PAC2 Update – May 2014


May 1

Wear Grey. May is Brain Cancer Awareness Month.  We have lost so many kiddos to this dreadful disease! Show your supports sharing this photo!  WEAR GRAY 

All are welcome to join this afternoon's National Cancer Institute teleconference about the new clinical trials system, including a discussion of the National Clinical Trials Network (NCTN) and the NCI Community Oncology Research Program (NCORP).  Teleconference starts at 3pm EST today, May 1. 

May 2

The list of impacts goes up by another one.  CHILDHOOD cancer treatments such as chemotherapy and radiation therapy may have long-term negative impacts on taste and smell function, new research suggests.  Taste & Smell Impacted 

There's an app for that!  Designing an App to Help Childhood Cancer Survivors Keep Up with Fitness Goals.   Rutgers Cancer Institute of New Jersey scientist receives funding to design intervention tailored to needs of young adults.  New App 

Why would our kids have to sell homemade cards while mom shaves her head to raise money for lifesaving research?  Great story and all the more power to Aubrey! 

Thriving in School after Treatment: Learning, Socializing and School  The Cancer Center at The Children's Hospital of Philadelphia.  Tuesday, May 6, 2014 from 7:00 PM to 8:00 PM (EDT)  Webinar For Parents and Caregivers

Grant funds research into connection between birth defects, childhood cancer.   Baylor College of Medicine and Alex's Lemonade Stand Foundation!  Dr. Philip Lupo of Baylor College of Medicine has been awarded an Epidemiology Grant from Alex’s Lemonade Stand Foundation for his research that explores the intersection between childhood cancer and birth defects. 

The researchers found that while only about four per cent of participants had a smell dysfunction, 27.5 per cent suffered a taste dysfunction, almost three times the rate found in a 2011 study of healthy Australian children.   Senses’ Dysfunction

May 4

Larry the Cable Guy Raises Money for Pediatric Brain Cancer.   Way to go Team Jack!  Larry the Cable Guy & Jeff Foxworthy raised $200,000.  Research funds

"The Holy Grail of childhood cancer therapy is a medicine that is effective against the cancer, but doesn't leave the sort of damage that the child then has to deal with for the rest of his or her life," Novogen CEO, Dr. Graham Kelly, said.  CODA Formed 

May 5

In case you didn't see it yesterday.... Fast-tracking new treatment for childhood cancer.  Children fighting a life-threatening form of cancer could be treated with a revolutionary anti-cancer therapy as early as next year, following the formation of a research alliance to fast-track development of a medicine pioneered by Australian researchers.  Non-Invasive Treatment 

So many parents contact us and ask us to share the reality of childhood remind people that it is not just about smiling bald children who look happy in every photo.  We understand that the reality is sometimes MUCH, MUCH worse than this photo. The reality of a lot of these children and families involves tiny coffins and choosing headstones.  Photo 

Some moments are so significant the weight of them seems to hang in the air. I experienced this first-hand when cancer survivor Milton Wright III met the people who helped save his young life.  “I would not be here without them” 

"Surely you know how it feels to face death and to be given a second chance."  I am a cancer survivor of 19 years. I want to share my story with people and hear their stories. Below is a glimpse into my story that I wrote a couple of years ago. I hope that by sharing my story I give someone else struggling with cancer the hope that they've been missing.  Survivor Story    

More research collaboration!! "The New York Genome Center (NYGC) and The Sohn Conference Foundation announced today the launch of The Sohn Collaborative for Pediatric Cancer Research, a multi-institutional effort with the goal of fighting two devastating childhood cancers: pediatric leukemia and neuroblastoma. This collaboration draws together some of New York City's leading medical research organizations to advance the clinical understanding of these cancers."  Collaboration NYGC 

May 6

A child who was treated for tumors of the brain or central nervous system or who has NF, or any child who has had neuro-surgery, received cranial or focal radiation therapy or received intrathecal chemotherapy treatment could be at risk for or suffering from neurocognitive effects from their disease or treatment.  Thriving in School after Treatment: Learning, Socializing and School-Free Webinar-May 6, 2014 

Children with Down syndrome are at 20 times the normal risk for developing ALL.  Dana-Farber researchers uncover link between Down syndrome and leukemia.  Researchers track the genetic chain of events that links a chromosomal abnormality in Down syndrome to the cellular havoc that occurs in ALL.  Higher Risks 

Pulling teens out of the no man's land between children's and adults' cancers.  More U.S. hospitals are creating special units for teens with cancer, drawing on a model from the U.K.'s Teenage Cancer Trust.  New Approach to Teen Cancer 

May 7

Hey Georgians! Here's an invitation for "American Medical Progress: A Conversation with Candidates"  This is a nonpartisan meet-and-greet with Georgia candidates for the U.S. Senate and a chance to discuss childhood cancer issues with the candidates.  Friday, May 9, 201,  12:00pm-1:30pm 

Today Show tells Ty Louis Campbell story!  Parents who lost son to cancer urge others to enjoy every moment - Moms -   In case you missed it, watch here! We love Kathie Lee and Hoda! Thanks for helping us raise #childhoodcancerawareness

The talent and ideas exist, but we’re risking it all by not providing the funding. “We are at risk of losing something that has been one of America’s greatest stories – our success in biomedical research.”  Congress Takes Action: Forging a #Path2Cures 

In one month, on June 7, one lucky ALSF supporter will win a brand new Volvo XC60 courtesy of ALSF founding sponsor Volvo Cars US!   Win a brand new Volvo! 

