Dear PAC2,

 

Happy New Year!  2014 will mark PAC2's sixth full year of existence.  We asked three leaders of the childhood cancer community to remark on what the past five years have brought.  We are honored to share their thoughts below, and then we get to the meat of news, events, research findings, stories, and information around the childhood cancer community.

 

The past five years marked the beginning of an era of research is that is increasingly focused on developing targeted treatments for children with cancer, treatments that offer the prospect of more effective and potentially less harmful therapies. Advances made highlight the need for more research that will let scientists unravel the complexities of the more than one hundred different types of cancers that occur in children. The past five years also highlight the need for greater involvement of the biopharmaceutical industry, to partner with the National Cancer Institute and philanthropic organizations, in the development better treatments for children with cancer. As importantly, the childhood cancer community is increasingly working together, which is essential to everyone’s efforts to improve the outcome for all children with cancer. ~ Peter C. Adamson, MD, Chair, Children's Oncology Group, Chief, Division of Clinical Pharmacology & Therapeutics, The Children's Hospital of Philadelphia

 

The modern world wants results now, and when it comes to our children, we want them yesterday, but medical research is often at odds with modern norms.  While today’s researchers employ advanced thinking and technology, research has actually been called “insidious incrementalism” because advances are made over time by researchers from all corners of the globe, each building upon the discoveries of their predecessors.  When breakthroughs are made, they appear to be overnight sensations, but were actually decades in the making.  Families of children fighting cancer know the odds, and recognize no one organization – no matter how celebrated – is “doing it” alone, as no hospital or organization can single-handedly achieve the scale of breakthroughs needed.  However, the general public still does not understand this.  By focusing on research progress in ALL as representative of all childhood cancers, we’ve created the false impression that every pediatric cancer is properly resourced and on the verge of a break-through.  For the childhood cancer community to achieve a comprehensive and lasting cure for every child, we must embrace a unified approach, where each individual and organization reaches beyond our present circles to comprehensively educate the public, media, and government and demand the financial support that makes cures possible. ~ Kathleen Ruddy, Chief Executive Officer, St. Baldrick’s Foundation

 

Congratulations to PAC2 on 5 years of providing support, information, and inspiration to the childhood cancer community! Since PAC2 was created, the world of childhood cancer has certainly changed, yet in many ways it has stayed the same. As a community, we have seen real progress in awareness and research, but sadly, with each passing day, we continue to see more precious children follow in our daughter Alex’s footsteps in facing a diagnosis and subsequent battle against childhood cancer. Although it has been frustrating to see the lack of widespread awareness and adequate funding for childhood cancer, it has also been empowering to see that the people standing behind childhood cancer patients all along – their parents – have become the most vocal advocates and fundraisers in the fight. Whether it is through the creation of a foundation like ours, joining forces with an already existing one, or lending your voice to the cause, parents are increasingly taking control in the battle against childhood cancer, raising both awareness and funds, and truly making a difference in the fight. As a community we have a long way to go until we are able to secure the future for all children battling cancer, and in the meantime, it is imperative, that we parents, our children’s keepers. continue to lead the charge and inspire others to do the same. ~  Liz Scott, Alex’s Mom/Co-Executive Director, Alex’s Lemonade Stand Foundation

As we look ahead to a new year, we are energized by the efforts of those around us.  We are honored to share their stories and news with you as step-by-step, a small, dedicated group of individuals change the world of childhood cancer. 

Fundraising

When the scientist in charge of the nation’s research enterprise frets about “deep long-term damage” to biomedical research, we ought to pay particular attention. The research NIH funds is precisely what we should demand from government. It is critical to our future as a healthy society and world leader in science, and it’s not something the private sector will do in government’s stead. Do political leaders really want to explain to future generations why they let the United States walk away from a great age of biomedical discovery?  NIH research is ailing from the budget squeeze 

Our friends at Alex's Lemonade Stand Foundation announce the awarding of over $7 million in new medical research grants in the first cycle of 2013. The grants will extend to doctors and researchers, at 24 institutions and universities in 14 states across the country, totaling 42 new grants. Thanks seems too little, but thanks!  Alex’s Lemonade Stand Foundation Awards 2013 Medical Grants 

