Dear PAC2,

Welcome to the PAC2 Update for July 2014 bringing you news from the childhood cancer world.   As always, if you have things to share please contact us at info@peopleagainstchildhoodcancer.org. 

JUST REALLY GOOD STUFF....

Dr. Jim Olsen of the Seattle Children's Hospital had trouble raising funds for his trials using scorpion venom from the usual sources, so he turned to patient families.  One Doctor’s Quest to Save People by Injecting Them with Scorpion Venom: Doctor’ Quest 

Laurie Orloski explains the Coalition Against Childhood Cancer: "If you are not familiar with CAC2, it is an organization formed in 2013, or should I say a collection of childhood cancer organizations (and people like me), providing opportunities to form a unified front for such an important cause that does not get enough attention.  Want to Make a Difference 

And, this just in from our buds at Kids V Cancer: GREAT NEWS on the Creating Hope Act – Vouchers Sold! The Creating Hope Act of 2011 provides market incentives to pharmaceutical companies to develop drugs for pediatric rare diseases. “Our hope was that companies would use vouchers just as Sanofi and Regeneron have,” says Nancy Goodman, who founded Kids v Cancer and championed the inclusion of the special voucher provision in the 2012 FDA Safety and Innovation Act.  "The voucher was the first to be issued under the pediatric incentive program, and also the first to change hands." Drug Firms buy 67.5 million Voucher to speed FDA Review  and more in this Business Week article.   Click the pic to watch Nancy explain more in a Fox News interview.

LONG TERM EFFECTS

We'd say there is much more than a 'growing body of evidence', but appreciate the PBS News Hour story on long-term health effects that childhood cancer survivors face.  Pediatric Cancer Patients Face Lifetime Health Issues

For childhood cancer survivors and their families, this new study is very good news, indeed – because it shows that many of them in the low-risk category can safely reduce the frequency of their heart screenings, with a significant reduction in accompanying costs. Good News 

New work to develop a practical means to preserve the reproductive capacity of pre-pubertal male cancer patients.  Frozen mice testicles offers fertility hope 

Short, simple read, one of thousands of examples, which demonstrate the commonly quoted "80% survival rate" doesn't tell the whole story.  What Are the Factors That Affect Survival and Relapse After Local Recurrence of Osteosarcoma?  Long Term Prognosis Poor 

Another reason an "80% survival rate" is not good enough:  "Median age at diagnosis was 6 years and median follow-up was 8.5 years. The 5-year globe conservation rate was 90%. Ophthalmic dysfunction was present in 79% of patients.  Long-term evaluation of orbital rhabdomyosarcoma in children 

Another Catch-22.....kids with ALL who had minimal residual disease (MRD) following therapy showed better outcomes with augmented post-remission therapy. But....they experienced higher rates of "adverse events".  MRD may guide augmented post-remission treatment in pediatric ALL 

Sometimes you wonder why they even do the study.....Key findings included: Childhood cancer survivors are hospitalized more often than children who haven't battled childhood cancer.   Research to identify strategies to prevent and manage survivors' health problems in outpatient setting.  Risk of hospitalization for survivors of childhood and adolescent c... 

“You save someone’s life at 15 but they’re dead by the time they’re 50?  You have a problem there.”  UTHSC Researchers Study Pediatric Cancer Treatment Consequences in Adult Survivors.  Study of Childhood Cancer Survivors and Heart Problems 

Adult survivors of childhood cancer with a history of ifosfamide or cisplatin use should pay close attention to the potential development of chronic kidney disease.  This oncology report looks for nephrotoxicity in adult survivors of childhood Cancer.  Study 

RESEARCH & TREATMENT

"In this large pediatric study, adding EMEND to a standard regimen for prevention of CINV resulted in significant reduction of emetic events." Translation: kids undergoing chemo puke less with it.  Merck Reports Results 