May 8

Bryan Shaw believes parents' cameras can reveal whether their baby has leukocoria, the so-called white eye which can be an early sign of retinoblastoma, a form of eye cancer.  Chemist Turns Software Developer After Son's Cancer Diagnosis 

The National Cancer Institute grants $824k to Rutgers to develop an app to promote physical activity in childhood cancer survivors.  Exploring a mobile app to promote physical activity for childhood cancer survivors.  Grant For App 

Youth Art Auction and Performance to benefit childhood cancer research. Pretty cool!  A Fantastic Evening of Youth Talent to benefit childhood cancer research.  Art Event for a Cure


Good Friends! Take that back. Great Friends!  PROM MASK-QUERADE: A Virginia high school student and cancer patient wanted to go to his girlfriend's prom, but his doctor said he would have to wear a mask to protect himself from getting sick.  Heart Warming Friends Photo 

Johnny Football is one of Charlie's Angels.  Manziel invites 6-year-old fan to NFL Draft.  Johnny Football has a lot of fans, but you’d be hard pressed to find one bigger than 6-year-old Charlie Dina.  Very Special 2 year friendship 

May 9

Free e-book for neuroblastoma families! We all need to learn to dance in the rain.  Welcome to the Facebook discussion page for the book “Learning to Dance in the Rain: A Parent’s Guide to Neuroblastoma Diagnosis, Treatment and Beyond”. This Facebook page is for you, the parent or caregiver of a child with neuroblastoma.  E-BOOK 

The results prompted St. Jude to expand clinical trials of the monoclonal antibody hu14.18K322A to include patients newly diagnosed with neuroblastoma. Monoclonal antibodies are engineered in the laboratory to recognize and attach to specific markers carried on the cell surface."  Antibody Gets Expanded Trials 

May 12

On an average Mother's Day 44 children are diagnosed with childhood cancer.  Mother's Day in the Children's Oncology Ward.  A mother’s story about her child being diagnosed with Childhood cancer and the nightmare that threw them into the fight of their life.  Mother’s Day Personal Story 

An open, community-wide awareness event September 21, 2014 in Washington, DC. Planning is underway. "Like" CureFest for Childhood Cancer 

"We are now working to understand how this newly recognized source of DNA damage might contribute to tumor development or the age-related DNA damage in the brain that is associated with neurodegenerative disorders like Alzheimer's disease"  DNA Repair Problem 

he long-held but erroneous assumption of never-ending rapid growth in biomedical science has created an unsustainable hypercompetitive system that is discouraging even the most outstanding prospective students from entering our profession and making it difficult for seasoned investigators to produce their best work.  Rescuing US Biomedical Research 

HUGE congrats to our buddy Jeff Gordon and his team at Jeff Gordon Children's Foundation!!  Jeff Gordon held off Kevin Harvick to pick up the victory at Kansas.  Congrats to Gordon

These Stunning Photos Show The Strength And Beauty Of Children Battling Cancer.  At the time these children are photographed, they are quite literally fighting the battle of their young lives. And that's exactly why the images taken of pediatric cancer patients and their families for the Flashes of Hope project are so evocative.  Flashes of Hope Cancer Photos 

To almost anyone who’s cared for a child with cancer, it seems obvious: Sometimes the best medicine isn’t a drug, it’s a dog — four paws and a furry tail — that can make a kid feel better.   Puppy Love: Study Tests Power of Dogs Against Cancer 

Registration for Childhood Cancer Action Days has been expanded!!  Once again, the Alliance for Childhood Cancer will host a two-day event that includes issues and advocacy training, and pre-arranged Capitol Hill visits with Congressional Representatives and their staff.  Action 

May 13

Thank you to Jeff Towne & Ben Towne Foundation and RPM Mortgage, Inc..   100% of donations to the Ben Towne Foundation support innovative research at the Seattle Children's Research Institute aiming to cure childhood cancer.  Community generosity helping to cure childhood cancer  

These words are not even in our kids' vocabulary.  Childhood cancer survivor Julia Jones will be joining us as a guest blogger this month as part of a project to earn college course credit.  “There and Back Again: My Survival” – Blog by Julia Jones 

For the Pediatric Dream Team.  For every Baton Pass, including each Like of The Baton Pass page, Siemens will donate $1 to Stand Up To Cancer through September 5, up to $1 million.  The Baton Pass 

DC Friends, Reach out to DC Candlelighters if you want to try to catch this screening.  The Fault In Our Stars | Official Trailer [HD] | 20th Century FOX   Video Trailer-YouTube 

May 15

It's time.  We’ve written all about statistics, and made logical yet heartfelt cases for increased funding for childhood cancer research.   But really, it’s simple.  They are kids and we’re supposed to protect them.   PAC2 Commentary

May 16

This June, Alex’s Lemonade Stand celebrates 10 years since founder Alexandra “Alex” Scott set a mission to raise $1 million for childhood cancer research – one cup at a time

Dick Vitale targets $2 million goal for annual gala to battle pediatric cancer.  Dick Vitale spent Monday inflating basketballs he will ask his celebrity guests to sign, hoping to turn their signatures into dollars.  Thank You Dick Vitale! 