Bear Necessities Pediatric Cancer Foundation celebrated the New Year in style throwing one of the most exclusive parties in the Windy City, happening at JW Marriott Chicago. Bring in the New Year Like Never Before at JW Marriott Chicago 

Good news on Ewing's Sarcoma - researchers plan to launch an open clinical trial to test a novel kind of Immunotherapy, or cancer vaccine, which has been previously tested in adults, but has yet to receive the funding or support for a children’s version of the trial.  New Children’s Vaccine For Ewing’s Sarcoma To Be Tested At Mary Crowley Cancer Research Centers, Thanks To New Funding 

"Last Friday Nashville favorite, Blackberry Smoke held a homecoming show at The Tabernacle in Atlanta. At this show the band donated $30,000 to the Aflac Cancer Center of Children’s Healthcare of Atlanta."  Blackberry Smoke Donates $30,000 To A Great Cause 

"Northwestern Mutual Foundation is donating $2 million to build a special area inside Children's Hospital of Wisconsin for children who receive outpatient treatment of cancer and blood disorders."  Northwestern Mutual Foundation to donate $2 million to Children's H... 

Wow! Four generations shaving their heads to raise money for childhood cancer research? Talk about one awesome family!   St. Baldrick’s Foundation 

Over the last several years, Giant Oil has raised over $220,000 for the Pediatric Cancer Foundation, which focuses on finding less toxic treatments for children’s cancer.  Giant Oil Supports Pediatric Cancer Foundation 

Alex's Lemonade is thrilled to have launched a new section their website appropriately titled, Where the Money Goes, to provide a comprehensive and easy to navigate view of how your donations are making an impact on kids with cancer!  

Nine year old Mini Tyrell has been racing since he was four years old. A few years ago, one of his friends was diagnosed with a brain tumor. Ever since that moment, he has dedicated his career to the fight against cancer, and has raised over $175,000 for pediatric cancer through Mini's Mission "Burn Rubber to Help Another."  'Mini' Tyrell races to win the fight against pediatric cancer 

But there’s another color, another cancer, that doesn’t get as much attention or funding: gold to recognize childhood cancer."  Funding needed for our littlest cancer patients

Our thanks to CureSearch!!  Stanford researchers receive $1.37M grant to study on immune systems of pediatric cancer patients

We missed this in September! Our thanks to Dell Services as they continue their support for NMTRC by having employees walk and raise over $25 for childhood cancer research in September! Now remember; Hyundai car, Dell computer, NW Mutual Insurance, eat at Chilli's, shop Old Navy, etc!! (all big supporters of the fight against childhood cancer)   NMTRC

Our buds at Hyundai Hope On Wheels headed back to Maui, Hawaii to raise $ for childhood cancer research. "We are excited to bring our signature 5K back to the beautiful island of Maui and raise money for pediatric cancer programs in Hawaii," said Zafar Brooks, Director of Corporate Social Responsibility, Hyundai Motor America.  Hyundai Hope On Wheels Announces Return Of Its 5K Run/Walk In Maui Benefiting Childhood Cancer Research

On Saturday, Nov. 23, thousands of participants in 75 cities gathered for the St. Jude Children's Research Hospital Give Thanks Walk, a noncompetitive 5K that to date has raised more than $11 million to help St. Jude continue to fund operations and understand, treat and defeat childhood cancer and other deadly diseases.  Give Thanks Walk

Heroes Among Us: Mom Baked 96,000 Cookies to Raise Millions for Cancer Research highlights the efforts of Cookies for Kids' Cancer founder Gretchen Witt!!

CURE Childhood Cancer donated more than $2.5 million for research aimed at childhood cancer research and training pediatric. Thanks!  CURE Donation

Brian McCann is going to be a free agent this year (Yankees) and might be in a new city next season (New York)...but we bet he'll still be supporting out buds at the Rally Foundation for Childhood Cancer Research!!  Brian McCann goes to bat for cancer research with Rally Foundation

You know the saying: Whatever it takes!  Kilts for kids cancer: Two Portage men wearing kilts for a year to raise money to fight ch...

