acco.org or by using our Facebook Page‘s timeline or private message by Clicking Here. You can also visit the Facebook Page set up specifically for Survivors at www.facebook.com/ChildhoodCancerSurvivorJourneys and share you story there.

BRIEFER ON CHILDHOOD CANCER SURVIVORS

COMMON MYTHS AND MISCONCEPTIONS ABOUT CHILDHOOD CANCER SURVIVORS

NaomiLetter from Childhood Cancer International:

“Dear Members, Colleagues and Friends,

At the heart of what we all are committed to doing, is ensuring that children with cancer everywhere, get the best treatment and care they deserve and thus improve their chance for a cure.

Over the years, in a number of countries, both in developed and middle income countries, childhood cancer survivorship has increased. We have a growing number of survivors who are living testimonies that childhood cancer is curable.

Thus, while we continue to advocate for initiatives that will lessen the inequities in survival rates between developed and developing countries, this June, we pause to focus on our childhood cancer survivors.

This June, in solidarity with Childhood Cancer International Survivors Network, UICC and SIOP members, we celebrate the life of our survivors. We honor their courageous journeys and recognize the challenges they continue to face.

Let us STAND TOGETHER with our childhood cancer survivors.

TOGETHER, WE ARE STRONGER.

Together, we will help build better futures for our survivors

Sincerely – Childhood Cancer International”

 

For more information about American Childhood Cancer Organization (ACCO) Click Here

“Reason this person is a Gold Ribbon Hero: The Bloomsburg University football team has been very supportive of  childhood cancer fighter Gage Campbell. They have truly made him feel like a member of the team. He runs out on the field with them before games and and stays on the side lines the whole game. Players also support Gage outside of football actives running a 5K in his honor and visiting him in the hospital. We are so thankful for this wonderful group of individuals.” – Megan C

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“Reason this person is a Gold Ribbon Hero: Kingsley has stayed really tough the last 6 years while he lived in excruciating pain. He always has a smile on his face and knows how to put smiles on the faces of everyone around him. And although he has missed a lot of school, he works extra hard to keep up and is doing really well at it.” – Kira E.

 

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“Reason this person is a Gold Ribbon Hero: I have known Brian since 1993 when I first began volunteering at Camp Ronald McDonald for Good Times, a local oncology camp for kids with cancer & their families.  Brian has been the camp director at CGT for over 20-25 years and besides leading such a tremendously helpful & supportive camp, he has done it with the most soothing, loving, supportive compassion I have ever encountered (& I’m a Social Worker so I’ve encountered LOTS of remarkable heroes, but none as remarkable as Brian).  Countless kids with cancer in their bodies &/or lives (& their parents) have found safety, comfort, security and loving support from Brian, and as a cancer survivor myself, I know full-well how incredibly helpful & beneficial such an oasis of positivity can be.  Brian may not have cured anyone’s cancer, or administered any drugs or radiation, but I can honestly say, without hyperbole, that Brian has done as much if not more to help patients & their families survive the nightmarish chaos of cancer than any non-medical provider can possibly provide.  And he’s done it painfully underpaid (non-profit work is like that, cancer-related or not), probably earning the far less than minimum wage if his salary were to be broken down hourly (during the summer when camp is at its peak, although there are also Spring, Fall, & Winter camps too), Brian’s day begins around 5am and he does not slow down until after midnight.  And he’s done this every year for the last 25 years or so, from the end of May through the beginning of September.  For these reasons and more, Brian Crater is one of my biggest heroes, role models, & inspirations, and I strongly encourage ACCO to recognize this amazing man.” – Spencer P.

brian-crater

ACCO Joins International Advocacy Partners at the 68th WHA Side Event on Childhood Cancer

The American Childhood Cancer Organization (ACCO) is proud of its role as a leader in national, grassroots advocacy for children facing cancer and their families, giving cancer’s youngest fighters a national, as well as a local, voice. The fight against childhood cancer does not stop at our borders, however. The ACCO is equally proud of our active role in the international fight against childhood cancer and our leadership in the international effort to give all children across the globe the chance to live in a childhood cancer-free world. As part of this growing international movement to bring greater visibility to and awareness of childhood cancer as a major health threat facing children around the world today, the ACCO is pleased to be the U.S. Advocacy Voice at the 68th World Health Assembly (WHA) Side Event on Childhood Cancer, and is especially honored to act as this year’s host of the Geneva Reception and Dinner for critical international childhood cancer leaders and representatives from the WHO.