"A team of surgeons from Hospital Sant Joan de Deu, the Barcelona Children's Hospital, have succeeded in removing a previously inoperable tumour from a five-year-old boy with the help of 3D printing." Over 10 days, the surgeons then rehearsed many surgeries on the 3D printed models, and when the day of surgery came, they were able to remove the tumour successfully.  Breakthrough

A University of Pennsylvania-developed personalized immunotherapy has been awarded the FDA’s Breakthrough Therapy designation for the treatment of relapsed and refractory adult and pediatric acute lymphoblastic leukemia (ALL). The investigational therapy, known as CTL019, is the first personalized cellular therapy for the treatment of cancer to receive this important classification.  Engineered Cells Therapy 

Despite what the FDA reports--Sulfamethoxazole (SMX/TMP) (Bactrim) Injection (Resolved)--there still seems to be a shortage and difficulty with Bactrim availability in some areas of the country.  FDA Drug Shortages 

James R. Downing, MD, took over as CEO of St. Jude Children’s Research Hospital in mid-July.  Downing has conducted extensive work related to genomic sequencing, overseeing the Pediatric Cancer Genome Project.  St. Jude appoints new CEO

"Our findings could be relevant for research on other cancers, as we discovered that those genes had been activated in a way that cancer researchers don't usually look for in solid tumors."  Cancer by remote-control: Overlooked DNA shuffling drives deadly paediatric brain tumour.  Featured Research 

Cancer sickened at least 35 children in parts of Clyde, Green Creek Township and Fremont areas, and some died. State and federal agencies have not been able to find the cause of the cluster.  Whirlpool Park owners join cancer cluster lawsuit 

Neurath is partnering with experts in Oregon and England to study whether there is a link between radon and osteosarcoma.  String of Childhood Cancer Cases Set to Begin 

Part of a new clinical trial in pediatric oncology, a little Pomeranian named Swoosh is being tested along with cancer-stricken children, in order to determine how animals can help in the management of ill patients.  New Study on Dog therapy Video 

Because to not to is unimaginable: "The researchers found that there was poor parent-provider agreement regarding prognosis and goals of care. Parents were significantly more likely to report that cure was possible."  For pediatric patients with advanced cancer, parent-provider concordance is poor regarding prognosis and goals of care.  Survey Results 

"With the help of a significantly improved analysis method, which is based on an extremely sensitive DNA sequencing technology, the researchers have now succeeded in identifying a number of specific genetic changes that influence the risk of reoccurrence."  DNA Technology 

Scientists have made a breakthrough in understanding the cause of rhabdomyosarcoma.  The discovery could lead to the development of improved therapies to treat the disease and other types of cancer in future.  Breakthrough! 

CHILDHOOD CANCER INCIDENCE - up, up, up....

Childhood cancer incidence continues to increase in the US (an annual increase of 0.6% since 1975), and now 1 in 285 children will be diagnosed before age 20.  And, it's not only here in the US….. 

Cancer incidence patterns among children and adolescents in Taiwan from 1995 to 2009: A population-based study also shows increases.  Stats Just Released 

The incidence trends of childhood cancer in Beijing, China showed a significant increase from 2000 to 2009, especially amongst girls.  Beijing, China Stats Released from Big Study

Ireland: "Time-trends in incidence were not clear-cut but there was a slow but non-significant increase for childhood cancers as a whole."  Cancer Trends

 

AWARENESS

We hope you can join us at CureFest for Childhood Cancer in our Nation's Capitol on September 21 to take a stand against childhood cancer. This will be a great event with dozens of childhood cancer organizations joining together and will follow on the heels of the Congressional Childhood Cancer Caucus (see below for great news on that!).  If you'd like to help, you can support the Fundraiser Online Auction or simply register to attend.