Toby Keith opens home for families battling childhood cancer.  OKLAHOMA CITY Okla. – It’s been 10 years in the making on Thursday, the Toby Keith Foundation opened its doors to the “Ok Kids Korral.” Thanks Toby Keith and the The Toby Keith Foundation!! Toby Keith talks about his OK Kids KorralThese guys are doing amazing things and are headed to the US!  Teenage Cancer Trust

Job well done by our buds at the Thumbs Up For Lane Goodwin Childhood Cancer Foundation and Live Like Bella for collaborating on a $180,000 grant to Doc Keller for innovative antibody research on rhabdomyosarcoma!  Lane Goodwin Foundation

"Legislation establishing the “New Jersey Pediatric Cancer Research Fund,” which allows taxpayers to make a voluntary contribution on their income tax return, was introduced by Assemblywoman Betty Lou DeCroce today."  DeCroce Introduces NJ Pediatric Cancer Research Fund Bill - Read more

A huge thanks to Jon Huntsman for a $50 million contribution to Huntsman Cancer Institute and rounding up Intermountain Healthcare, the Mormon Church, and the Utah state legislature for $50 million more! The funds will be for construction of a new research building for children’s cancer. Chemicals Billionaire Jon Huntsman Boosts Children's Cancer Research With $50 Million Donation

You remember Zach Sobiech and Clouds.... Zach Sobiech’s Family Donates $568K to University of Minnesota for Cancer Research  Family Donation

 

Research

The journal Science names cancer immunotherapy its "breakthrough of the year" for 2013. According the piece, immunotherapy has incredible potential but we still have a long way to go.  Cancer Immunotherapy 

Oncologists and researchers from the Cancer Center at CHOP presented updates on pediatric cancer research and treatment during a webcast on Oct. 1, 2013. Their experts reported on the latest developments in T cell therapy, brain tumor research, personalized therapy, treatment for the unique adolescent and young adult population and more. Watch a recording of the webcast in this video. Cancer summit-Making Strides                                                                                                                       

Genetically modifying immune cells to fight neuroblastoma cells could help fight childhood cancer, according to research presented at the National Cancer Research Institute (NCRI) Cancer Conference.  Redirecting our immune cells to help fight children's cancer

A new potential treatment from the UK for rhabdomyosarcomas?  Combination therapy could treat common children's cancer  Dual-Pronged Strategy

More news from the AACR Pediatric Cancer Working Group meetings in San Diego. A new genomic test can identify genetic alterations and thus the potential for targeted therapy. The test identified genomic alterations indicating a potential treatment option for 56 percent of the pediatric patients from whom the tumor samples were derived. Almost two-thirds of the alterations would not have been detected using available tumor type-specific tests.  Next-generation sequencing test identified potential targets for pediatric cancer treatments

First news we've seen from the AACR Pediatric Cancer Working Group meetings in San Diego this week. Phase 1 testing of eribulin showed promise with tests on mice, and now a Phase II trail will be coordinated with COG.  Eribulin shows early promise in pediatric sarcoma treatment

Good news!!! Children conceived using In Vitro Fertilisation (IVF) and similar techniques have no increased overall risk of cancer in childhood, according to a Cancer Research UK study published in The New England Journal of Medicine.  IVF conception not linked to increased childhood cancer risk

Findings suggest that a digital camera can not only alert parents that their child might have retinoblastoma, but it can also inform a doctor of its severity. Access to digital photography world wide may help survival rates by speeding diagnosis.  Baylor University and Harvard Medical School Researchers Help Make ...

"An eight-year-old girl, living near a major road in the Jiangsu Province of Eastern China, has become the youngest person in China, and possibly in the world, to be diagnosed with lung cancer caused by pollution—the cause of her disease according to Chinese officials."  A Chinese Child’s Lung Cancer Is Linked to Pollution

New laboratory studies of a genetic pathway reveal a potential breakthrough in the treatment of pediatric low-grade gliomas, which could offer more targeted treatment with fewer long-term late effects. The work was supported by the The Childhood Brain Tumor Foundation, the PLGA Foundation, the Pilocytic/Pilomyxoid Fund, the St. Baldrick's Foundation, the Knights Templar Eye Foundation and Ian's Friend Foundation.  Common Genetic Pathway Could Be Conduit to Pediatric Tumor Treatment

