Gold Ribbon Hero Kelly K

“Reason this person is a Gold Ribbon Hero: Ms. Kelly has been our son’s oncology nurse practitioner since the day he was air lifted to Comers Childrens Hospital with an inoperable brain tumor. Kelly called often to check in Daniel during his treatment and thru his brain surgeries. Kelly knew exactly how to reassure Daniel when we couldn’t. She spent quite a bit of time with us explains to us procedures, side effects and mire. She helped us find the words to tell our son he had cancer. She was and continues to be a source of strength and courage for our family. Kelly has a fun, loving attitude that helps her relate to children. We are so blessed to be on this journey with Kelly Krammer.” – Karen A

Children Diagnosed With Cancer: Dealing with Diagnosis

Dealing with a Cancer Diagnosis

In the briefest space of time, in the time it takes to say just four little words, the normal, hectic, everyday life of a family can so easily be turned upside down. Hearing those four words that every parent dreads–“Your child has cancer”–is a life-altering experience, and indeed not just for parents, but for siblings, relatives, and even friends. The normal daily routine of the family changes overnight as families cope with the diagnosis, educate themselves on the best treatment options, comfort and care for their sick, scared child while still working, providing for their family, and trying to maintain a semblance of normalcy for siblings.

Handling all of the dramatic changes that a cancer diagnosis requires needs support. Most of this support comes from family members and friends who can supply meals, care for other siblings, transportation, and emotional support. At the ACCO, we are dedicated to offering support as well. We understand just how traumatic a diagnosis of childhood cancer is, and our resources are geared towards helping families navigate this difficult time armed with the information they need to make the right choices for their child and with tools to give their children comfort and succor as they face treatment.

Detailed information from hospitals

The biggest challenge facing parents of a childhood cancer warrior is often getting the right information in a timely fashion, so they can make informed choices about treatment. The first avenue of information is usually the oncologists and physicians, who can provide detailed information about the cancer diagnosis as well as the appropriate treatment options. They will help parents navigate the often-overwhelming amount of information on the cancer itself, the different treatment protocols available today, and short-term and long-term effects of each treatment. Unfortunately, the process of absorbing all of this information, processing it, and knowing what questions to ask can be extremely difficult. Parents often need to make a number of difficult decisions quickly, signing consent and treatment forms, and making crucial decisions about the best way forward for their child while still processing the initial diagnosis.

The ACCO offers support as well. We have an extensive on-line library of information dedicated to all forms of childhood cancers, designed to help parents find the information they need when they need it. We also provide information on current treatment protocols and available treatment drugs, as well as details on how to become involved with clinical trials that may provide a cutting-edge treatment option. With our free informational resources and wealth of experience, we hope to offer parents access to critical information they need to make critical decisions and give their children the best possible chance of fighting–and beating–this diagnosis.

Dealing with emotions

After receiving a diagnosis of childhood cancer, everything seems to happen within a very short span of time, piling even more stress into an already traumatic and difficult situation. The hours and days after after the diagnosis can seem like a bad dream or an emotional roller coaster. All parents whose children are diagnosed with childhood cancer experience some level of stress and emotional pain, but of course every individual and every family handles this experience differently depending on their cultural background, experiences in their lives, and their personal coping styles. Childhood cancer in the family can be a great shock and the beginning of a testing time for the parents.

The ACCO was founded by a group of parents who have experienced this storm themselves, so they understand how difficult it can be to deal with a cancer diagnosis. Our extensive resources, offered for free to families facing this crisis, are designed to provide families with all the necessary support, advice, and guidance they need to help their families survive and prosper while battling this dreaded disease. From informational books and newsletters, to materials designed to offer aid and comfort and make the treatment more comfortable and understandable for children, to on-line support groups composed of parents going through the exact same thing, our goal is to help families know that they are not alone and that we are here to help!

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

Cancer in Children

When we hear the word “cancer”, most of us immediately think of adult cancers, the ones at the center of glamorous media campaigns, well-publicized fundraising drives, and focused research efforts, such as breast cancer, colon cancer, prostate cancer, lung cancer, just to name a few. When we hear the words “childhood cancer”, most of us probably think of those same cancers, just in miniature, and assume they have the same causes and the same treatment protocols. In fact, childhood cancers are very, very different than adult cancers, and require very different, specialized treatments.

