Dear PAC2,

On a recent Making a Difference segment on NBC Nightly News with Brian Williams, he highlighted people paying for the person behind them in line at the local Starbucks or McDonald's drive-through.  Hey Brian - we think the people and organizations that we are honored to report on Make A Difference and Pay It Forward every single day!  They and the kids deserve a week-long special on every major network!

Although we may never get there; together we will cure childhood cancer.  Here's the January 2014 news from around the childhood cancer community.

 

Research

Dr. Stephen Sallan raises some important questions about clinical trial process for children. "We stand at the edge of revolutionary changes in our understanding of cancer, as we learn that it is defined more by genetics and biological pathways than location of the malignancy. While children and adults may react to the same drug differently, if a pediatric tumor and an adult tumor share the same underlying biology, we should use that knowledge to benefit both.  Sick Kids Need Faster Drug Testing 

In laboratory studies, researchers found that the pathway, called mammalian target of rapamycin (mTOR), was highly active in pediatric low-grade gliomas, and that mTOR activity could be blocked using an experimental drug, leading to decreased growth of these tumors. More studies to follow...  Common genetic pathway could be conduit to pediatric tumor treatment 

Dr. Jennifer Pope, a pediatric oncologist at Levine Children’s Hospital in Charlotte, said she and her colleagues work hard to make sure young patients and their parents are aware of the risks of cancer treatment, including potential harm to reproduction. “What methods we have for fertility preservation differ depending on your sex and your age,” she said.  Charlotte-area teen freezes ovarian tissue to preserve fertility af...   

Amazing science--Imagine the possibilities.  Study Says New Method Could Be a Quicker Source of Stem Cells  Acid Bath 

In advanced-stage neuroblastoma patients with residual metastases in their bone marrow following two cycles of anti-GD2 immunotherapy, another cycle of this treatment is futile and only causes adverse events, based on a review of 343 stage IV patients treated at one U.S. center.  Gene panel identifies residual neuroblastoma metastases 

Data from the TARGET program (http://ocg.cancer.gov/programs/target), a collaborative effort thru NCI involving COG, the Cancer Genome Atlas and others (see photo) that studied ALL, AML, kidney tumors, osteosarcoma, and neuroblastoma is now available to researchers studying the genetics of childhood cancers.  Cancer Genomics Hub Adds Childhood Cancer Data 

"The findings, the researchers said, support the use of a music-based intervention delivered by a music therapist to help adolescents and young adults positively cope with high-risk, high-intensity cancer treatments."  Study findings give added proof to music therapy benefits for pedia...  

"Great strides have been made in the treatment of neuroblastoma, a rare cancer of nerve tissue that usually occurs in children and most commonly arises in the adrenal gland. An array of therapies has been effective in slowing or stopping the disease — even when it spreads to lymph nodes, bone, and bone marrow — and increasing chances of survival.  Neuroblastoma Research 

It's only a thesis at this point, but it's good to see talented young minds working on curing cancer instead of a new video games!! #neuroblastomasucks.   Natural substance studied for future treatment of possibly incurabl... 

News from NMTRC: In summary, our results show that the HDAC inhibitor PCI-24781, when given as a single agent, exhibited significant cytotoxicity and induced apoptosis in a panel of NB cell lines.  NMTRC Post 

Ewing Sarcoma--"This study highlights the complex cascade of events that cause cancer. Even in seemingly "simple" cancers like Ewing Sarcoma with known oncogenic drivers, cancer-causing action tends to depend on a cascade of events the oncogenes initiate. In other words, oncogenes may sit at the head of long, complex strings of cellular events, all of which are needed to cause cancer."  Researchers suggest new targets may provide druggable alternatives ...

Rhabdomyosarcoma Research--"Scientists have mapped the genetic changes that drive tumors in rhabdomyosarcoma, a pediatric soft-tissue cancer, and found that the disease is characterized by two distinct genotypes. The genetic alterations identified in this malignancy could be useful in developing targeted diagnostic tools and treatments for children with the disease.   The Genetic Mapping Study 

Ovarian Germ Cell Tumors--"A strategy of surgical resection followed by surveillance can eliminate the need for 50% of patients with stage I pediatric malignant ovarian germ cell tumor to undergo chemotherapy, according to findings from the Children’s Oncology Group."  Surgery, surveillance may obviate chemotherapy in 50% of stage I pe... 