Dr. Chestnov WHA side meeting on Childhood Cancer

Together with international advocacy partners such as The International Society of Pediatric Oncology (SIOP), Childhood Cancer International (CCI), and Her Royal Highness Princess Dina Mired of Jordan (herself the parent of a childhood cancer survivor), the ACCO joins in the world-wide effort to use the platform offered by the World Health Assembly to bring ever-greater awareness of the global prevalence of this disease and the disturbing inequality of survival rates; the continued reliance on toxic drug protocols developed decades ago and the significant health problems they cause for survivors; and the discrepancy in the availability of affordable, effective treatment options for children in middle- and low-income countries. Our goal is to highlight this rising health crisis facing children today, to bring childhood cancer out of the shadows, out of the “Side Event” and into the Main Event.

Every three minutes, a child around the world is diagnosed with some form of childhood cancer, making childhood cancer the most prevalent non-communicable disease in the world! While alarming on its own, this simple truth hides several—even more alarming—facts about global childhood cancer:

  • The incidences of childhood cancer are increasing across the globe. While scientists and health officials are uncertain as to why, it is clear that children will continue to be devastated by this disease in ever greater numbers unless action is taken to stop this disease today.
  • Poor access to health care makes childhood cancer a death sentence in many low- and middle-income countries. While five-year survival rates can be close to 80%, even 90%, in high income countries, depending on the cancer type, survival rates for those same types of childhood cancers are often as low as 10% in low- and middle-income countries, due to the lack of affordable and accessible health care.
  • Development of effective, targeted therapies specific to childhood cancer lags far behind treatments for adult cancers and other health problems. In the United States, for instance, the FDA has approved only two new childhood cancer-specific drugs since 1990 (compared to 109 new drugs to fight adult cancers). Children facing cancer continue to be treated with outdated, toxic drug protocols developed in the 1950s, 1960s and 1970s for adult cancers, despite the recognition that childhood cancers are biologically distinct from adult cancers.
  • Two-thirds of childhood cancer survivors suffer long-term late effects from their cancer treatments. These late effects can range from cognitive deficits, endocrine dysfunction, heart and lung disease, loss of hearing and vision, infertility, and secondary cancers. Even when not coupled with poor access to effective health care, these long-term health effects are severe and life-threatening for one-third of survivors, and undermine quality of life for all

Working closely with its international partners, the ACCO will play a vital role in bringing this critical health problem to the forefront of the international dialogue on health problems facing the world’s children today. By bringing together policy and opinion leaders from various countries, key stakeholders, and representatives of developmental and civil society organizations, this Side Event will seek to

  • Create a collaborative, multi-stakeholder Global Platform and Program for coordinated action in the fight against childhood cancer;
  • Call on the 68th World Health Assembly to address the rights and needs of children with cancer and childhood cancer survivors, as required by the UN Convention on the Rights of the Child; and
  • Share progress on the implementation of best practices contributing to the improvement of access to critical care and treatments and recommend realistic solutions to overcoming current barriers to affordable treatment in low- and middle-income countries.

Most importantly, however, this event will encourage the WHA, WHO, and other international development organizations to take the lead in the fight against childhood cancer by pursuing coordinated global action focused on creating a world in which no child has to face childhood cancer or its long-term effects.

For more information on the international fight against childhood cancer, and the critical role of this event in raising global awareness about childhood cancer and the threat it presents to our children, we encourage you to visit the additional links below:

Video prepared by Mojo Lab for the ACCO to present at the event – Click Here

Concept paper prepared by Ruth Hoffman, Director of ACCO and Vice Chair of Childhood Cancer International – Click Here

Speaker Briefing Note and Agenda – Click here

Video Presentation by Her Royal Highness Princess Dina Mired of Jordan – Click Here

Dr. Greg Aune’s Talk – Click Here

“Reason this person is a Gold Ribbon Hero: Gabby is my 22 months old beautiful daughter who got diagnose with a brain tumor (Medulloblastoma)on  August 2014.
Gabby had 6 sessions of very strong Chemo with 3 stem cells transplant and lots of transfusion.  Today she gets to go home from a long stayed at Children’s hospital of Philadelphia, with a big smile, happy, strong and hopefully cancer free (awaiting MRI and tests).
Gabby is the strongest little princess, she is a true hero and I am very proud and lucky to be her mother.” – Paola P

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ACCO