“Childhood cancer” is a general term describing more than 12 different types of cancer, each of which has numerous sub-types, and each of which requires precise treatment protocols tailored to the small, still-developing bodies of children. The American Childhood Cancer Organization is dedicated to raising awareness about the unique challenges presented by childhood cancer, and the desperate need for new and better treatment protocols that will target these dangerous cancers without the permanent and disabling late term effects that are the all-too-common result of treating childhood cancers with drugs developed to cure adult cancers. We encourage you to read about these most common forms of childhood cancer below, and support the ACCO in its mission to improve the lives of children facing this dreaded disease.

Childhood Leukemia

Leukemia is the most common form of childhood cancer, covering more than 30% of all childhood cancers. Leukemia originates in the soft inner part of the bone—the marrow—which is responsible for the development of blood cells. It usually affects the development of white blood cells that are responsible for fighting infection, compromising the body’s ability to fend off disease and heal itself, but leukemia can develop in other types of blood cells as well. The two most common forms of leukemia in children are Acute Lymphocytic Leukemia (ALL) and Acute Myelogenous Leukemia (AML). The good news is that treatments for childhood leukemia have greatly improved in the past decade, and the five-year survival rate is now over 85% for ALL, and over 70% for AML.

Central nervous system and brain tumors

This is the second most widely seen cancer in kids, making up approximately 26% of all childhood cancers. There are several categories of brain tumors and the treatment and prognosis of each of the type is different, depending on a variety of factors including where the tumor is located, the areas of the brain and/or nervous system it is affecting, and how quickly it is growing. It has been observed that children who suffer from such cancer tend to develop tumors in the lower portion of their brain, such as the cerebellum, or the spinal column. Such tumors can cause trouble with object handling, dizziness, blurred vision, vomiting, nausea and headaches.

Neuroblastoma

This type of childhood cancer starts in nerve cells inside a developing fetus or embryo, and grows into tumors in nerve clusters. While neuroblastoma can develop in any part of the body, it is most commonly found in the abdomen. It is by far the most common form of cancer in infants, and is usually diagnosed between the ages of 1 and 2, although can be diagnosed in children as old as 10. Unfortunately, early diagnosis is very difficult, and in 2 out of 3 cases, the disease has already spread to the lymph nodes by the time of diagnosis.

Wilms Tumor

Wilms Tumor develops in or near one or both kidneys, and may even begin developing while the children is still in the womb. It is usually diagnosed in children between the ages of 3 and 4 years old, and is rarely seen in kids above 6 years old. It usually shows as a lump or swelling in the abdomen. The child may often have other symptoms such as poor appetite, nausea, pain, and fever. Wilms Tumor contributes to about 5% of cancers in children.

Bone cancers

Bone cancers in children usually fall into one of two main groups. The most common form—Osteosarcoma—develops in the bones around the knees or near the ends of the long bones of the legs, although it does occasionally occur in the arm bone near the shoulder, the hip bone, or even the jaw. Ewing sarcoma (Ewing family of tumors) is a less common form of bone cancer, usually forming in the pelvis, the chest wall (ribs and shoulder blades), or the middle of the long bones of the leg. While both forms of bone cancer are most commonly diagnosed in teenagers and older children, they can be found in younger children as well. There are some commonalities between these two types of bone cancer, but they respond differently to current treatment protocols.

If you are interested in learning more about these or other forms of childhood cancer, if you would like to know more about the critical need for additional research into the causes and appropriate treatments for childhood cancer, or you would like to support the ACCO’s mission to support all children coping with cancer or its long-term effects and their families, we encourage you to visit www.acco.org to find out how you can help!

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

Will the White House Go Gold®?

In response to The White House turning color in support of the Supreme Court decision favoring LGBT marriage, ACCO reached out to our contacts in the White House with the request that it be turned gold in September. ACCO respects the following response that we just received back from the White House office an hour ago. As opportunities arise and policies change, we will continue to reach out to the White House on behalf of our childhood cancer community.