Pediatric Palliative Care--"For patients with cancer, our focus tends to be on symptom management, easing distress, and enhancing well-being and quality of life for the child and family.   Palliative Care

"Although more work is needed, our study may provide researchers with the rationale to develop genomics-guided therapeutic interventions with greater efficacy and fewer side effects than the treatments options currently available for pediatric patients with rhabdomyosarcoma,"  Mapping Genetic Changes that Drive tumors 

 

Fundraising

Here's the story about FY2014 funding for your kids. Thanks to Children's Cause for Cancer Advocacy!  FY2014 Appropriations Partially Restores Sequester Cuts  

Did you know that Alex's Lemonade Stand Foundation raised over $16 million in 2014!!!  Where the Money Goes 

What better use of the old bessie that took you back and forth to the early morning appointments thru rushhour traffic, was laughed and cried and puked in, was on the open road with a totally underage driver and is full of memories than to put it to good use in the fight against childhood cancer? Donate your old car and 80% of the proceeds will go to Alex's Lemonade Stand Foundation. They will even come pick it up, driveable or not.  Auto Donation 

We are thrilled to announce that Childhood Cancer Canada has raised $1 million for childhood cancer research through St. Baldrick's head-shaving events!  Canada Branch 

Thank you to the Aflac agents who sell its policies and voluntarily give a combined $445,000 every month from their commissions!!  Aflac aims to top $100 million in battle against childhood cancer 

Here's some good news! Thanks Carson Leslie Fan Page and The Cancer Prevention and Research Institute of Texas (CPRIT)!  Childhood Brain Cancer Research Gets New Hope, Texas Research Institutions Are Awarded $3.2 Million From CPRIT, Carson Leslie Foundation.  Carson Leslie Awards 

Our thanks to Starbucks for their support of Go4theGoal!!  Starbucks in the Philadelphia Market Raise Nearly $30k to Support G...   

T-shirt sale on Headwear of Hope today!  Hope Tee

The Avett Brothers bassist Bob Crawford's daughter Hallie was diagnosed with cancer in 2011; and they're giving back.  Avett Bros. team up with Counter Culture coffee to help St. Jude's  

Lucy's Love Bus is headquartered in Massachusetts. It helps families coping with childhood cancers in 23 states, including Connecticut.  Lucy's Love Bus delivers comfort for kids with cancer 

There is so much strength that comes from the diversity of efforts and people that fight childhood cancer. Over the past 20 years these students have raised over $700,000 for childhood cancer research and need your help to reach the goal of $50,000 for this year.  Welcome to 2014 J.K. Lee BBAT 

A true leader in the childhood cancer community, Kathleen Ruddy, Chief Executive Officer of the St. Baldrick's Foundation, is shaving her head on March 1, 2014.  Video Message 

Our favorite 46 Mommas Shave for the Brave are headed to Boston!  Shave for Brave

 

Stories & Writing

"Then he relapsed, and we were simply out of options. That's when Jeff and I knew that we needed to help move childhood cancer research forward. It's simply unacceptable to be faced with a cancer for which there are no treatment options at all, especially for kids who should have their whole lives ahead of them."  Pablove co-founder channels loss into hope 

Dear President Obama, I am writing this letter to you not as a citizen to a president, but rather from one father to another. I read somewhere that out of the numerous letters sent to you only ten are selected by your aides for you to read personally.   "A Day of Yellow and Gold to Fight Childhood Cancer" 

For Anita and David Garmo, however, every day has been a trial.  This is the second time they’ve walked this painful path. Their son, Isaac, now 10, was diagnosed with stage 4 neuroblastoma when he was 13 months old. After going through chemotherapy, radiation treatments and stem-cell transplants, he’s been in remission since 2005."  Now their six-year-old daughter Julia has the same diagnosis.   Courage through cancer: Rare cancer hits home, twice 

This childhood cancer survivor wants to join the Texas National Guard but is being denied because of his cancer experience. His mother would like you to sign a position in support of his application, asking for the military to reconsider.   Get Tx National Guard to accept my son's application.

Let others follow this example. Classmates of fifth grader CiCi Collins, a 2-time cancer survivor, have built an extensive academic project based around her story....  Video of CiCi 

3.5 years of chemo... DONE!  Hooray Hooray for Momma Michelle's Caden!  46 Mommas Shave for the Brave 

Congratulations to Aaron Rodgers, a big MACC Fund - Midwest Athletes Against Childhood Cancer, Inc. supporter, for winning the NFL's Bart Starr award for outstanding character and leadership in the community!!  Aaron Rodgers wins the 2014 Bart Starr award 

Forbes tells Alex's story (and a little about Alex's Lemonade Stand Foundation too!)  Taking Inspiration From Tragedy: Parents Start Pediatric Cancer Foundations To Honor Children.  Honoring Alex             

"A collection of the journals, fiction, letters, and sketches of the late Esther Grace Earl, who passed away in 2010 at the age of 16. Photographs and essays by family and friends will help to tell Esther’s story along with an introduction by award-winning author John Green who dedicated his #1 bestselling novel The Fault in Our Stars to her."  This Star Won't Go Out: The Life and Words of Esther Grace Earl

"It was – and is – an improbable outcome and a testament to the extraordinary doctor in whose care we placed Williams life. However, when that movie ends and the credits roll you are left with the “..and they lived happily ever after” feeling that all such movies must end with. Unfortunately the reality of surviving childhood cancer is far different than what we all hope and want it to be." Thanks Pat!  Will’s Dad’s Blog 

Bereaved parent, would you add anything?  6 Things to Never Say to a Bereaved Parent 

Members of Heroes4Higher serve as pallbearers for the funeral of a 4-year-old West Virginia boy they visited during his battle with cancer.  Local 21 CBS News

Vince and Zac.  Despite Cancer, Best Friends Strengthen Their Bond  When one little boy’s best friend was diagnosed with cancer, he thought of a few special ways to help out.  Best Friends Video

To honor Shayla Mitchell on the 5th anniversary of her death, we present you with "A Father's Love" by her dad Tattoo Tom. This is a condensed version of a video that we produced for Stillbrave in 2013. Truth 365 Video   

Rod Carew is a Hall of Fame baseball player. But he's a better human being.  A father's mission 

Don't know who Aaron Eckhart is, or what Rabbit Hole is. But I do know you can't pretend to lose a child.  Aaron Eckhart Pretended to Lose a Child in Support Group While Prep...   

"But . . . buts are never good are they?"  Sometimes the reality hurts so much.  Morning 

This original song by Dustin Craig was inspired by his girlfriend's 4 year-old niece who was diagnosed with leukemia in October 2013.  UTube song “Trade Places” 

A tribute to the other superheroes among us:  Dear Parent of a Sick Child (Letter 2) 

7 years ago on January 27, 2007, Andrew played 4 soccer games. Just 48 hours later, Andrew was at A.I. duPont Hospital for Children| Nemours with a diagnosis of Leukemia. Within hours, his body started crashing and he was rushed to the Pediatric Intensive Care Unit.   The Andrew McDonough B+ Foundation honors Andrew through advocacy, family support services and funding research. 

Advocacy

The Coalition Against Childhood Cancer (CAC2), is a nonprofit membership (57 orgs and counting!) organization that serves as a hub for organizations and dedicated individuals working to support and serve the childhood cancer community.  CAC2 began as a grassroots movement to bridge together a community of members and organizations that represent various missions, yet share a common goal to assist individuals impacted by pediatric cancers. Drawing from the uniqueness that each organization may offer, CAC2 serves as a neutral facilitator that bands together advocates for the pediatric cancer community.

If you or your org is interested, you're invited to join CAC2′s Advocacy Interest Group. We meet by conference call bi-monthly to discuss state, national and international advocacy efforts and priorities of pediatric cancer organizations. Call-in to share and discuss bills, regulations, and regulatory efforts you are working on to benefit children with cancer, or just to hear what others are working on. In addition to legislative issues, this month we will be selecting our Coordinating Team to help plan the Advocacy calls and other shared activities. Nancy Goodman, from KIDS V CANCER will be moderating the discussion.

Tuesday, February 4, 2013, 12:00 – 1:00 EST,

Conference call number: 712-432-0850, Password: 419689#

Congrats to Dr. Gregory Reaman at U.S. Food and Drug Administration as he helps make the world a better place for children!  Gregory Reaman Helps Make the World a Better Place for Children

Continue to learn more about issues that affect the childhood cancer community by watching this episode of BioCentury that features Nancy Goodman .  Bio Century Video 

"It started with a letter to every Senator....."  New Bill for Pediatric Cancer funds Introduced - Video 

New Children's Cause for Cancer Advocacy blog: They report on last week's FDA workshops on pediatric rare diseases. Read on for some of the big questions that were raised, and leave CCCA comments with your thoughts!  Next steps on FDA rare disease workshops 

We must be the voice for our children. Thanks TheTruth365   Be a Voice for the Children Video        

This Week in Pediatric Oncology (TWiPO) speaks with Gavin Lindberg in a recent episode, entitled Effective Advocacy.  Gavin is the President and Co-Founder of The EVAN Foundation which was established in memory of his only child Evan Lindberg. Evan bravely battled neuroblastoma for four years before passing away at the age of 7 in 2010.  Pod Cad 

Thanks to new co-sponsors of the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act Congressman Jim McGovern (MA-2), Congressman Dave Loebsack (IA-2), and Congressman John Yarmuth (KY-3). And thanks to Children's Cause for Cancer Advocacy for pushing the agenda!  Ask Congress for More Support in Funding 

"Amber’s compelling story of her son, Noah, his battle with brain cancer and the hope that has resulted from her tireless work to find a cure brought the audience to laughter, to tears and eventually to their feet."  Curing Pediatric Cancer Video 

 

Awareness

Alan, Hayden, Lauren, Harlem and Grace = The 2014 St. Baldrick's Foundation Ambassadors!  Ambassadors 

Philly’s going yellow! Be on the look out for these landmarks which will turn their lights yellow this week, in honor of Alex and our 2014 Lemon Ball happening tomorrow night!  Alex's Lemonade Stand Foundation 

Our friends at Flashes of Hope and the Columbus Blue Jackets honoring some childhood cancer heroes!  Blue Jackets celebrate pediatric cancer heroes through Flashes of Hope 

Voting is now open for the 2014 Film Festival.   The Center for Corporate Citizenship’s annual Film Festival provides companies with an opportunity to demonstrate how they have utilized video as a communication tool.   Voting Open for Favorite Video 

Max (Team SuperMax) is asking for your help in setting a world record by creating the longest rainbow loom chain EVER! It's all to raise awareness of childhood cancer. Max wants kids everywhere to help him make the WORLD"s largest rainbow loom chain.  LOOM-A-THON 

An 8-year-old Wisconsin boy is packing his bags to go to the Super Bowl, thanks to Russell Wilson.  Superbowl Invite              

The Huffington Post blog spreading awareness of childhood cancer as they give Rockstar Ronan and The Ronan Thompson Foundation a shout out!  Maya Thompson, Rebel with a Cause 

Congrats to our buds at St. Baldrick's Foundation for enlisting support for the fight against childhood cancer from Samuel L. Jackson!!  Samuel L. Jackson in new childhood cancer PSA 

 

Survivorship

Since 2007, the Memorial Sloan-Kettering Cancer Center Department of Pediatrics has held an annual convocation to celebrate current and former patients who are graduating from high school or have earned their GED. Watch some of the members of the class of 2013, along with their families and Memorial Sloan Kettering staff, celebrate this milestone at the Pediatrics Convocation on June 13, 2013.  Pediatric Convocation 2013 

After adjusting for existing chronic health problems, researchers calculated that frail childhood cancer survivors were 2.6 times more likely to die than their non-frail counterparts.  Adult survivors of childhood cancer at risk of becoming frail at an... 

Boston's new mayor is a childhood cancer survivor.  Boston swears in 1st new mayor in 20 years: Martin Walsh overcame alcoholism, childhood cancer.   Childhood cancer survivor 

"A St. Jude Children’s Research Hospital study found that despite being diagnosed with life-threatening illnesses, childhood cancer patients are no more likely than their healthy peers to develop post-traumatic stress disorder (PTSD). The research appears in the current online edition of the Journal of Clinical Oncology."  Cancer Diagnosis Doesn’t Increase a Child’s Risk of Post-Traumatic ... 