Tattoo Tom never stops! For the kids!  'Tattoo Tom' finishes 100-mile race for children with cancer. Tattoo Tom Mitchell is the Springfield, Virginia man known for his skin markings -- and for running this four-loop course with training partner Adam Katkhouda. He is doing this for 100 heart-wrenching reasons: each mile is for a different child who is battling cancer or has died from cancer.  Thanks Tattoo Tom 

Compassion: What the world needs more of.  Solana Beach church campers and volunteers raise funds to battle childhood cancer.  For the 10th annual KidsGames June 23-27, a summer camp held at Solana Beach Presbyterian Church, 550 children and more than 350 teen and adult volunteers raised money for Max’s Ring of Fire, which benefits pediatric cancer research and clinical trials.  Max’s Ring of Fire 

Justin Bieber’s brother and sister support the Hospital for Sick Kids in Toronto, and Bieber chimes in.  Jazzy and Jaxon Bieber are raising money for The Hospital for Sick Children.  Rev It Up 

Roger Daltrey performed The Who hits and special guest Joan Jett and The Blackhearts rocked out in a concert to benefit CHOP!  

Good stuff.... Three Girls in Cancer Photo That Went Viral All in Remission.  Photo: “Sometimes strength comes in knowing you are not alone!” 

Stay tuned for more from our buds at Gold in September!  Mission – AWARENESS - Lots of Gold in September

Help Ben onto the cover of Runner's World Vote every day.  Ben is a 12-year-old childhood cancer survivor who loves to run with his dad. Let's help Ben land the cover of Runner's World magazine and share his story with the world.  Vote For Ben

"And our dream is to see a cure for pediatric cancer."  Houston family about to walk coast to coast in girl's memory.  Raising Awareness of Childhood Cancer 

Cincinnati Bengal's defensive tackle, Devon Still's, four-year-old daughter Leah was diagnosed with Stage 4 Neuroblastoma cancer on June 2.  Fight of his Life for Leah  bengles

The "Gold in NASCAR" campaign needs your/our help.   Gold Out September!

Cancer nonprofit becomes personal when founders' kids diagnosed.  The couple started Soccer For Hope before they even had any kids and then lost two to cancer.   Real Personal

Danny Nickerson is 5-year-old boy with DIPG.  All he wanted for his birthday was birthday cards.  He got over 100,000.  Danny Nickerson,  P.O. Box 212  Foxboro, MA 02035.  Birthday Help 

"As we all begin to finalize plans for Childhood Cancer Awareness Month this September, it is worth returning to Jay Scott's thoughts from a couple of years ago: if the country was more aware of childhood cancer after the awareness month, would they join us in the battle? Would you?  Are We More Aware?

He lost his battle with brain cancer on Friday. As his body was wheeled from the surgery room to harvest his organs, the medical team bowed to honor him and the lives he saved. "  An 11-year-old boy wanted to donate his organs so others can live after battle with brain tumor - Photo (Note: many PAC2'ers asked why they hadn't been allowed to donate their child's organs and the best we can answer is the story is from China.)

What would you do if you knew you were living the last year of your life? Until 20 is an inspiring documentary about James Ragan and his courageous quest to live a full and meaningful life. It's about feeling lucky about knowing that your life is almost over and making this your time to do something good, right now. "Wanting to live. Knowing you're going to die. And trying to die with some kind of quality and dignity." James Ragan, 20 years old, diagnosed with cancer when he was 13.   Until 20 - Teaser of the Independent Film.  Video

 

STORIES AND WRITINGS

"On this day, August 1, 2014, I remember my daughter Alex and thank her for giving me the gift of continuing her mission.   Alex, you are my hero, and I miss you."  Adding Meaning to a Life Taken Too Soon: Ten Years Later - Jay Scott, Alex's Lemonade Stand Foundation

They say necessity is the mother of invention.  We wish it hadn’t been necessary but Kylie, a rhabdomyosarcoma cancer survivor has created an IV backpack to help children with cancer who are receiving Chemotherapy.  11yr old Cancer Survivor's IV Backpack Invention

