Dear PAC2,

welcome to the October 2013 report on the news and events in the childhood cancer community.   The 6th Annual PAC2 Holiday Shopping Guide will be posted later this week, with all sorts of ways you can find a perfect gift and support the fight against childhood cancer.  Read on about the incredible efforts, amazing people and unforgettable kids.

Research

  • Over 90% of researchers say that lack of funding for childhood cancer research is the main obstacle to saving our children's lives.  It's not like this is 'we can't finish the memorial or the bridge due to lack of funding'.  This is saving children's lives and the only thing holding them back is money. Today we fight. Childhood Cancer Research at Risk of Losing Key Talent, According t...
  • Update on the just-about-to-launch clinical trial on the effects of animal-assisted therapy (AAT) on pediatric oncology patients and their parents    Zoetis and American Humane Association Announce Launch of Clinical ...
  • Can you help our friends at KIDS V CANCER who write - Did you send the tumor tissue and/or blood of your child with cancer to FOUNDATION MEDICINE? If so, we would like to hear from you. Contact Jenn@kidsvcancer.org.                         
  • The Cancer Center at CHOP hosted its 2nd "First Steps Toward Healing" webinar on Tuesday, October 22 from 7-8p EST. Psychologist Lynne Kaplan and Child-Life Specialist Sarah Pajak discussed how childhood cancer affects a patient's siblings.  Check it out here -  The Sibling Experience
  • The good news is that Proton Therapy offers distinct advantages for treatment over traditional radiation, and its use is spreading. But, "Even with 11 operating centers in the U.S. now, access remains an issue because as many as 3,000 newly diagnosed children might be candidates for proton therapy each year, but we do not have the capacity to treat all of them. The good news is that many more new centers should become operational in the next 5 years, which will allow more children to take advantage of this advanced technology."  Pediatric Proton Therapy Study Reveals 33% Increase In Cases Treated
  • At least in Switzerland, childhood cancer survivors are less likely to have life partners than their peers. Most childhood cancer survivors with a life partner were not married. From the Swiss Childhood Cancer Survivor Study -  Life partnerships in childhood cancer survivors, their siblings, an...
  • You’ve seen this before, but it’s just incredible that a major international science magazine can publish this and NOT have the world take notice….. Feb 2013 Scientific American magazine article on a study conducted by a panel of heath care experts from around the world that concluded  Childhood Cancer Is a Neglected Disease
  • If you'd like to directly fund a research project for rhabdo here's your shot....Dr. Keller is at the OHSU Knight Cancer Institute in OR. Another novel approach to raising funds, crowd-sourcing.  Consano
  • Reports in: Average time in hell waiting for pathology results before you and your child's life is changed forever - 1 week.   Pathology Turnaround Time in Pediatric Oncology
  • Another new Phase 1 trial using immunology funded by our buds at Solving Kids' Cancer and The Catherine Elizabeth Blair Memorial Foundation.   New Trail
  • In this new Phase 1 Trail researchers at the Children's Oncology Group will test an antibody from the biotech firm Morphotekin on pediatric patients with relapsed/refractory solid tumors.  New MORAb-004 Phase I Study In Pediatric Patients With Relapsed/Ref...
  • We share the good and the bad...."Certainly survivors need to be followed for mental disorders," said Dr. Lillian Meacham Winship Cancer Institute of Emory University in Atlanta. Meacham, a pediatric endocrinologist who was not involved in the current study, said hospital survivor programs should keep a psychologist embedded on staff.  Childhood Cancer Survivors More Likely To Develop Mental Health Dis...
