PAC2 NEWS

 MARCH 2014

March 2

Neuroblastoma--"A promising type of therapy called differentiation therapy targets these malignant cells so that they can resume the process of differentiating into mature cells."  Improved screening means new targets for pediatric neuroblastoma therapies   New Therapy 

"The Nashville Predators Foundation is proud to announce the renaming of the Nashville Predators Pediatric Cancer Research Fund at Monroe Carell Jr. Children’s Hospital at Vanderbilt to the 365 Pediatric Cancer Fund.  Shea Weber and Pekka Rinne Partner to Form 365 Pediatric Cancer Fund 

March 3

Childhood cancer survivors have nearly a 5-fold increase in the risk of developing an endocrine disorder in later life that often requires hospitalization, according to a large population-based cohort study of 5 Nordic countries.  High Risk for Endocrinopathies in Childhood Cancer Survivors 

Here's a rosy picture....we've asked for some clarifications.  Working with adult survivors of childhood cancers  Since the early 1980s, treatment success rates have skyrocketed. Only about 20 percent of childhood cancer patients survived then; today, 80 percent live into adulthood. But many of those adults suffer health consequences from their earlier care.  Adult Survivors 

March 4

Rainbow Loom Madness and Max Love!  Seven Year Old Max Helping Kids Fight Cancer.  Jimmy Kimmel noticed that a lot of kids are really into Rainbow Loom, so he asked parents to have their children loom something for him.  Max Loom Project Video

Several other families whose children have struggled with cancer were also at B.C.'s legislature Monday appealing for the creation of a specialized treatment centre to help childhood cancer patients once they reach adult age.  B.C. childhood cancer survivors call for specialized treatment centre 

"Toyota Corp.’s Lexus is teaming up with volunteer-driven charity St. Baldrick’s Foundation to raise awareness of children’s cancer leading up to St. Patrick’s Day with a contest that promotes solidarity."  Lexus joins the fight against childhood cancer via bold IS campaign 

March 5

"Sometimes kids get sick and their hair falls out." This 3-year-old has a solution.  Little Emily is not your typical child. She decided to cut her golden brown locks by the age of three and give it to kids with cancer who have lost their hair.  3-Year Old Donates Hair for Wig 

Sigma Phi Epsilon partners with St. Baldrick's Foundation for the seventh year--and are approaching a quarter of a million dollars in donations!  This article comes from The USA TODAY College Contributor network. Published March 2nd, 2014.  Fraternity Shaves Heads For Childhood Cancer 

Our friends at Thumbs Up For Lane Goodwin Childhood Cancer Foundation honored and granted $40,000! Congrats and thanks!!  Lane’s mom, Angie Goodwin of Calhoun, just won the grand prize 2014 Rare Life Award, given by Eagle Rare.  Eagle Rare will now donate $40,000 to the Thumbs Up for Lane Goodwin Childhood Cancer Foundation 

 "National Brain Tumor Society, the largest nonprofit dedicated to the brain tumor community in the United States, today announced the launch of Project Impact: Driving Discovery to a Cure for Pediatric Brain Tumors, an integrated research and drug development program that seeks to confront the unique barriers to better treatments for children with pediatric brain cancer."  NBTS New Initiative

March 6

Attendees at the recent NCI meeting to help drug development for childhood cancer include The EVAN Foundation, KIDS V CANCER, CureSearch, Coalition Against Childhood Cancer, Children's Cause for Cancer Advocacy, American Childhood Cancer Organization, Max Cure Foundation, St. Baldrick's Foundation and others.  NIH VideoCast

Taylor Swift makes donation to the The V Foundation for Cancer Research for song written for Rockstar Ronan and The Ronan Thompson Foundation! “Taylor Swift, through her song “Ronan,” has captured the heartbreak of childhood cancers,” said Susan Braun, CEO of The V Foundation.  $100,000 Donation from Sales of Taylor Swift’s Single “Ronan.”  Donations to Benefit Pediatric Cancer Research in Honor of Song’s Namesake 

Children's Oncology Group head Dr. Peter Adamson to United States Congress: "I realize passing legislation is difficult and complex. But it is no more difficult and complex than what children with cancer face every day."  Are your Senators on this Map? 

Register today for this free webinar brought to you by Arms Wide Open Childhood Cancer Foundation and Children's Hospital of Philadelphia:  Supporting Siblings After Losing a Child to Cancer.   Webinar Registration 

"Buried within the draft tax reform proposal released last Wednesday by House Ways & Means Committee leadership is a proposal to eliminate incentives for drug manufacturers to develop therapies to treat and cure the more than 7,000 rare diseases afflicting more than 30 million Americans."  Tax code overhaul prioritizes government savings over saving lives 

eBay will donate $1 to MaxLove Project for every share. PAC2 has nearly 13,000 fans. 13,000 x $1 = $13,000 to childhood cancer. PLEASE SHARE! Thanks, and thanks eBay!  MaxLove Project 

This young woman, Elana Simon, had a childhood cancer at age 12 and has actually done scientific work (at age 18) to isolate the genetic cause of her tumor.  Elana Simon And the Fibrolamellar Chimera   Utube Video 

                                                                                                                                                        March 7

Chances of having a boy - ½  Chances of having 4 boys in a row - 1/16  Chances of spontaneous identical triplets - 1/1,000,000  Chances of triplets having retinoblastoma - unheard of....  Except it happened.  The Low Family 

The University of Notre Dame is joining B+'s fight against childhood cancer! Tuesday, Joe McDonough shared Andrew's Story and the B+ Message with Notre Dame students in Breen Phillips Hall, Stanford Hall, Knott Hall, Duncan Hall and Ryan Hall.  Notre Dame is hosting the Notre Dame Gentlemen Auction.  Timeline Photo 

March 8

Please keep tweeting for Josh at #savejosh.  Chimerix has a drug but wants to save its inventory for its clinical trial rather than using it to save seven-year-old Josh's life.  Op-Ed: Drug company responds to Josh Hardy's case with a 'no.  Fight for Life 

The Boeheim Foundation made a $100,000 contribution to support two studies at Upstate Medical.  One will investigate new treatment options for children with osteosarcoma and Ewing sarcoma, two bone cancers that occur mainly in adolescents, according to Upstate Medical.  The other study will look at ways to reduce the adverse effects of radiation treatments for childhood cancer on bone growth and development.  Two-Study Research Donation

March 9

Almost time! Tune in to CNN tonight at 7pm ET the story of Josh Hardy and #savejosh.   Save Josh 

Sorry about the low volume/video quality. The message is the same. It will be a personal family and a national tragedy if Josh doesn't get the drugs. We wish you all the best. #healthcare #childhoodcancersucks   Video Post to several Timelines by PAC2

Thanks CNN. #savejoshhardy Josh beat kidney cancer. Survived a BMT. St. Jude Children's Research Hospital says he needs a drug from Chimerix but they won't give it to him because there are financial implications and they want to save inventory for their trials!! Tweet/share please

"It's just unimaginable that they have what we need [to save our child's life] and they won't give it to us...." #childhoodcancersucks  (shared with NBC and Dick Vitale)  CNN Video-Mom’s desperate Plea

March 10

Will Chimerix #SaveJosh if they get a $50,000 check? Is that the price tag for Josh’s life? We don’t know but we are sure going to try.  Donate here: http://maxcurefoundation.org/   We have set up a donation form specifically to #SaveJosh. 100% of donations made on this page will go to the #SaveJosh Fund.

                                                                                                                                                                                

Can you help?   Posts to Chris Van Hollen’s Timeline by PAC2.  Save Josh-CNN Video 

This story should terrify every parent in the world.....For the past few days we've been telling you about Josh Hardy. Josh has fought childhood cancer and came out NED four times. Side effects from the treatment resulted in a BMT which leads to weakened immune system which leads to Josh contracting a virus. St. Jude Children's Research Hospital wrote to the drug company Chimerix asking for the drug. Chimerix basically says no, we need it for inventory for our trials and we have limited resources.  Savejosh Timeline

Meanwhile..... Rise in childhood cancer in Fukushima sparks debate.   Three years after the worst nuclear accident in a generation, the Japanese prefecture is reporting a rise in the number of children showing cancer symptoms.  Childhood Thyroid Cancer Increase 

Chimerix got over $72 million in Federal funding yet refuses to give a lifesaving drug to Josh. Thanks Fox News. #sowrong #savejosh. Chimerix - Mr. Ken Moch 919-806-1074, Emails can be sent to compassionateuserrequest@chimrix.com                Video on Chimerix Not Doing Compassionate Use

March 11

Josh will get his potentially life saving drug tomorrow! Congratulations to the childhood cancer community for extraordinary efforts over the past few days..... #savejosh   Thank Yous 

Yep... "Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has."-Margaret Mead   Kids v Cancer 

March 12

The Gabriella Miller Kids First Act: Another example of progress as the community bands together and fights against childhood cancer; the leading cause of death by disease for children.  Congress Actually Passed Funding For Cancer Research Today, Here's How.  Kids First Research Act 

There's been a lot of news lately, but let's not miss the fact that St. Baldrick's Foundation has raised nearly $16 million over the last 2-1/2 months!  St. Baldrick’s Fund Raising 

Jay Scott of Alex's Lemonade Stand Foundation shares his thoughts on the latest struggle to obtain Compassionate Use of a drug....as you know, Chimerix worked to open a new trail and get Josh the drug.  A Cancer Drug Could Save This 7-Year-Old. But the Company Behind it Won't Give Him Access.  Josh Gets New Trial

March 13

Here is the new report from the American Society of Clinical Oncology that looks at current trends and projected challenges for oncology in the coming years.  New report: “Cancer Care in America” 

 

           March 14

Supporting Siblings After Losing a Child to Cancer.  The Cancer Center at The Children's Hospital of Philadelphia.  Tuesday, March 18, 2014 from 7:00 PM to 8:00 PM (EDT)  Presented by:  Jennifer Lemisch, MA, ATR-BC, LPC  Art Therapist, Pediatric Advanced Care Team.  Webinar surporting Siblings 

It's a worldwide tragedy.... Tragedy of childhood cancer the focus of new national conference.  A new conference has been announced looking into the ordeal of childhood cancer, which will explore crucial issues that include barriers to research, funding and GP awareness.   NCCC14 

March 15

Why can't we figure this out without having to have special petitions and social media campaigns? Petitioning President Barack Obama:  FDA: Save 12-Year-Old McKenzie Lowe; Grant Her Compassionate Use of Antineoplastons   McKenzie Petition 

March 16

Please take a second to vote...Children's Hospital National Foundation is a non-profit organization that provides funds to children's hospital around the Nation. We are currently having an event that involves voting via facebook, twitter, or e-mail. If we get more than 6,000 people to vote we will be able to raise $10,000 towards research and treatment to Children with Cancer.  A Vote For Funds 

March 17

Ok, you know you're going to fill out a bracket, why not support the fight against childhood cancer at the same time?!  In It Together is hosting a March Madness (College Basketball) Bracket Challenge to help raise funds to drive programs in pediatric, adolescent and young adult cancer resources and advocacy.  Bracket Funds for Cancer

'Families Shun Girls With Cancer’ - The New Indian Express.  So sad... At a time when the country is pitching for equality and equal rights for all, it is a shocking revelation that girl children are not given proper treatment and care.  Human Chain for Awareness 

You can always root for the Spartans!  Emma: Spartans Find Inspiration In 8-Year-Old Lacey.  Lacey wasn’t a kid battling neuroblastoma, an aggressive form of childhood cancer. She was a Michigan State Spartan on their court.   

February 2014 news from PAC2: Some will break your heart, some will inspire you, some will educate you, some you will shake your head at, some is good news, some will ask you to take action, and some is just news about some of the most dedicated folks around: Childhood Cancer Parents, Advocates and Organizations.  February Update

 

 "Survivors who were 20 to 34 years old were 3.8 times more likely than siblings of the same age to have experienced severe, disabling, life-threatening or fatal health conditions. By age 35 and beyond, however, survivors were at five-fold greater risk."  Health Gap 

ST. BALDRICKS!  FUN FACT: St. Baldrick's just reached $20 MILLION raised today, which is $2 million MORE than last year at this time! THANK YOU for your amazing fundraising!  Photo

THON'S little brother... Four Diamonds Fund families reflect on their first #THON experience and the Penn State Dance Marathon support community!   Four Diamonds Photo 

Congrats to our buds at Cookies for Kids' Cancer who hosted its inaugural gala event – Chefs for Kids’ Cancer – in NYC on February 25th. They raised over $910,000. . .and counting!   Chefs for Kids’ Cancer 

From our buds at Rally Foundation for Childhood Cancer Research: Rally Idol is a live music show unlike any other at The Buckhead Theatre. On Friday, March 21, five amazing kids, each affected by cancer, take the stage and front the band, performing for a live audience and a panel of celebrity judges. Recording artists and former American Idols Bo Bice, Lauren Alaina, Anthony Federov, and Haley Reinhart!  Rally Idol 

"More children die from cancer than every other disease that effects children combined . One Thing video

March 18

Even in a place like Syria, childhood cancer takes its toll.  Cancer Takes Zacharia, A Syrian Child Caught Between War And Disease.  Neuroblastoma Cancer-A Heartbreaking Story 

"The most common genetic alteration ever reported in the brain tumor ependymoma has been identified. Researchers also have evidence that the alteration drives tumor development."  Gene sequencing discovers common driver of childhood brain tumor ependymoma.  Gene Sequencing Discovery

June 23 and 24 will be the Childhood Cancer Action Days in Washington, DC. You might be the one who convinces one of them that childhood cancer is a neglected disease, and they then fight for funding, and then research happens, and then a child is saved.  PAC2 Photo 

Did you see this!? The 46 Mommas Shave for the Brave passed $1.3 million!!  46 Mommas

Good News from SaveJosh!  Aimee Hardy Status Update 

 

HHOW will be sponsoring a Pediatric Cancer Town Hall meeting at the annual American Association for Cancer Research (AACR) meeting in April! The meeting will bring together more than 250 leading basic, translational and clinical researchers in academia, industry, pharma and govnt.  Discussions

                                                                                                                                                                      Another one of those cool companies: NetApp supporting St. Baldrick's Foundation!  ince 2007, NetApp employees have raised over $5 million for St. Baldrick’s

"Congress restored some science funding that had been slashed through earlier "sequestration," but the bulk of it went to physical science research through NASA, the National Science Foundation and other agencies. Biological and medical research through the NIH received more modest increases of about 3.5 percent.  Appropriate NIH Funding 

James Hetfield, Sammy Hagar and Billie Joe Armstrong go acoustic for hospital benefit.  Bay area acoustic jam for pediatric cancer.  Acoustic-4-a=Cure

Let's hear it for child life specialists!  Child Life Month | The Children's Hospital at Montefiore.  UTube Video

"We put a man on the moon, and we can ship watercress from California to Maine overnight. We should be able to get children the chemotherapy medications they need."--Tell it Dr. Thompson.  Choosing cancer's youngest victims?  Congress Blog

Philly folks. . . put on your P J's and get ready for some fun with our friends at ConKerr Cancer.--Friday March 21.    Cancer PJ Party at the Please Touch Museum

Report from Australia--"Indigenous Australian children are 36 per cent more likely to die within five years of a cancer diagnosis than non-Indigenous Australian children."  Poor Cancer Survival in Indigenous Children - Report  

March 21

CDC review of seven studies involving over 8,000 children suggests a link between childhood leukemia and exposure to high levels of auto exhaust. Direct cause-effect needs more study, researchers say. The study suggests that "precautionary public health messages and interventions designed to reduce population exposure to traffic might be warranted."  CDC: Higher cancer risk for kids living near busy roads

CCCA shares info on Improving Pediatric Palliative Care.   The topic of palliative care for children with cancer is difficult, uncomfortable, and painful – but also incredibly important. We were so glad to see this topic covered in the current issue of the ASCO Post, with an article on recommendations for improving palliative care in pediatric oncology.  The Children’s Cause Blog

A PAC2 kinda guy - "I'm going to be out there blowing my trumpet until we find the cure"  Kids Cancer Project founder Col Reynolds goes from driving buses to funding high-risk cancer research.  The Kids Cancer Project – Major Breakthrough 

THON comes to LA!  Khloe Kardashian official web site.  Lights-Camera-Cure Fundraiser Video

                                                                                                                                                                    

Congress should follow through on appropriating the pediatric cancer funds and more fully fund the NIH to help find treatments and cures for diseases and to maintain the nation's standing as the world's pre-eminent research hub.  Appropriate NIH funding

Karma. Adreian scored 41 last night as the Michigan State Spartans moved on in NCAA March Madness.  Lacey Holsworth like a sister to MSU's Adreian Payne  The cancer-stricken girl quickly befriended Payne when she met him during one of her hospital stays two years ago and their relationship has become a feel-good story.   

“Killian, who passed away in July 2003, is the inspiration for the Atlanta-based non-profit Curing Kids Cancer. The charity today completed its $1.5 million endowment at the Aflac Cancer Center."   Curing Kids Cancer Completes $1.5 Million Endowment for Clinical Research Office at the Aflac Cancer Center of Children's Healthcare of Atlanta at Scottish Rite.  Research Funding

March 22

The Who See Me Feel Me Woodstock.  Teen Cancer America is a charity devoted to improving the lives of teens and young adults with cancer.  Video

March 23

University of Delaware students danced for 12 hours Sunday raising $850,000 for cancer research. If you're going to raise more than $850,000 for children battling cancer, you might as well also have a good time doing it.  That was the theory for thousands of University of Delaware students on Sunday participating in the annual UDance marathon 

March 24

Taylor Swift made the weekend a little brighter when she stopped by New York Hospital Memorial Sloan-Kettering Cancer Center to pay a visit to young fans.  Smiles for Healing 

March 25

School officials did change their mind, but originally banned 9 year old Kamryn because she shaved her head to support her friend Delaney who is fighting neuroblastoma.  Act of Compassion

How many times will we have to post bad news for survivors before something changes in the way we treat our youngest cancer patients?  "By age 50 years, more than half of childhood cancer survivors have experienced a severe, disabling, life-threatening, or fatal health condition, according to a study published online March 17 in the Journal of Clinical Oncology."  Elevated Morbidity 

“By studying AT/RT, we’re offering hope not only to AT/RT patients, but to patients with many more types of cancers as well,” said Dr. Charles Roberts, scientist at Dana-Farber Cancer Institute and Boston Children’s Hospital.  Rare Cancer Holds Research Key 

                                                                                                                                                                    

"Thanks to a recently announced grant, however, the effort in Texas to develop new treatments for childhood brain cancers will start the year with fresh funding and support."  Childhood Brain Cancer Research Gets New Hope, Texas Research Institutions Are Awarded $3.2 Million From CPRIT, Carson Leslie Foundation.  Funding brings Hope  

March 26

"If you are a grandparent who has been directly impacted by pediatric cancer, we invite you to join our cause! Together we can give a voice to our legacy."   Grandparents in Action (GIA) is an informal association of grandparents directly impacted by having a grandchild who was diagnosed with cancer and are dedicated to improving the outcomes of children with cancer, ages infants to 19.   GIA 

It may not seem like it, but summer IS coming. Check out Sunrise Day Camp for children ages 3-16, the only dedicated full summer day camp in the nation for children with cancer.  Sunrise Day Camp

Congratulations to our friends at Northwestern Mutual for winning the 2014 Corporate Citizenship Film Festival Award for its video "The domino effect of childhood cancer". The video was created to increase awareness about childhood cancer and the company’s commitment to the cause.  Video

We all bitch about the lack of funding from the National Cancer Institute but let's look at one fact that backs that bitching up (beyond the fact they are kids and there should simply be NO QUESTION about this).  NCI Funding: more lies, damn lies and statistics...Comparison PYLL and Funding For Cancers

Came across this lady from Canada on twitter. Her daughter is in treatment, and she is making these adorable hats.  She doesn't selling them. She and other knitters make them and give them away, to spread awareness.  Hats for Cancer Awareness

From our buds at Alex's Lemonade Stand Foundation! This year’s Symposium will take place on Saturday, August 2nd at the Westin Philadelphia Hotel. Our Childhood Cancer Symposium is a FREE, one-day event designed to be an educational resource for families of kids with cancer. Event

Acoustic 4 A Cure fundraiser for the Pediatric Cancer Program at UCSF Benioff Children's Hospital just got bigger and more rockin'even. Green Day and Metallica have joined the program. Don't miss it--April 15 at the Fillmore in San Francisco .  Acoustic fundraiser Concert

"The much-anticipated Sohn Investment Conference provides a forum for investors to share fresh market insights, while also serving as a fundraiser to support innovative pediatric cancer research. The Sohn Conference Foundation supports pioneering research programs for the treatment and cure of pediatric cancer through a variety of renowned investment events around the world. Since 1995, the conferences have raised in excess of $50 million for this cause.  

 

March 27

Funny, the dissenting vote guy is bald. Frustrating, that with the nationwide publicity these types of stories get, we never get our REAL takeaway message out -- that childhood cancer kills more kids than all other diseases that effect children.  Board votes to allow  shaved head student back in class

Former Braves third baseman Chipper Jones is among a group of current and former professional baseball players who will shave their heads to help raise funds for Pediatric Cancer.  Chipper Shaves Head 

Enlisting supercomputers in the fight against cancer--a new route to personalized medicine?  Enlisting a Computer to Battle Cancers, One by One.  Supercomputer Watson turns its Attention on Brain Cancer.

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