“Hello Ruth,

Thank you very much for your email and for the positive support for the LGBT community.

We have asked about lighting the WH up on behalf of requests that have come in, and for pediatric cancer specifically. As I’m sure you know, many diseases and advocacy groups have a color they use for awareness and the number of requests have been very high since 2009. Unfortunately a policy was set that we would not be able to add additional annual light ups. Bill Clinton and George Bush each chose one during their Administrations; breast cancer and HIV. The White House kept those two on behalf of past Administrations. The LGBT lighting for the Supreme Court decision was a one time historic event so the policy was lifted for that one time, but won’t be annual.

We have asked if the policy will change in the future and will continue to pursue it. Thus far it seems as though adding an annual lighting, or choosing only some of the many awareness colors out of the requests we’ve received is something we won’t be able to do, at least for now.

Thank you again, and please be in touch. We’ll absolutely keep you posted if anything changes.

The White House”

Gold Ribbon Hero Zayden H

“Reason this person is a Gold Ribbon Hero: He is battling (ALL) and will be 3 in September.” – Amanda O.

Gold Ribbon Hero Katielee W

“Reason this person is a Gold Ribbon Hero: She was diagnosed on 7-23-14 with stage 3 osteosarcoma of the tibia. She endured 10 months of chemo and had the 4th growing prosthesis implant in the USA surgery on 10/29/14. She has finished treatment however she is awaiting a multitude of surgeries to correct complications from the original surgery. She has suffered severe depression and fights chronic pain every day of her life. She missed her 8th grade year if school and is goin to miss the beginning part of her freshman year of high school. She’s now battling a huge weight gain because she cannot ambulate at all and every bit of this is knocking her self esteem further in the dirt. This would be an awesome thing to have done for her.” – Jenny M

2015 Go Gold® Shirt Name Submission

Submit Your Warriors Name for Our 2015 Go Gold® Shirt (SUBMISSION NOW CLOSED)

It’s that time again! As we approach Childhood Cancer Awareness Month in September, we want to be sure everyone has their 2015 Go Gold® teeshirts. This year, we are going to again feature the names of Childhood Cancer Warriors who have fought or are still fighting cancer.

This year, however, we have a new and improved way of collecting these precious names. We have created a submission form at http://s.acco.org/submitname. We will only be collecting names using this form to help streamline the process, so please click on the button below, fill out the information on the form and then hit the big yellow “Sign Up” button and that’s it! We are collecting names until the deadline of Wednesday, July 8, 2015. In order for families to be able to receive their shirts by September 1st, we have to keep this date firm. Any names submitted after July 8th, 2015 will be saved for our next project. Thanks for your understanding.

*NAME SUBMISSION FOR THE 2015 GO GOLD® SHIRT IS NOW CLOSED. YOU MAY STILL REGISTER YOUR CHILD’S NAME FOR THE NEXT PROJECT BY USING THE BUTTON BELOW*

We are so excited to Go Gold® this September for all our Warriors and Families! We can’t wait to see how many names are submitted! Thank you!

Details: We will only be collecting names for the 2015 Go Gold® Shirt until July 8th. We will post a final list for review on the 9th or 10th (so please check back then) and expect to have the design completed and the shirts ready for purchase on or around the 13th. Shirts will be available for purchase for approximately three weeks. When the shirts are available for purchase, we will post the link on our website, social media and will send out an email to anyone who has submitted a name. When you submit your child’s name to the list, we’ve added a confirmation email that will be sent within 24 hours. If you would like us to confirm that the name has been submitted, please send us a private message with the email used to submit the name or email CPerry@acco.org. In order for families to be able to receive their shirts by September 1st, we have to keep the cutoff date firm. Any names submitted after July 8th will be saved for our next project. There may be a need for more than one shirt with the names separated to accommodate all entries as each shirt can fit approximately 1,500 names. Please contact us with any further questions.

President Obama announced intent to appoint Dr. Peter C. Adamson to a key Administration posts

Friends,

We are pleased to be able to announce that Dr. Peter Adamson, attending Physician in the Division of Oncology at The Children’s Hospital of Philadelphia (CHOP) has been named by President Obama to the National Cancer Advisory Board today. Many of you have raised your voices and expressed the importance of having a pediatric oncologist in the Board, so we are gratified to be able to make this announcement.