  • Go easy on that coffee if you're pregnant. The findings of a new study that reviews previous work suggests that maternal coffee consumption during pregnancy may increase the risk of childhood AL. Because of limited studies, further prospective studies are urgently needed to explore the adverse effect of coffee consumption on childhood AL.  Maternal coffee consumption during pregnancy and risk of childhood ...
  • Research has shown children with cancer getting chemotherapy on an outpatient basis develop three times as many bloodstream infections from their central lines than their hospitalized counterparts. Common causes of infection are thought to be mishandling the central line or handling too frequently. Infections can lead to serious complications, including organ damage and even death.   Simple Outpatient Protocols Reduce CLABSI by 48%
  • This study looks at 25 other studies that focused on in-vitro fertility (IVF) treatment and childhood cancer. Overall, IVF children had a 33% increased risk of childhood cancer, with a 65% increased risk for leukemia and 88% increased risk for brain or central nervous system cancers. There was no cause identified.  Researchers Dissect Link Between Fertility Treatment and Childhood ...
  • "Cardiopulmonary diseases are the leading non-cancer causes of death among childhood cancer survivors, who carry an 8- to 10-fold greater risk of cardiac death and a 10-fold greater risk of stroke, the authors wrote online in Circulation: Journal of the American Heart Association."  AHA Focuses on Cardiac Risks of Kids' Cancer Tx
  • "Contrast-enhanced ultrasound (CEUS) imaging 'is emerging as a very good and safe mechanism for evaluating the effectiveness of cancer therapy in children without having to use CT, which exposes the child to ionizing radiation,' Dr. Jamie Coleman told the International Contrast Ultrasound Society (ICUS) at their annual conference in Chicago." Link                                                                                                     
  • This Week in Pediatric Oncology is brought to you by our buds at Solving Kids' Cancer and this week features Dr Joe Neglia, head of Ped Onc at U MN and leader of the Childhood Cancer Survivor Study, the longest running study of what happens with survivors. Joe talks with Dr Tim Cripe and Donna Ludwinski about secondary cancers in survivors.  New TWiPO Podcast: Secondary Cancers Among Childhood Cancer Survivors with Featured Gu...
  • Our friends at CureSearch held a free webinar next Tuesday, Oct 29: Handling Emotions During Cancer Treatment. Webinar Series for Parents of Children with Cancer: CureSearch 
  • We know a lot more about genetic mutations and cancer than we once did. Here's an explanation about why it matters.  What’s the Point of Finding Cancer Mutations?
  • “A child’s serious illness can cast a very long shadow across a family, often for years after the crisis has passed. . . . As parents, we want our kids to be safe,” Dr. Kassam-Adams said. “Once you’ve been through this, you know they will never be 100 percent safe, and it’s hard to stop thinking about it.” -- A discussion of parental trauma and anxiety.  Haunted by a Child’s Illness
  • Contract enhanced ultrasounds to evaluate blood flow to a tumor are being tested as a replacement for radiation-based testing methods (e.g., CT scans). This would limit the dose of radiation to the patient, always a good thing. Now set for further testing at St. Jude Children's Research Hospital.  Tests to Replace radiation
  • The Childhood Cancer Database Project was created by Alex's Lemonade Stand Foundation to better understand how childhood cancer affects families. The goal is to measure the personal and economic impact of childhood cancer and find ways to support families through the journey. If you have a child who received a cancer diagnosis, answering the surveys and sharing your experiences could help make a difference for other families.  My Childhood Cancer.org
  • From American Childhood Cancer Organization: Infographic on the many ways childhood cancer affects families financially.   Cancer Financial Graphics
  • In 2012, about 1,200 kids underwent a bone marrow transplantation....YOU can Be The Match!!!!       Be the Match

Fundraising

  • You know how we feel about collaboration. Another example from Solving Kids' Cancer and The EVAN Foundation! Thanks guys!!  Together with our charity partners, like The EVAN Foundation, we're bringing new treatment options to children through clinical trials.  Solving Kids' Cancer       
  • We neglected to congratulate our bud Jeff Gordon Online (actually, offline too) for his NASCAR win on Sunday. Jeff brings in Tony Stewart to help out with his efforts for the Jeff Gordon Children's Foundation.  Jeff Gordon Children's Foundation
  • St. Baldrick's Foundation ’s funding total for the year has reached to more than $24.5 million awarded in 2013.   St. Baldrick's Foundation
  • "We can only hope that the national attention being brought to the NIH's funding of childhood cancer research will not only bring this issue into the public eye, but keep it there."  Alex's Lemonade Stand  Government Shutdown, Childhood Cancer and the Question We Should Be...
  • It's not just MLB, the NBA's Milwaukee Bucks are supporting the MACC Fund - Midwest Athletes Against Childhood Cancer, Inc. at tonight's game in Milwaukee, Wisconsin. A long-running tradition, it's already raised over $1.4 million for childhood cancer research! MACC Fund - Midwest Athletes Against Childhood Cancer, Inc.
  • Another collaboration of two great causes: Headbands of Hope and Penn State Dance Marathon (THON) teaming up to raise funds for childhood cancer research.               
  • All our friends Beat NB and NB Alliance know where the money goes. They've raised funds and supported the amazing Dr. Giselle Sholler, chairwoman of the Neuroblastoma and Medulloblastoma Translational Research Consortium during her time at the Van Andel Institute. Now, they want to make sure that money is spent as intended - for Sholler's childhood cancer research. Unfortunately, it's a battle to make that happen now that she and NMTRC have moved on to Helen DeVos Children's Hospital.  Sholler’s childhood cancer funds    Parents Pressure...
  • Our buddy Jess at Headbands of Hope has a ton of spirit. Today, she had her coffee and did whatever Tabata is, and shared a new sneak peak at the latest headbands! For every headband purchased, one is given to a girl with cancer and $1 is donated to the St. Baldrick's Foundation to fund life-saving childhood cancer research.  Headbands Sneak Peek
  • Terrific news!!! The Alex’s Lemonade Stand Travel Fund has expanded to include 8 new hospitals! We’re now able to help families who face the need to travel for childhood cancer treatment at 38 medical institutions across the US and Canada!
  • We are thankful that The Leukemia & Lymphoma Society has funded a $6.25 million study for relapsed or non-responsive ALL cases. We hope they will continue and increase their funding for childhood cancers. Thanks LLS!  NYU Cancer Institute Leads $6.25 Million Research Effort to Find New Therapies for the Most Common Form of Childhood Cancer  
  • Grand Canyon University Joins Max's Ring of Fire, The Ronan Thompson Foundation... -- SAN DIEGO,...www.prnewswire.com  Our friends at Max's Ring of Fire and The Ronan Thompson Foundation collaborating to fund research for childhood cancer! Teaming up with Grand Canyon University for a Run To Fight Cancer  
  • Hats off to Rick Parish who founded The Telethon Adventurers with the aim of raising $2 million for childhood cancer research and treatment. So far, he's at $5 million and not stopping. Adventurers climb mountains, skydive, cycle thru the Alps, whatever it takes to raise money for #childhoodcancer research. "Like" 'em!    The Telethon Adventurers
  • Our thanks to Northwestern Mutual for their continued support of Alex's Lemonade Stand Foundation and Starlight Children's Foundation, as shown by this $700,000 donation!!  Northwestern Mutual Expands Support
  • THANK YOU! Five hundred miles and over $360k raised to fight childhood cancer with love. What an honor to wrap the ride by awarding $70,000 in grants to Children's Hospital Los Angeles. Pablove Across America 2013 may have crossed the finish line, but we won't stop fighting childhood cancer with LOVE!  Pablove Foundation
  • Alex’s Lemonade Stand Foundation, a nonprofit fundraiser for cancer research, announced this week the grants to five researchers across the country . Each will receive a $100,000 springboard grant to jumpstart a promising investigation. Springboard grants were created in response to government cuts in research funding available through the National Institutes of Health.   Pediatric Cancer Grants
  • Have you ever played kickball? It's fun, can be played virtually anywhere & has raised nearly $2 million to benefit children's cancer research across the country. Our buds at Jeff Gordon Children's Foundation, Mini's Mission "Burn Rubber to Help Another" and the Cleveland Indians are all supporters. Just another way you can #dosomething to stop #childhoodcancer!   Kickball
  • NYDM Dance Marathon  www.beposfdn.org  NYDM, a dance marathon at New York University benefiting The Andrew McDonough B+ Foundation is over halfway to their goal, raising over $27k! Their goal is to raise $46k for the 46 kids diagnosed with cancer each school day. Hats off to NYDM and to B+ for all the hard work making these connections that benefit #childhoodcancer.  DANCE
  • Whether you're a New York Giants fan or a Washington Redskins fan, actually no matter who you root for, you gotta love NFL stars Pierre Garçon and Mark Herzlich competing off-the-field to help fund childhood cancer research through our buds at the St. Baldrick's Foundation.  Pro Football Rivals Go ‘Head-to-Head’ to Tackle Childhood Cancer.  Pro Football support
  • Whatever it takes.  Weymouth, Mass., man fights cancer, 1 beer at a time
  • Chili's and their customers come through for St. Jude Children's Research Hospital in a big way: over $50 million raised in the last decade. $50 Million Later, Guests and Team Members Prove 'More Hope' Really...  This September's National Childhood Cancer Awareness Month marked the 10-year anniversary of the partnership between Chili's® Grill & Bar and St. Jude Children's Research Hospital®, and guests and team members as well as St. Jude families and friends… Chili’s raises funds in support of research
  • We posted this and many of you commented wondering how we could possibly be critiquing Ronald McDonald House Charities (RMHC) -- to be clear, we are NOT criticizing RMHC (having stayed there and knowing what a great charity it is)!! This article, like it or not, is questioning McDonald's level of funding directed to RMHC, which, according to the article, is only about 20% of RMHC total revenue, and even less on a local house basis (10%). Clowning Around With Charity: How McDonald's Exploits Philanthropy ...
  • Our thanks to Devin Thorpe, Forbes & Your Mark On The World, for this interview of David and Richard Plotkin, Max Cure Foundation. Devin recently interviewed John Krafcik, CEO of Hyundai USA about Hyundai Hope On Wheels. Please show your support for his interviews by commenting or sharing on FB.  Hedge Fund Trader Turned Social Entrepreneur Raises $2 Million For ...
  • A check box on the state income tax form to donate to childhood cancer research. They made it happen in IL (see - https://www.facebook.com/illinoischildhoodcancerresearchfund), and now there's a resolution for NJ! It needs to be an option in every state. Who's next? West Milford representatives seek to expand state tax form for a good cause - See more at: Tax for a good cause

Writings

Awareness & Outrage

  • Gabriella Miller, childhood cancer awareness advocate, dies at 10 - Gabriella’s death Godspeed Gabriella. Please share Gabriella's message: "Talk is bullshit. We need actions."

  • "Why have I heard of no presidential candidate, and no religious potentate, publicly furious over the unnecessary death of an eight-year-old with ALL? Why is it not considered immoral to let these children die and do nothing to save their lives?" - George Sledge Jr., MD, Chief of Oncology, Stanford Department of Medicine - Shame & Anger
  • One of the granddaddys of childhood cancer petitions. Let's get to 50,000 signatures and deliver this to The White House and our Congressional 'leaders'. Only 3000 more to go... Cure Childhood Cancer - Raise Awareness & Funding
  • Before he hit a 3-run homer to win Game 5, Boston Red Sox Jonny Gomes held up a I Stand Up To Cancer for Brady, a 5-year old battling cancer. Jonny Gomes a hit for kid fighting cancer
  • A nice background story on Boston Red Sox reliever Craig Breslow and the Strike 3 Foundation he runs to fight childhood cancer. Craig's sister was treated for cancer when he was 12. Tonight, he might close the game for Jon Lester, who was diagnosed with cancer at age 22 but has come back to be tonight's starting pitcher for the Red Sox.
  • Cure KY Kids needs to get 900 commitments so that the Kentucky Department of Transportation will produce a license plate honoring a supporting childhood cancer. New License Plate Drives Efforts To Cure Childhood Cancers
  • The James Fund twelve years after James: Remembering James Birrell and what he taught us: “Be open. When you find something that brings you hope, give it everything you have and everything it deserves.”   PETERBIO: The legacy of the late James Birrell
  • Last night, B+ Hero Drew asked if he could go for a bike ride around the block and for tape. 20 minutes later, his mom went looking for him and found his bike parked in front of a neighbor's house. She found him as he put money into a little donation bucket he taped on to the front of his bike. The sign on his bike read: "Donations for cancer 50¢".  On his own, Drew decided to go around the block, in his neighborhood, asking for donations for B+ to help kids like him. In 20 minutes, Drew raised $6. B+ Heroes are incredible kids. They go through hell and don't turn away. Rather, they look back and help those going through hell after them.   B+Heroes
  • It's been said of Ken Burns (PBS) that “More Americans get their history from Ken Burns than any other source.” Well let's hope that more Americans know about childhood cancer after he interviews long-time CureSearch supporters the Browns from Clyde, Ohio. (4th Annual Alexa Brown Memorial 5k Video - http://youtu.be/73XA0VnvjYU
  • 8-Year-Old Jack Hoffman Is Beating Brain Cancer After Nebraska Touchdown Run  foxnewsinsider.com Jack from Team Jack on Fox & Friends this morning spreading the word to Elisabeth Hasselbeck and Brian Kilmeade.....'the treatments he took are archaic'.... After Memorable TD Run, 8-Year-Old Jack Hoffman Is Beating Cancer
  • Identical twins, Jace and Gage were diagnosed with neuroblastoma when they were born.            Infant twins fight rare cancer since birth - Video
  • Childhood cancer parent Richard Nares is in the running for CNN Hero of the Year. His group provides transportation and support for low-income children with cancer.  CNN Hero
  • "Everyone knows what the color pink is for but not that September is National Childhood Cancer Awareness Month," says John Lividini, Kendal's father. "Funding for pediatric cancer is a fraction of what it should be. We're trying to make a difference."  Quietdrive Fights Pediatric Cancer With New Song 'Even When I'm Gone'  
  • But Tara would never let a little thing like cancer get in the way of living life to the fullest. Her eternal smile and optimism have become a source of inspiration for so many others."  The Night Cancer Survivor Tara Sankner Upstaged a Redskin
  • From 2007, despite the numerous awareness campaigns, many women don't know the key facts about breast cancer: "Over half of women, for instance, said family history is the most common risk factor for breast cancer. But the truth is that genes known to increase the risk are rare and are estimated to account for only 5 percent to 10 percent of breast cancer cases."  Despite Awareness Campaigns, Breast Cancer Myths Linger
  • This October, let's remember:  "Curing childhood cancer is the equivalent of curing breast cancer in terms of productive life years saved"  Dr. Eugenie Kleinerman, Head, Division of Pediatrics, MD Anderson Children's Cancer Hospital    lies, damned lies and statistics........

Advocacy and the Paid Holiday

  • Speak Up for Kids’ Cancer gives a voice to the vast network of volunteers, donors, and participants involved in the work of the St. Baldrick's Foundation, the largest private funder of childhood cancer research grants, second only to the U.S. government.  Speak Up
  • Waiting for Care: The Shutdown and Kids with Cancer  Latest blog from our friends at Children's Cause for Cancer Advocacy is out!  Shutdown-Kids Waiting…
  • Maddie Major has leukemia.. Meet two cancer patients whose treatment is on hold due to US gov shutdown: an 8yo girl, and a father of 3.  Clinical Trial Shut Down for Maddie
  • At the National Institutes of Health, nearly three-quarters of the staff was furloughed. One result: director Francis Collins said about 200 patients who otherwise would be admitted to the NIH Clinical Center into clinical trials each week will be turned away. This includes about 30 children, most of them cancer patients, he said.  The shutdown could prevent kids with cancer from getting treatment
  • Karen Armenta, a 5-year-old from Wisconsin, is one of the lucky (that should be in quotes) few. She was found to have leukemia when she was 4, said her mother, Tania Santillan, but after intensive treatment, including chemotherapy, she seemed to have beaten it. But last week, a blood test turned up bad news: the cancer had come back.  Clinical Trials Continue, but Only at a Crawl

Three Stories……

Hyundai Hope on Wheels Makes New Donation of $10.25 Million During September National Childhood- Hope On Wheels had a great September.   John Krafcik, president and chief executive officer of Hyundai Motor America, has a lot to say about corporate social responsibility: "It’s fair to say that ten years ago, there wasn’t a fully engaged commitment throughout the company supporting the worth of CSR. Good people questioned the ROI. But as we’ve ramped up our efforts to fight pediatric cancer through Hope on Wheels, we’ve seen a rewarding change in how CSR is viewed here."   Social Responsibility

Did you know that one year after passage of the Creating Hope Act (thank you to all of you that took action to support the legislation!), at least four pharmaceutical companies have applied for designations for CHA vouchers with FDA, and that FDA has already authorized one voucher? Listen to our bud Nancy Goodman, founder of KIDS V CANCER tell you all about it at the 2013 Childhood Cancer Summit hosted by the Congressional Childhood Cancer Caucus.   Video from Kids V Cancer

The Coalition Against Childhood Cancer (CAC2) unites over 50 childhood cancer organizations including Alex's Lemonade Stand Foundation, The Andrew McDonough B+ Foundation, Solving Kids' Cancer, Children's Cause for Cancer Advocacy, KIDS V CANCER, Jeff Gordon Children's Foundation, Arms Wide Open Childhood Cancer Foundation, Bear Necessities Pediatric Cancer Foundation, ConKerr Cancer, CURE Childhood Cancer, many others, and, of course, PAC2!   CAC2

Thanks Marcia for your help!  Have a Happy Thanksgiving PAC2!

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