Last week we told you about the new drug shortage. Daunorubicin – a generic, sterile injectable chemotherapy drug that is essential therapy for children with leukemia – is in desperately short supply.  Teva Pharmaceuticals of North Wales, PA, is the sole distributor of daunorubicin to the U.S. market. They informed the FDA of the shortage and that full production is not expected to resume until sometime next year.  There is no indication on the FDA web site as to why the drug is in short supply or exactly when full production will resume.  New drug shortage threatens kids with cancer

"The hope is to improve the treatment for a devastating type of cancer, leptomeningeal metastases, which afflicts the lining of the brain and spinal cord. The device, when implanted in the abdomen, would send chemotherapy into the spinal fluid for direct delivery to the brain, a process infinitely easier for young patients who otherwise must endure uncomfortable spinal taps several times a week, and a hospital stay. The pump would send the correct amount of medicine where it is needed, and, just as important, would allow children to remain at home while they are undergoing treatment."  Safer, more convenient pump to treat pediatric brain cancer

"Researchers studying [DIPG] discovered that nearly 80 percent of the tumors have mutations in genes not previously tied to cancer. Early evidence suggests the alterations play a unique role in other aggressive pediatric brain tumors as well."  Clues to rare childhood brain tumor uncovered 

"CIVO is a technology platform, being developed by Presage Biosciences, that is designed to improve treatment decisions for cancer patients. The patented platform offers an entirely novel method for simultaneously analyzing multiple cancer drug candidates and drug combinations within a single tumor while that tumor is still in a patient. By employing this technology we can discern which drugs induce a localized anti-tumor response, which we believe will be predictive of therapeutic effect upon systemic administration of treatments."  Precision Oncology: Interview with Presage Biosciences Founder Dr. ...    

"The tumor regressions we are seeing across our Phase I trials at Memorial Sloan-Kettering, Fred Hutch, and Seattle Children’s Research Institute are unprecedented," added Michael Jensen, M.D., one of Juno's scientific co-founders and director of the Ben Towne Center for Childhood Cancer Research at the Seattle Children’s Research Institute. "I believe this is a transformative therapeutic platform for patients young and old that has the potential to save lives."  Fred Hutchinson, Memorial Sloan-Kettering Co-Launch $120M Cancer-Ba... 

"A long-awaited study by the U.S. Centers for Disease Control and Prevention shows a link between tainted tap water at a U.S. Marine Corps base in North Carolina and increased risk of serious birth defects and childhood cancers.  Tainted drinking water at Camp Lejeune 

"In one of the biggest advances against leukemia and other blood cancers in many years, doctors are reporting unprecedented success by using gene therapy to transform patients’ blood cells into soldiers that seek and destroy cancer”   Gene therapy is the new front in the war on cancer 

Good news on ETMR/ETNTR.  Groundbreaking discovery in deadly childhood cancer 

Small steps sometime mean so much. Less pain is always good.  Less painful drug delivery for pediatric leukemia patients is safe,... 

Should be titled: "Despite Major Progress From the 1950s, All Childhood Cancers Are Still Killers"  Despite Major Progress, Some Childhood Cancers Are Still Killers

Drugs that enhance a process called oxidative stress were found to kill rhabdomyosarcoma tumor cells growing in the laboratory and possibly bolstered the effectiveness of chemotherapy against this aggressive tumor of muscle and other soft tissue.  Gene Sequencing Project Finds Family of Drugs with Promise for Trea... 

Training and following safe practices is crucial to avoiding central line infections.  Infection Rates Lower In Ambulatory Pediatric Oncology Patients After Central Line Safety Intervention

"Scientists have discovered an enzyme in the 'developmental pathway' of patients with embryonal tumors within multilayers rosettes - an uncommon but deadly childhood brain cancer - which they say may lead to more effective treatment of the disease."  'Breakthrough' may lead to new treatment for fatal childhood cancer 

Without further information "clinicians frequently base decisions about pediatric melanoma on data from adult patients, even though there are considerable differences between the two populations."  Registry offers insights into pediatric melanoma outcomes 

"Remedy Informatics, the leading provider of registry-based clinical informatics software for healthcare delivery and life sciences research, announced that it will partner with researchers at the Nemours Center for Cancer and Blood Disorders at the Alfred I. duPont Hospital for Children to build the first-ever oncology registry designed specifically for pediatric cancer research."  Remedy Informatics to Partner with Nemours Center for Cancer and Bl... 