We are also pleased that this announcement comes as the Administration, including the National Cancer Institute (NCI), is scaling up the Precision Medicine Initiative, which was announced by President Obama in his State of the Union address earlier this year. This initiative aims to enable a new era of medicine through research and technology that empowers patients, researchers, and providers to work together toward development of individualized treatments. As a part of this initiative, the President has included a request for $70 million in funding for NCI to scale up efforts to identify genomic drivers in cancer and apply that knowledge to the development of more effective approaches to cancer treatment. The Initiative also calls for the development of a research cohort of a million or more participants.

As we work with the teams at NIH, FDA, and ONC to scale and shape the cohort and this Initiative as a whole, we are eager to work with you to ensure that the pediatric cancer community’s voices are heard. You can learn more about the Initiative and sign up for updates here: www.whitehouse.gov/precision-medicine. NIH will also be hosting a workshop on patient participation in the cohort on July 1 and 2, and I would encourage you to tune in and participate online. Information on ways to engage in that workshop is located here: www.nih.gov/precisionmedicine/events.htm.

We were pleased to be able to bring the pediatric cancer community together last September and hope to continue to build upon the dialogue we began at that convening, including the announcement that the White House Office of Management and Budget would be disaggregating spending in a way that would report pediatric cancer research totals.
Best,

Fae M. Jencks
Senior Policy Advisor for Public Engagement
White House Office of Science and Technology Policy
202-456-6008 | fjencks@ostp.eop.gov

@whitehouseostp

www.whitehouse.gov

President Obama announced his intent to appoint the following individuals to key Administration posts:

Dr. Peter C. Adamson, Appointee for Member, National Cancer Advisory Board

Dr. Peter C. Adamson is attending physician in the Division of Oncology at the Children’s Hospital of Philadelphia (CHOP), a position he has held since 1999. Dr. Adamson has been Chair of the Children’s Oncology Group, supported by the National Cancer Institute (NCI), since 2010. He was Chief of the Division of Clinical Pharmacology and Therapeutics at CHOP from 1999 to 2014, and also served as Director of the Office of Clinical and Translational Research from 2005 to 2011. He served as Professor of Pediatrics and Pharmacology and Associate Professor of Pediatrics and Pharmacology at the University of Pennsylvania from 1999 to 2006. Dr. Adamson was an investigator in the Pediatric Oncology Branch of NCI from 1995 to 1999, and he served in the United States Public Health Service from 1994 to 1997. Dr. Adamson was the Children’s Cancer Foundation Research Scholar from 1992 to 1994. He was a Biotechnology Fellow from 1990 to 1992 and a pediatric hematology/oncology fellow at NCI from 1987 to 1990. He began his pediatric career as a resident at CHOP from 1984 to 1987. Dr. Adamson received a B.A. from Wesleyan University and an M.D. from Cornell University.

Dr. Deborah Watkins Bruner, Appointee for Member, National Cancer Advisory Board
Dr. Deborah Watkins Bruner is currently the Robert W. Woodruff Professor of Nursing at the Nell Hodgson Woodruff School of Nursing, Professor of Radiation Oncology, and Associate Director for Outcomes Research at the Winship Cancer Institute of Emory University, positions she has held since 2011. Before joining Emory University, Dr. Bruner served at the University of Pennsylvania as Professor of Nursing and Radiation Oncology from 2006 to 2011 and as co-Leader of the Cancer Prevention and Control Program at the Abramson Cancer Center from 2008 to 2011. From 1989 to 2006, Dr. Bruner held various positions at the Fox Chase Cancer Center, including Nurse Manager/Clinical Specialist in the Department of Radiation Oncology, Director of the Prostate Cancer Risk Assessment Program, and Director of the Symptoms and Outcomes Research Program. From 1986 to 1989, Dr. Bruner was a Gyn-Oncology Clinical Nurse Specialist/Program Coordinator at the Albert Einstein Medical Center. She served as Research Nurse for Burns and Trauma at Crozer-Chester Medical Center from 1985 to 1986. Dr. Bruner began her career as a Staff Nurse at the Crozer-Chester Medical Center from 1978 to 1985. Dr. Bruner received a B.S.N. from West Chester University, an M.S.N. in Oncology and an M.S.N. in Administration from Widener University, and a Ph.D. from the University of Pennsylvania.