Sammy Hagar, Metallica's James Hetfield and other talented friends will perform an acoustic benefit concert in support of the Pediatric Cancer Program at UCSF Benioff Children's Hospital.  The first annual Acoustic-4-A-Cure concert is set for May 15 at the Fillmore in San Francisco. 

“We want to raise money for pediatric cancer, we wanted to create a really cool mash up music video…And Cyndi Lauper has ‘True Colors,’ so Sara and Cyndi are going to make a mash up video, involve kids, and have a concert on the.  Music Team-Up for Pediatric Cancer Awareness 

...bit of a rant from a childhood cancer survivor in South Africa.  While I agree that HIV/AIDS is a terrible disease, I am really so frigging sick and tired of the fact that it seems to be the ONLY disease on which our current government is concentrating.  Tired of HIV/Aids Thing! 

“Increases in mortality appear to be more pronounced in patients with sarcomas that require aggressive treatment,” the researchers concluded.  Survivors of AYA bone, soft tissue sarcoma at risk for long-term mortality.  New Study Report 

Step by step by step to better treatments -- “After 3 years of extensive research and validation efforts, we were able to produce a treatment planning algorithm that enabled us to investigate the possibilities for using helium ion therapy in children treated with low-dose radiation,” Fuchs said.  Helium ion radiotherapy benefited pediatric patients 

If you're a ped-onc doc, or a parent digging in, HemOnc Today offers a brief review of the most recently published studies that could impact your approach to the treatment and management of pediatric cancer patients.  9 Studies might Change Your Approach! 

Here's something we didn't know, Neil Armstrong's daughter Muffy was taken by childhood cancer at age 3.  Neil Armstrong: The Inspiring Legacy of ‘Muffy’ 

Artificial tanning use is prevalent among adolescent girls and likely contributes to the growing incidence of melanoma in this group.  Childhood melanoma: an increasingly important health problem in the USA.  Childhood Melanoma 

May 17

CureFest! Let them know you are coming! E-mail the name at Please include the official name of the organization and its state so that we are sure that we have the right one.  TheTruth365 Photo 

May 19

For the kids.  The hemoncology floor of Seattle Children's Hospital performs Kelly Clarkson's song "Stronger" NEW! Check Out the YouTube Video

 For the kids.  We’ve written all about statistics, and made logical yet heartfelt cases for increased funding for childhood cancer research.   But really, it’s simple: They are kids and we’re supposed to protect them

May 21

The Children's Cause for Cancer Advocacy is hosting a childhood cancer advocacy workshop for North Carolina families and those in the surrounding area.  Date: Saturday, June 7th  Time: 8:30am – 4:30pm.  Advocacy Workshop-Champions for Children with Cancer 

May 22

So. What do you think PAC2? Did the three main cases in "Fault in Our Stars" seem unlikely to you to find in a teen cancer support group?  Cancer Stories in “Fault in Our Stars” Highly Unlikely, Pediatric Oncologist Says…In Real Life, Most Kids Have Better Outcomes.  Novel by John Green 

May 23

"For 80 years, it hasn't been clear why children with Down syndrome face a sharply elevated risk of ALL," said the study's lead author, Andrew Lane, MD, PhD, of Dana-Farber Cancer Institute in Boston, Massachusetts. "Advances in technology, which make it possible to study blood cells and leukemias that model Down syndrome in the laboratory, have enabled us to make that link."  Link between Down syndrome and leukemia discovered 

May 28

Teen Ink author Narrelle - "I am a survivor of retinoblastoma, a rare childhood cancer, so I have a strong personal connection to this piece about a child dying of leukemia. I dedicate this article to all of the children and their families who are living this story."  I Know Why the Birds Soar 

The Coalition Against Childhood Cancer (CAC2) = Over 60 member organizations including Flashes of Hope, Solving Kids' Cancer, I BACK JACK FOUNDATION, Noah's Light Foundation, TheTruth365, Max's Ring of Fire, Jeff Gordon Children's Foundation, KIDS V CANCER, Alex's Lemonade Stand Foundation, Bear Necessities Pediatric Cancer Foundation, People Against Childhood Cancer (PAC2) and many more banding together to fight childhood cancer.  CAC2

Andrew McDonough Cup to the U14 Boys Champions at the FC Delco Players Cup. In honor of Andrew and The Andrew McDonough B+ Foundation.  ach year, we proudly present the Andrew McDonough Cup to the U14 Boys Champions at the FC Delco Players Cup, a tournament drawing 700 teams from across North America.  McDonough Cup Honors Andrew 

May 29

We want our legislators to recognize that childhood cancer goes beyond statistics by showing them the faces of our children. Our children are more than just the cancer they experience.  Childhood Cancer Faces of Childhood Cancer Project 

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