A young boy battling brain cancer has been named the "nation’s youngest special sheriff deputy” in Huntington County, Indiana.  Wyatt Schmaltz, a 3-year-old with stage 4 neuroblastoma, was dubbed “Deputy Wyatt” by County Sheriff Terry Stoffehel in a ceremony Wednesday.  Deputized 

Always good stuff from Pat!  This week the phase II preventative trial of DFMO in patients with high risk neuroblastoma that is remission has opened and enrolled its first three patients. This study will enroll 64 children who have fortunately managed to get their neuroblastoma into remission.  After the Landscape 

The unexpected path.  This video by Emily and the unexpected path she found herself on after being diagnosed with cancer at the age of 10. She made it so people will understand her....... A Life Interrupted: Finding My Voice VIMEO 

Childhood cancer survivor and Boston Mayor Marty Walsh shares his story in this blog from Boston Children's Hospital.  ‘Proud to be a Cancer Survivor’.  Inspirational Life

We say no one wants to be a member of the club, "Parents of Children with Cancer," but the other club, "Parents of a Child Who Died" is worse.  The Hard Truth About Staying Married After Losing a Child

FUNDRAISING

Those of you who have followed PAC2 for a while know we have a special place for the 46 Mommas.  Now, for the fifth year in a row, they gathered, this time at Fenway Park for a shave. They have now raised over $1.5 million for St. Baldrick’s and childhood cancer research. Congratulations and thank you to the 46 Mommas Shave for the Brave

"Through a variety of innovative fundraising activities, Carnival Cruise Lines has raised more than $5 million for St. Jude Children's Research Hospital® for the hospital's many lifesaving pediatric cancer research and treatment programs." Carnival Cruise Line Fundraiser

Coming soon to a sporting goods store near you: until this limited-edition line of shoes and accessories from ASICS who will give $10 for every purchase of shoes to Cookies for Kids’ Cancer during the month of September, up to $150,000.  Thanks ASICS 

Chevron Phillips Chemical has donated $100,000 to Texas Children's Hospital-The Woodlands. The sum will be paid over five years, at $20,000 per year.  Chevron makes record donation to Texas Children's hospital.  Thanks Chevron!!    

In the pics below, you will see three great companies supporting our buds at Alex's Lemonade Stand Foundation: Auntie Anne's, Rita's and Applebee's.  We'd like to extend a huge thanks to each of them for their continued support of the fight against childhood cancer!!Summer's still here and before you head to the beach pick up some new Hari Mari flip flops and help the fight. Thanks to Hari Mari for its support of Children's Cooks Hospital and the fight against childhood cancer.  Flops Fighting Cancer

Always thankful for our friends at Hyundai Hope On Wheels.... Hyundai’s Hope on Wheels Shows How Great an Automaker Can Be.  Thanks Hyundai

Braden's Hope for Childhood Cancer gave a $100,000 grant to Dr. Kathleen Neville at Children's Mercy Hospital in conjunction with Dr. Giselle Sholler at the Helen DeVos Hospital in Grand Rapids, Mich. The second grant of $83,236 was given to Dr. Douglas Myers of Children's Mercy Hospital and Dr. Thomas Yankee from the University of KansasMedical Center.  Grants

Dr. Eugenie Kleinerman - Head, Division of Pediatrics, MD Anderson Cancer Center - "Curing childhood cancer is the equivalent of curing breast cancer in terms of productive life years saved."  Importance of NCI Funding

Jeff won at Indy on Sunday...but we think this is way cooler.  Jeff Gordon of the Jeff Gordon Children’s Foundation will match up to $150,000 of funds raised with Kick It! Thanks Jeff! To locate or organize an event in your community, visit www.kick-it.org/jeffgordon

Chris Peacock, who heads the North of England Children’s Cancer Research charity, survived a Wilms’ tumour in his kidney when he was just four years old in the late 1970s.  His charity is now funding a state-of-the-art resource where researchers and clinicians can advance their work to develop new treatments with fewer side effects."  NECCR Chairman & Childhood Cancer Survivor

St. Baldrick’s Foundation Granted more than $24.7 Million for Lifesaving Childhood Cancer Research in its Summer Grants.  Thanks St. Baldricks!!  Check out the video below to watch researchers learn that they have received funding - the pediatric oncologists weren't expecting this great news and have some great reactions.

ADVOCACY AND RELATED

This is great news to help bring awareness and recognition of the tragedy of childhood cancer: Rep. Michael McCaul and Rep. Chris Van Hollen, the co-chairs of the Congressional Childhood Cancer Caucus, are very pleased to announce that Dr. Francis Collins, the Director of the National Institutes of Health (NIH), will deliver the keynote speech at the 5th Annual Childhood Cancer Summit on Friday, September 19, 2014!  Happy Fourth of July!

The FDA posted its Strategic Plan for Accelerating the Development of Therapies for Pediatric Rare Diseases, on its website:  A Blueprint for Helping Children with Rare Diseases.  In its new blog, Children's Cause for Cancer Advocacy takes a closer look at the FDA's report and strategic plan on accelerating the development of pediatric rare diseases, including its key objectives.  FDA’s Report on Pediatric Rare Diseases 

News from last month's Action Days in DC from Children's Cause for Cancer Advocacy: "As a result of the community's coordinated efforts, 15 more members of Congress have become co-sponsors of the Caroline Pryce Walker (H.R.2607) Conquer Childhood Cancer Reauthorization Act"   CCCA Advocacy 

Childhood Cancer Awareness Month is right around the corner and Joe at The Nicholas Conor Institute has compiled a list of upcoming events in DC!   September in Washington

EDUCATION

Pablove Foundation’s Childhood Cancer Symposiums bridge the information gap by putting parents in the same room as the world’s leading experts. The result is a two-way conversation between medical professionals and patient families. Parents are empowered with knowledge while doctors and nurses find themselves in an environment where collaboration and innovation are just a conversation away.

Pediatric sarcomas make up approximately 15 percent of all new childhood cancer diagnoses. The 2014 Symposium will focus on the subset of pediatric soft tissue sarcomas, the most common of which is rhabdomyosarcoma. Leading scientists and clinicians from North America and Europe will discuss cutting-edge research in the field and set the tone for scientific progress and collaboration to understand the biology and improve the outcomes for pediatric soft tissue sarcoma over the next decade.

International Think Tank – Friday, November 7, 2014

On Friday, November 7, a group of international experts on pediatric soft tissue sarcomas will participate in an invitation-only workshop on paratesticular rhabdomyosarcoma, followed by a Think Tank on pediatric soft tissue sarcomas. Dr. David Malkin will kickoff the day by delivering the George Donnell Society Lecture on Li-Fraumeni Syndrome at the Children’s Hospital Los Angeles Pediatric Grand Rounds. This event is invite-only. Please contact Community Affairs Director Megan McMillan at megan@pablove.org for more information.

Pediatric Soft Tissue Sarcoma Symposium – Saturday, November 8, 2014

On Saturday, November 8, we will open the doors to parents, caregivers, survivors, and medical professionals of all fields. Our full day of expert presentations, Q&A panels, and networking opportunities will inspire learning at all levels. Click here to register.


That, again, is a busy month.  In our humble opinion we'd say that over the past six years there has been a HUGE increase in activity; awareness is increasing, fundraising events are larger and ongoing on all year long, corporate sponsors are #SteppingUp, and the results of everyone's advocacy efforts are bearing fruit, and it's all a direct result of the efforts of the folks and organizations we have the honor of telling you about each month.   We extend our thanks and gratitude to each....

But kids still get cancer. Kids still die every day. So, like always, Today We Fight!

Thank YOU for all you do!

PAC2

To stay up to date with the latest happenings “Like” the PAC2 Facebook page and follow us on Twitter!  Thanks PAC2!

 

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