Dr. Yuan Chang, Appointee for Member, National Cancer Advisory Board
Dr. Yuan Chang is currently Professor of Pathology at the University of Pittsburgh, a position she has held since 2002. Dr. Chang has been a Distinguished Professor of Pathology since 2012, and is the University of Pittsburgh Cancer Institute Chair of Cancer Virology. Dr. Chang served in a few positions at the Columbia University College of Physicians and Surgery during his tenure, first as Assistant Professor of Pathology from 1993 to 1997, Associate Professor of Pathology from 1997 to 2000, and then as Professor of Pathology from 2000 to 2002. From 1991 to 1992, Dr. Chang was Clinical Instructor in the Department of Pathology at Stanford University Medical Center. She has also held a number of clinical assignments, including Assistant Attending Pathologist at Columbia Presbyterian Hospital from 1993 to 1997, Associate Attending Pathologist from 1997 to 2000, and Attending Pathologist from 2000 to 2001. She is a member of the National Academy of Sciences. Dr. Chang received a B.S. from Stanford University and an M.D. from the University of Utah College of Medicine.

Dr. Timothy J. Ley, Appointee for Member, National Cancer Advisory Board
Dr. Timothy J. Ley is Director of the Stem Cell Biology Section in the Division of Oncology at Washington University School of Medicine, a position he has held since 2000. Dr. Ley has also served as the Associate Director for Cancer Genomics at The Genome Institute at Washington University since 2008. He has held various faculty positions at Washington University since 1986, including Professor of Medicine and Genetics, Director of the Hematopoiesis Research Center, and Director for Basic Science at the Alvin J. Siteman Cancer Center. From 1984 to 1986, Dr. Ley was senior investigator for the National Heart, Lung, and Blood Institute at the National Institutes of Health, where he previously served as Clinical Associate from 1980 to 1983. From 1983 to 1984, he was a Hematology-Oncology Fellow at Washington University Medical Center. He completed his residency at Massachusetts General Hospital from 1979 to 1980, and he served as a Commissioned Officer with the United States Public Health Service from 1980 to 1986. He is a past president of the American Society for Clinical Investigation and was Chair of the Board of Scientific Counselors for the National Human Genome Research Institute from 2009 to 2013. He is also an elected member of the Institute of Medicine of the National Academy of Sciences and of the American Academy of Arts and Sciences. Dr. Ley received a B.A. from Drake University and an M.D. from Washington University School of Medicine.

Dr. Max S. Wicha, Appointee for Member, National Cancer Advisory Board
Dr. Max S. Wicha is the Madeline and Sidney Forbes Professor of Oncology at the University of Michigan Comprehensive Cancer Center, a position he has held since April 2015. Dr. Wicha has served as Attending Physician for Medical Oncology In-Patient and Consultation Services for the University of Michigan Health System since 1980. In 1986, he founded the University of Michigan Comprehensive Cancer Center and served as its Director since its inception until earlier this year. Dr. Wicha has held various positions at the University of Michigan Medical School since 1980, including Assistant Professor, Associate Professor, Chief of the Division of Hematology/Oncology, Director of the Simpson Memorial Research Institute, and Distinguished Professor of Oncology. From 1977 to 1980, Dr. Wicha served in several capacities at the National Cancer Institute including Research Associate, investigator in the Laboratory of Pathophysiology, and then as a Clinical Oncology Fellow. Dr. Wicha served as a Commissioned Officer in the United States Public Health Service from 1977 to 1980 and completed his residency at The University of Chicago Hospitals and Clinics from 1975 to 1977. He is a past President of the American Association of Cancer Institutes and a Fellow of the American Academy of Arts and Sciences. Dr. Wicha received a B.S. from the State University of New York at Stony Brook and an M.D. from Stanford University School of Medicine.

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

Gold Ribbon Hero Emily D

“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.

#StepUp: Make Childhood Cancer a National Child Health Priority

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.

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: