PAC2 Update - January 2012

[PAC2]

Dear PAC2,

Welcome to the first PAC2 Update of 2012. This marks the fifth year that we have shared the amazing events, inspiring people and organizations, and incredible news and stories from the childhood cancer world (Past Updates). We hope that you find them useful, and should you have feedback or input we’d love to hear it at [e-mail].

 

Fundraising

• The St. Baldrick's - 2011 Annual Report. Need we say more? Well…we could say that 82% of a record-breaking $28+ million was directed to childhood cancer research, or; we could say they have included PAC2 data on life-years-lost from our NCI funding (or lack-there-of) piece. Thank you St. Baldrick’s!!
• The Rally Foundation for Childhood Cancer Research are adding to the $2.2 million they've raised in the first five years with a $160,000 donation from its corporate sponsor Constellation Brands thru Rally's Corks Against Cancer campaign....hmmm, maybe a chardonnay?!
• Alex's Lemonade Stand Foundation teamed with Toys"R"Us and hosted an event by new corporate sponsor LEGO Systems! Supporters built a complimentary LEGO Friends lemonade stand to take home and for each stand built, the LEGO Group donated $1 to ALSF to fight childhood cancer (up to $10k)! Thanks LEGO!
• And, ALSF's 2012 Lemon Ball was an unforgettable evening!  More than 800 people supporting the Foundation and vision of Alex, came together to raise over $700,000 for childhood cancer research!
• GNC, the nation's largest specialty retailer of health and wellness products, announced that its employees and customers donated a total of $2.79 million during GNC's seventh consecutive annual partnership with St. Jude Children's Research Hospital
• The NB Alliance needs $500,000 to open a phase II clinical trial to give DFMO to kids who are in remission. This is a groundbreaking study and we are about 1/3 of the way there. We ask foundations, corporations, individuals, and everyone to help!
• CureSearch has the 2012 walk schedule up---February walks will be held in West Palm Beach, Hollywood and Miami, FL; Milwaukee, Phoenix and Houston!! The CureSearch Walk is a unique event, not only because dollars raised fund ongoing clinical trials at local hospitals, but also because the patients enrolled in these trials - past and present - are an integral part of the event.
• THON, the Penn State Dance Marathon - "When they say We Are Penn State, this is what they are talking about...I wish everyone could see and feel the love that is in this room." - Joe Paterno, THON 2009. Joe loved THON and the family asked in lieu of flowers donations be made to THON and the Special Olympics in his honor.
• WOW! - the Ben Towne Foundation donated $5 million to Seattle Children's Hospital to support new cancer treatments focused on using a child’s immune system to fight cancer. Seattle Children's receives $5 million to accelerate child cancer r... - Seattle Children’s will rename its Center for Childhood Cancer Research the Ben Towne Center for Childhood Cancer Research.
• The MACC Fund - Midwest Athletes Against Childhood Cancer, Inc. will be hosting Aaron Rodgers, Super Bowl 45 MVP, for the third year to raise money for childhood cancer research! Third Annual Evening with Aaron Rodgers
• The Pediatric Brain Tumor Foundation Ride for Kids raised over $4.5 million in 2011!!
• Hyundai Hope on Wheels Is Honored by Auto Industry - The 16th annual Urban Wheel Awards was heavy with hope for Detroit's future as event-goers honored Hyundai for its Hope on Wheels program which last year donated over $7 million directly to childhood cancer research. 2012’s Tour will be starting soon.
• Our favorite 46 Mommas Shave for the Brave are at it again, Year #3. Do you want to be one of 2012 46 Mommas?  Ask yourself -- Why wouldn't I??  The team is forming right now. They’ll be shaving their heads in Los Angeles in late July to support the St. Baldrick's Foundation in the mission to fund a cure for pediatric cancer. Email [e-mail] for an application.
• We loved this picture from Cookies for Kids' Cancer sending over $1 million in grants checks to Children's Hospital of Philadelphia, Texas Children's Hospital, St. Jude Children's Research Hospital, Memorial Sloan-Kettering Cancer Center. Inspired? Register to host an event today at www.cookiesforkidscancer.org.