The Mary Crowley Cancer Research Centers has received $500,000 to support a pediatric cancer research initiative and advance treatment options for children and young adults through ongoing clinical trials and preclinical research.  The open clinical trial for Ewing’s sarcoma, a common type of bone tumor in kids, is testing an immunotherapy, or cancer vaccine, that was previously tested in adults.  Texas Motor Speedway Charities gives $500,000 to cancer research ce... 

Doctors in Singapore have uncovered a genetic key which unlocks the survival chances of childhood leukaemia patients.  A team from the National University Health System identified the gene - microRNA 335 - which is expressed in much lower levels in patients with a poor prognosis. It controls other chemical reactions, which then affect whether patients will benefit from prednisolone - a key chemotherapy drug.  S'pore doctors make vital discovery on child cancer 

"But if you understand that this is a game of probability, and there is only a finite number of cancer cells and each has only a certain chance of mutating, and if we can put together two or three independent attacks on the cancer cell, we win."  When Will Genomics Cure Cancer? 

"We found that a region of DNA near the TERT gene was hypermethylated in 100 percent of the malignant pediatric cancer tissues expressing TERT that we examined and unmethylated in normal tissues and in low-grade tumors lacking TERT. Although these results are restricted to pediatric cancers, we believe that this hypermethylation signature could be a pancancer biomarker because TERT levels are elevated in almost every cancer cell."  Biomarker may help predict aggressive cancers

Long-Term Effects

We disagree. We won't take those 80% odds.  Shaun White and Friends Video 

There's got to be something they aren't at risk of....  Childhood HSCT increased risk for kidney stones 

We've got to cure childhood cancer... Suicide risk higher in youths with cancer diagnosis

It's not just LONG term effects. "Researcher has shown childhood cancer survivors face heart and other health problems decades after treatment, but researchers had not until now looked at the heart health effects of childhood cancer treatment while survivors are still children." Researchers found that childhood leukemia survivors showed 9% decline in arterial health after completing treatment as compared to children who didn’t have cancer.  Childhood Cancer Treatment Takes Toll On Hearts of Survivors

"The study showed that young adult childhood cancer survivors may be aging faster than their peers with no history of cancer."  The Aging of Childhood Cancer Survivors

"Kids who survive cancer often have lifelong consequences of it; one in three childhood cancer survivors do not live a normal life expectancy. Chronic heart, lung, kidney, developmental, neuro-cognitive and/or other conditions occur as a complication of their disease or its treatment in up to three quarters of patients, with over a third of these being severe. For the quarter of a million people in the U.S. today who are survivors of pediatric cancer this is a huge issue."  Dr. Jeff Hersh: 'Batkid' and other children need a fighting chance

Survival is not enough. Recent data on at least 10-year survivors (avg age 33) shows survivors of childhood ALL experience persistent and significant neurocognitive impairment into adulthood.   Survivors of childhood ALL need continued support for neurocognitiv... 

"Researchers are grappling with the cause of the premature aging. They have focused on the treatment the survivors received at a time when their brains and other organs were developing.  Childhood Cancer's New Conundrum 

Golisano’s pediatric cancer program is now entering its 17th year, meaning most of its survivors have entered adulthood. The hospital, among the first in Florida to begin long-term tracking of these former patients, is now following about 250 of them [childhood cancer survivors].  Children's Hospital tries to fill medical void for patients when th... 

"Some of the strategies and insights gained from this body of research are already visible in most children’s hospitals: a place for parents to sleep, even in the intensive care unit; including parents in so-called family-centered rounds; a staff attuned to interpret a parent’s extreme behavior as a cry for help, rather than a source of irritation and extra work.  Haunted by a Child’s Illness 

Stories and Writings

boy do we get this....  Family Guy, Brian Griffin and the Childhood Cancer Equation 

this happens way too many times every day in the #childhoodcancer world.    Police Funeral Given To Ridgewood Boy Who Died Of Cancer 