“Our findings clearly demonstrate that pediatric cancer patients’ temperament and personality play significant roles in individual differences in [quality of life]."  Temperament, personality affect quality of life in children with pediatric cancer  

"While the chemotherapy kills some heart cells, the remaining cells will pick up the work. In some cases, over time, they can't compensate any longer, creating heart failure or other problems"   http://www.thespec.com/news-story/4333754-heart-transplant-saved-ch... 

Post-treatment care from doctors that understand the problems childhood cancer survivors face is critical to the health and well-being of all childhood cancer survivors. But are we doing a good job?  "We've created a new chronic illness"   

Hoda Kotb's mission in 2014 is to help kids with cancer. "As a cancer survivor myself, I know what it feels like as a grownup," Hoda said. "But what I can't even fathom, even now, is what it feels like to be a kid ... struggling with this grown-up disease, something they shouldn't have to deal with.  Shine a Light Today Photo 

Post-treatment care from doctors that understand the problems childhood cancer survivors face is critical to the health and well-being of all childhood cancer survivors. But are we doing a good job?  "We've created a new chronic illness" 

 

Education

Register today for this free webinar sponsored by The Arms Wide Open Childhood Cancer Foundation and Children's Hospital of Philadelphia...."Unique Challenges of Parenting an Adolescent or Young Adult With Ca...  

An excellent link to some written educational materials for families facing childhood cancer from our friends at Children's Hospital of Philadelphia, Cancer Center at CHOP   Patient and Family Education Materials 

Childhood cancer is a WORLD WIDE problem. Financial Times supports World Child Cancer who fights cancer in developing countries where it's estimated that 80% of children die from cancer....  Region-specific  Solutions are best for Cancer Patients 

Worldwide childhood cancer kills around 250 kids a day.  Year In The Life Of A Pediatric Hematologist-Oncologist In Africa.   Texas Children’s Blog 

Know the facts about childhood cancer.  Childhood Cancer Awareness: The Facts 

Excess Mortality - the estimated probability of a 5-year survivor living 30 years from diagnosis is 82%.  Excess Mortality 

Our thanks to Children's Cause for Cancer Advocacy for this look at the great art programs available from Pablove Foundation, Children's Cancer House For The Arts, Ryan's Light and Tracy's Kids!  The Healing Power of Art Therapy 

Understand how to help minimize radiation exposure to your child during treatment for childhood cancer with resources at Image Gently....  Be Your Child’s Advocate 

About.com has added a new topic. In their Health category, they previously had 8 types of cancers featured. They now have a ninth -- CHILDHOOD CANCER and our friend Diane Moore is their new Childhood Cancer guide. With the google love that about.com receives, this is a wonderful opportunity to raise awareness and educate people about childhood cancer.  Launch of Childhood Cancer Site on About.com 

 

 

And….

Thank you Peyton Manning.  A Video Message from Peyton Manning-St Vincent 

Congratulations, Russell Wilson! Video Message Russell Wilson-Seattle Children’s

Alex’s Lemonade Stand Foundation is happy to announce another round of free book distribution of “Alex and the Amazing Lemonade Stand” .  The book was written by Jay and Liz Scott with help from Alex.  We would encourage you to take a copy to your kid's class or library.  We like to describe the book as an inspiring and true story and will fill people up with emotion and motivation to make a difference in the lives of kids affected by childhood cancer.   If you are interested in receiving a free copy of this age appropriate, fun rhyming book, please email Johanna Butler at-J.Butler@alexslemonade.org with your name and shipping address.

PAC2

 

 

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You did an amazing job with the update!  I am glad to see that there is more awareness now than there was when Bob started PAC2 several years ago.  Every bit of awareness helps, and hopefully will one day lead to a Cure.  In the section that says "Bereaved parent, would you add anything?  6 Things to Never Say to a Bereaved Parent",  I have one thing to add that has been said to me over and over in the past 11 months since Vinny died.  "At least you are young enough to have another baby."  First, I am 42 years old, my husband is 58 years old… and he had a vasectomy 3 years ago.  We don't want another baby, and even if we did, it would never ever replace Vinny.    I have had several thoughtless comments made to me since the loss of Vinny, but this one is the one that annoys me the most. If you don't know what to say, just say "I am sorry." or "I am thinking of you." 

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