 

 

Research

• Alex's Lemonade Stand Foundation summaries the Major Advances in Childhood Cancer Research in 2011
• St. Jude Children's Research Hospital has launched a freely available website for published research results from the St. Jude Children’s Research Hospital – Washington University Pediatric Cancer Genome Project (PCGP) - St. Jude Children’s Research Hospital launches data website for gen...
• It's incredibly simple to find something we can all agree upon as human beings....Iranian research to help moms of kids with cancer. What if the entire world collaborated in a war on childhood cancer? - Iranian Journal of Cancer - MBCT Therapy for Mothers of Children wi...
• Music therapists can help preteen cancer victims forget that fifth needle of the day - or the fact that they haven't seen their friends and classmates in months - Spotlight falls on music therapists
• St. Jude announced that Cancer sequencing initiative discovers mutations tied to aggressive...
• Scientists have made a major genetic breakthrough that could change the way pediatric cancers are treated in the future. The researchers identified two genetic mutations responsible for up to 40 per cent of glioblastomas in children - Genetic breakthrough for brain cancer in children
• Solving Kids Cancer presents the latest TWIPO podcast (you DO know what TWIPO means right?) on the latest neuroblastoma research. - Solving Kids' Cancer - This Week in Pediatric Oncology (TWIPO) – Dr. Tim Cripe and his co-host Dr Lars Wagner in a fast-paced, in-depth, and comprehensive survey of 18 of the most important papers on neuroblastoma published in 2011
• For your info via Dana-Farber Cancer Institute: Genetic counselors at Dana-Farber and Children's Hospital Boston recommend that children with sarcoma have testing for a rare syndrome that may raise the risk of other cancers later in life. - Insight » Genetic counseling now recommended for children with sarcoma
• Exciting news from our friends at Max's Ring of Fire: Giselle Sholler, Co-Director of Pediatric Cancer Translational Research Program at the Van Andel Institute announces that, with the support of Dell Services, the first genomic-based pediatric trail for neuroblastoma will be kicked off. She says: "Once a child with neuroblastoma has relapsed, there is no curative therapy. We have been able with lower-dose therapies to extend the lives of these children over the past 5 years. If we can understand what's driving the tumors, stop them from growing, and ultimately kill them, that's a cure." - First Genomic-based Pediatric Trials Launched in Neuroblastoma - Th...
• On another positive note: US biopharmaceutical companies are currently researching 282 medicines to help meet the unique health care needs of children and adolescents, according to new industry data. The 282 potential new products, which are all either now in clinical trials or under review by the FDA, include: 54 potential new treatments for cancer, which is still the leading cause of death by disease among US children.
• The Pediatric Cancer Summit at Children's Hospital of Philadelphia gave childhood cancer advocacy and community fundraising groups and members of the media the opportunity to listen to five of CHOP’s scientific experts discuss their work. Presenters, Drs. Maris, Grupp, Curran, Balis, and Kazak, spoke about cancer research being conducted at CHOP. Now you can see and listen to presentations/papers from the event at the link - Pediatric Cancer Summit 2011
• St. Jude Children's Research Hospital and the Pediatric Cancer Genome Project published the first details of the genetic alterations fueling a subtype of ALL known as early T-cell precursor ALL (ETP-ALL) were ID'd. The results suggest ETP-ALL has more in common with AML than with other subtypes of ALL. The study appears in the Jan 12 edition of Nature - Cancer sequencing project identifies potential approaches to combat...
• NB Globe Neuroblastoma News shares a new trial now enrolling for relapsed or refractory NB (phase I/II): this is a randomized trial comparing 2 agents (temozolomide + irinotecan) to 3 agents (temozolomide + irinotecan + TPI-287) - Randomized Efficacy Study of TPI 287 to Treat Primary Refractory or...
• It's official: grief can break your heart
• St. Jude Children's Research Hospital celebrated 50 years.
• The St. Baldrick’s Foundation held its second Research Priorities Summit in New York, January 7-8, 2012. Nineteen childhood cancer research experts attended, volunteering their time and expertise to advise the Foundation’s board and grants staff on funding priorities. The purpose of the 2012 Summit was to help guide the Foundation’s strategic plan, ensuring that all children's cancer research funds will continue to make the biggest impact possible for childhood cancer patients and survivors.  Read more here.

 

Advocacy

• SAVE THE DATE!! - June 4-6, 2012, Washington DC. The Alliance for Childhood Cancer and its members including St. Baldrick's Foundation, CureSearch, American Childhood Cancer Organization and Children's Cause for Cancer Advocacy have come together to host a two-day event that includes issues and advocacy training, and pre-arranged Capitol visits. Founded in 2001, the Alliance for Childhood Cancer is a forum of national patient advocacy groups, and medical and scientific organizations. These organizations meet regularly in Washington DC to share ideas and concerns and work collaboratively to advance policies leading to improved research, public education, and diagnosis, treatment, supportive care and survivorship for children and adolescents with cancer. For more info contact: [e-mail], [e-mail], [e-mail], or [e-mail].
• The Creating Hope Act now has 118 co-sponsors! A critical time is approaching so look for more communication on how and where you can best advocate for this important legislation to incentivize pharmaceuticals to invest in childhood cancer research. For more information on the Creating Hope Act or what you can do to support drug development for rare pediatric diseases, please download this summary of the Creating Hope Act or contact [e-mail].
• Children's Cause for Cancer Advocacy bring you the latest news from DC on the drug shortage, NIH funding and other related stories! - The Next Step, January 2012
• The St. Baldrick's Foundation is proud to announce the creation of the Foundation’s new advocacy effort, Speak Up for Kids’ Cancer that will inform and engage volunteers in advocating for the public policy issues that affect kids with cancer!! St. Baldrick’s Launches Advocacy Effort to Create Change for Kids w...

 

Awareness & Other News

• Aimee's Army will again have a float in Scranton, PA’s St. Patrick's Day parade (3/10/12) to raise awareness for childhood cancer. If your local and would like to join please let them know.
• J.T. Gaskins, 17, is a leukemia survivor who decided over the holidays to grow out his hair and donate it to Locks of Love. But officials at Madison Academy in Burton have ruled that his hairstyle is violating school policy - School suspends cancer survivor over long hair he plans to donate
• Make Some Noise: Cure Kids Cancer Foundation, Inc. doing just that...making some noise!! Congratulations and all our best to Malcolm! Office of the Governor | Newsroom
• ‎"I found out that the system is really broken" - A CBS story Younger patients struggle in war on cancer - New research shows progress is being made in the war on cancer. But Dr. Jon LaPook reports on a largely unknown group that is still fighting a losing battle against the deadly disease.
• Ugh….Ohio parents plead guilty to neglect in son's cancer death - Two Cleveland parents who had their new pit bull dog treated for fleas, but neglected to take their cancer-ridden son to doctors, pleaded guilty on Monday to one count each of attempted
• PBS ran a couple stories on childhood and cancer in general, and created a childhood cacner awareness photo page on Pinterest. Health Reform: Changing the Game for Pediatric Cancer Patients? which was a great story with quotes from Children's Cause for Cancer Advocacy, and Kids and Cancer: Why Pediatric Cancer Cure Rates Have Improved So Much. This piece didn't identify the many childhood cancers with low survival rates...or the funding disparity and seemed to give the impression that current patients don't suffer side effects or long term effects...some of your comments.
• A Charlie Brown episode from the 90's where he says "Are you going to die"....Linus wonders "Why?"...Lucy is uniformed and thinks it's catchy....Janis is a young girl with cancer. Linus strongly stands up for Janis when she is bald and being teased. Janis's sister girl feels ignored. Compassionate and real...you should watch this, it's very well done...and in the end, Janis has a surprise for Linus. - Why, Charlie Brown Why?
• Declaration of War is a new movie about a young couple whose baby was diagnosed with a brain tumor. You should also read the great blog by our friends at Children's Brain Tumor Foundation about NPR News's review of the movie - http://bit.ly/xWXQMy

 

Family & Patient Support

• El sitio web CureSearch está ahora disponible en español! – The CureSearch website is now available in Spanish and the Children's Oncology Group's Family Handbook for Children with Cancer, 2nd Edition is now available, free of charge, at your COG hospital. This updated resource, funded by CureSearch, provides parents and families with information about children’s cancer and the many tests, procedures, and treatments involved in caring for a child with cancer. Ask your healthcare provider for a copy. Children's Oncology Group Family Handbook now Available!
• The The National Children's Cancer Society have opened the applications for the 2012-2013 school year to all you survivors!!! Thanks NCCS!! National Children's Cancer Society - www.beyondthecure.org- The Beyond the Cure Scholarship Program was created to award college scholarships to childhood cancer survivors who have demonstrated the ability to overcome the difficult challenges of cancer with determination and motivation.
• The University of Delaware UDANCE is 38% of the way towards its goal of raising $400,000 for The Andrew McDonough B+ Foundation this year!
  
• Do you know SuperSibs!? They provide outreach and education, and comfort and care especially for siblings of children with cancer, who have their own needs.
  

 

Your Thoughts

• "It has been over 5 years since my 9 yr old daughter was first diagnosed with cancer (Rhabdomyosarcoma), and never once did I think Why Ishani?" - Longtime PAC2'er Dharshini Wallooppillai asks Why?
• “NED” they proclaimed and sent us home. Little fanfare, even less preparation....The world seemed changed and yet incredibly the same" - Is Life Post NED Possible?
• ‎The Huffington Post's Jonathan Agin writes about the Orphan Drug Act, and his daughter - Cancer One War, Less Than One
• "Every day of my life since March 2005 feels like I'm living in some nightmare or dream but some moments take on an ever more intense flavor of 'surreality'." - Will: 84 days
• Doctor David always makes sense - Doctor David's Blog: "We need a better test"... or do we?
• ‎"I’ve challenged myself to not only continue the work of the Jeff Gordon Children’s Foundation and my efforts personally, but to do more because a child suffering from cancer is a child suffering from cancer. The location of the child or their skin color does not matter. They are all innocent children and they deserve the right to live, be healthy and enjoy life. That doesn’t mean we’re in anyway scaling back our support for pediatric cancer care and treatment in the United States. It means that we’re committed to doing more. I hope that you will join me." - Jeff from Jeff's Journey to Rwanda
• "And yet, more children still die of cancers than any other disease. When will be the right time to conquer the #1 disease killer of our children?" - Kathleen Ruddy, Executive Director, St. Baldrick's Foundation in The State of Childhood Cancer Research Funding
• "Although I will never know so many things, I am extremely grateful for her life and being reminded of her beautiful spirit everyday as we continue to help children with cancer through the Foundation. We’ve raised more than $50 million for childhood cancer research with the help of others who were inspired by Alex, and each year that we celebrate her birthday, we come closer to realizing my daughter’s dream of a day when kids won’t get cancer" - Liz Scott, Alex's Lemonade Stand Foundation, talks about Alex's 16th birthday and the 6th Lemon Ball where $700,000 was raised to fight childhood cancer - Our 6th Lemon Ball & My Alex's 16th Birthday

 

Barbie, the ACS and Childhood Cancer

An unlikely combo, but one that has generated quite a stir over the past month. Remember that December post about Mattel making a bald Barbie for a little cancer patient? Beautiful and Bald Barbie! Let's see if we can get it made (BBB) became a Facebook campaign that generated huge media attention with its goal of encouraging Mattel make a bald Barbie for children affected by hair loss, including childhood cancers. Here is an example news story from ABC - Support for 'Bald Barbie' Swells on Facebook. BBB recently meet with Mattel and recently reported they were encouraged by the meeting!

During that groundswell of attention, most reports were supportive. Yet, surprisingly, the American Cancer Society decided that they should weigh in on the Bald Barbie movement - Bald Barbie Demand is an Over-Reach. Incredibly, among other gems, they throw out: "Childhood cancer is exceedingly rare."  All we can conclude is that the ACS truly believes that because their contributions to childhood cancer research are just as "rare".

Well, the community had some thoughts for ACS and so did we here. Working Mother.com had some things to say, Bald and Beautiful Barbie Campaign Movement vs. ACS, Mary Tyler Mom wrote about it Barbie v. Cancer and, frankly many members of the community, you, stepped up and protested ACS’s characterization of childhood cancer. It got quite heated and the ACS responded with a post from a more senior employee whose child fought childhood cancer. The back and forth continued, with one consistent theme being the community questioning the ACS’s lack of funding for childhood cancer research.

The updated notes from ACS indicated that in 2011 it contributed $8.8 million to childhood cancer research as compared to $11.9 million in 2010, as we've been told in previous communications. Bottom line: if you want your dollars to go to childhood cancer related funds, you know that ACS is not the answer.

 

Yesterday, 9:30 am Super Bowl Sunday, ESPN pre-game story on Tom Brady, he’s mic'd up, fired up, yelling to this teammates, and losing (maybe?) - "We've GOT to work harder! We've GOT to do more!"  We like that idea and of course, his spirit. But, last night, around 13 hours later, New York Giants coach Tom Coughlin accepted the Lombardi Trophy for the New York Giants.

Thank god that's over! Now Tom can get back to his important job of supporting families and children impacted by childhood cancer. Check out The Tom Coughlin Jay Fund Foundation to assist children with leukemia and other cancers and their families by providing emotional and financial support to help reduce the stress associated with treatment and improve their quality of life.

Mr. Coughlin, thanks for all you do and congratulations on coaching the New York Giants to a victory in Super Bowl Number 46.....(there are no coincidences).

 

And finally…. we believe that thanks should go to Grey's Anatomy for highlighting childhood cancer in a recent episode! This quote from Grey's is THE most "liked" post ever here at PAC2......

"This is not general surgery on a miniature scale. These are the tiny humans. These are children. They believe in magic. They play pretend. There is fairy dust in their IV bags. They hope, and they cross their fingers, and they make wishes, and that makes them more resilient than adults. They recover faster, survive worse. They believe."

 

Thanks PAC2 for believing, and for all you do!

PAC2