Don't ever think our kids won't be remembered....Letter at Jessica’s grave photo 

Cancer kids are the most giving, thoughtful, kind, brave, loving, insightful, compassionate, (add your own) _______ people on the planet. Carson: ‘Momma, make sure they study those tumors, if those tumors can help some kid not die from cancer like I am, I’d like that; it’s hard to have cancer.’  MySweetWishList: The Carson Leslie Foundation 

“you have to sit your 8-year-old down and tell him he's going to die"  Superman Sam, Super Hero, Dies at 8.  Leukemia 18 month Fight 

From Erin Santos at The Isabella Santos Foundation:  11 Things Raising a Terminally-Ill Child Taught Me About Parenting 

Here's the story of Joshua and Sara Bareilles performing a chorus of 'Brave.' The video is is the comment section.  Watch Sara Bareilles perform 'Brave' with pediatric cancer patient ... 

Another tender yet potent story of a family's love and loss.  Kyla Rae's Story: When Hope Was Lost 

Is social media making us more empathetic?  Superman Sam & The Power of Social Media  

"Since [Johanna] Joyce published her groundbreaking study, countless people have contacted her about enrolling in clinical trials — many of them young adults and parents of children with glioblastoma."  Johanna Joyce, Cancer Warrior     

Friday Batkid ruled in SF.  Batkid ready to save San Francisco from villains for Make-a-Wish dream

Living the Dream  Will’s Dad…Blog

"With a team of helpers in place, Arguez and her coworkers had one week to plan the event. In that time, calls were made, donations were secured, and the event came together seamlessly. Every aspect of the Oct. 22 wedding — from Olivera’s dress to the couple’s wedding rings to the pink, flowered cake and chocolate fountain that Miranda chose herself — was donated by local businesses." 9-year-old cancer patient's dream comes true: She sees her parents ...

Childhood Cancer Parents: "everyday people doing extraordinary things to help others"  Profiles in Courage - Childhood Cancer Parents

"I am not asking to be seen as the Sick Kid. I am living with no regrets."

It happens every single day in this community, the kids just blow you away: When diagnosed with cancer 10 year old Weiland said: "I was kind of nervous when I found out, but I gave my dad a hug and told him it would be o.k.” #screwburkitts    Local ‘warrior’ battles on and off the field

our friend Jonathan weighs in on the govt shutdown and the stuff coming out of the politician's mouths during  The Exploitation of Childhood Cancer and the Government Shutdown

"I believe that as moms, we all have that intrinsic desire to make things better for our kids. And when we work together to make a difference, nothing can stop us."  Mama Lionesses Unite!

Via John Bennett - "Hate brain cancer in kids, love the human spirit that randomly shows itself every once in a while...."  Ohio boy who came home for early Christmas dies

Awareness

Jimmy Kimmel talked about his support of ALSF and the annual LA Loves Alex's Lemonade event in the most recent issue of Variety Magazine!

As if awareness of the reality isn't hard enough to get celebrities or media to listen to, a hoax with a child dying of cancer.  Brad Paisley and Wife, 'Nashville's' Kimberly Williams-Paisley, Come Forward as Victims of Dying Daughter Hoax

Cool stuff from UDance (University of Delaware) HUGE supporters of our buds at The Andrew McDonough B+ Foundation!!  90's Themed Flash Mob At University Of Delaware Promotes Awareness For Pediatric Cancer (VIDEO)

Smashing Walnuts bringing  the Washington Redskin’s into the fight.  The Redskins take a stand against childhood cancer. 

On Wednesday, University Hospitals Rainbow Babies & Children’s Hospital will serve as the host center of the annual three-day conference of Critical Mass. Started in 2006 by the Lance Armstrong Foundation as the Livestrong Young Adult Alliance, the group – now an entity separate from the foundation -- serves as a coalition of dozens of organizations around the country that focuses on the needs of adolescent and young adult cancer patients.  Pediatric and AYA cancers to be the focus of conferences this week ...

"Simon Paluck will always look back fondly on a friendship that opened his eyes to a whole new world. . . .His forthcoming film, ‘Emma’, serves as an homage to that friend while highlighting that a diagnosis does not necessarily mean it’s impossible to enjoy life. . . . One of the things he learned was that childhood cancer does not equate to isolation. He noted his friend had connected with others who were going through similar ordeals both close to home and well outside the city."  Filmmaker Inspired

The Max Cure Foundation will take over the giant display window at 10 Rockefeller on The Today Show Plaza just steps away from the Rockefeller Center Christmas Tree. This opportunity to highlight Max Cure and its mission to advance the fight against pediatric cancer was made possible by EHE International.  The Max Cure Foundation and EHE International Inspire Holiday Spiri... 

Gage Bryce, clad in a U-M football jersey, ran the football through the Marching Band during the Michigan/Ohio State football game on Saturday, then struck a Heisman pose at the end. "Gage and his family, who are from Saginaw, Mich., have been advocates in Mott’s efforts to promote awareness about the funding need for research into childhood cancer through the “Block Out Cancer” initiative.  C.S. Mott Children’s Hospital patient joins Michigan Marching Band ...   

Honoring Zach Sobiech!  Thousands Gather to Honor a Boy Who Died From Cancer by Singing His Song.  Zach’s Video Song 

Justin Bieber took time out on Tuesday to remember Jake Schafer, a young fan who he learned had passed away that morning at the age of 10 from neuroblastoma - Bieber Heartfelt Tribute

Education

Children’s Cause for Cancer Advocacy takes a look at apps that can help during and after treatment. Do you use an app?  mHealth: Smart apps for smarter care? 

Know a child who needs a little help gobbling up those hospital fears? Medi-Monsters has just the gift for your little warrior. Provided free to cancer fighting children and chronically ill children. Soft, cuddly fleece!   http://www.medi-monsters.com/        

A quick reminder: online scholarship applications for Pediatric Brain Tumor Foundation are open. The deadline to submit an application is March 15, 2014. If you have time in the lull between Christmas and New Year's take a moment to complete your application. . . or at least get started.  Scholarships 

The Pablove Foundation Shutterbugs program teaches children and teens living with cancer to develop their creative voice through the art of photography. Currently, they offer an 8-week long course in photography to pediatric oncology patients ages 6-18. They provide all of the necessary camera equipment and materials for their students, and offer the program free of cost to families.  Gift of Photography

*PTSD in Parents* Katie Bigalke, a counseling psychology doctoral student at The University of Southern Mississippi, is requesting the participation of parents (mothers and fathers) of children in active cancer treatment to complete the following study. The purpose of this research is to gain a better understanding of factors that may influence the stress that parents of children with cancer experience.  USM Parenting Survey

You can watch and participate in free webinars from Children's Hospital of Philadelphia  at   Recent webinars include Resources for Families Affected by Childhood Cancer and Dealing With the Challenges of Childhood Cancer and Treatment.  The next webinar will be about parenting a teen with cancer and you can register here.

Advocacy

Via our buds at Children's Cause for Cancer Advocacy, news that the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act is now at 31 co-sponsors! Thanks to Rep. Carolyn McCarthy (NY-4) Congressman Dan Lipinski (IL-3), Rep Rep Tim Walberg (MI-7), and Representative Sean Patrick Maloney (NY-18) for becoming the newest co-sponsors!  Carolyn Pryce Walker Reauthorization Act

Our buds at Children's Cause for Cancer Advocacy latest blog about the Institute of Medicine's findings that adolescents and young adults need access to services targeted to their specific age group and stages in life. Click below to read more and support the Childhood Cancer Survivors’ Quality of Life Act now pending before Congress, which would take many steps towards improving care for childhood and adolescent cancer survivors.  Quality of Life Act

In November, the childhood cancer community came together to promote TheTruth365's short video The Truth 365: A National Priority. As a results of the video, The Truth 365 was contacted by Eric Cantor (R-VA).  The Truth 365 is non-partisan and supports any legislation that has the potential to help children with cancer.  The Gabriella Miller Kids First Research Act passed the House of Representatives with bipartisan support.  One Step Forward! Thank you for helping make it happen  Gabriella's Dad - "But they're talking about it," he told CNN. "They're talking about the lack of funding for pediatric disease research, pediatric cancer research (and) brain cancer research like Gabriella had."  Will Congress carry on Gabriella's fight? 

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Outstanding reflections by three strong leaders and fantastic job of organizing and presenting the PAC2 posts.

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