Dear PAC2,

 

welcome to the February 2014 PAC2 update sharing news and information around the childhood cancer community.   It's already past the Ides of March, and we wanted to quickly share two recent news stories....

 

#SaveJosh - Josh is a 7 year old who has already fought cancer 4 times.  After a BMT he developed a virus at St. Jude and needed a drug, under Compassionate Use, to live.  The drug company, Chimerix, is currently conducting trials and claimed they dropped out of the Compassionate Use program 2 years ago and needed the inventory for the trial.  Well, Josh needed the inventory to live.  Family reps reached out to us and the Coalition Against Childhood Cancer and others, and soon a highly public campaign was on to get Josh the drug, along with backroom negotiations to make it happen.  Originally seen on CNN Sunday night, the campaign picked up speed and soon, it was announced that Josh would get his drug.   Great news for Josh.  Forbes does a good writeup - Company Makes Drug Available To Ailing Boy Following Public Outcry.

But why do we have to do this every time this comes up?  #Seekingbetterways.  Let us know if you know anyone who fits one of these descriptions: 1)  If you know someone who is currently seeking compassionate release through a pharmaceutical company and the FDA and wouldn't mind talking about it,  or, 2)  If you know someone who lost a loved one because they were denied a compassionate use drug.  Email info@peopleagainstchildhoodcancer.org.  Thanks. PS - Chimerix Stock Price to the left - guess which day they agreed to give Josh the drug?

 

Story #2 deals with Gabriella Miller and the passage of the Gabriella Miller Kids Research First Act.  Although unfortunately she's not here to, (what's the right 'celebration'), nod her head in acknowledgement, Congress took her advice to 'stop talking and start doing' with the passage of the Act which will direct to research $126 million over 10 years from a rarely used fund used to finance national political conventions. The money will go to the NIH common fund, supporting research into childhood cancer and other pediatric diseases and developmental disorders.  (so now the childhood cancer community will advocate for funding from the Act, along with other childhood disease groups).  A step forward, and: Thank you Gabriella from kids everywhere.  

 

Research News

In case you missed it, childhood cancer is getting less and less rare. The American Cancer Society now estimates that nearly 16,000 kids under 20 will be diagnosed with cancer in 2014, and that the risk of being diagnosed with cancer before age 20 has increased to 1 in 285.  Childhood Cancer: Getting Less and Less Rare

Pediatric gliomas--radiation reduces long-term survival rates.  Long-term survival among patients with most common childhood brain tumor is high; lower if treatment included radiation   Brain Tumors Research

Catalog more cancer genes or study the most common ones already identified? That's the question at the end of the Cancer Genome Atlas project.  Cancer is a disease of genes gone wrong. When certain genes mutate, they make cells behave in odd ways.  Cancer Gene Atlas 

How can we get pharma working together this way on childhood cancer?  Drug companies have always been bad at collaboration. That’s changing.  New Drug Company Partnership 

Kids Rock Cancer--Maryville University.   The music therapy program at Maryville University has a program that's been offering its services to local pediatric hospitals since November 2009. It's called "Kids Rock Cancer" and helps children manage the physical and emotional effects of a cancer diagnosis and blood disorders.  Music Therapy 

Hey moms and dads, just an idea....This year, instead of 1-800-Flowers.com or chocolates from Amazon.com on Valentine's Day, how about a small donation to Project:Every Child. In Project:Every Child, every type of childhood cancer, no matter how rare, will be studied by the more than 200 pediatric cancer programs of The Children’s Oncology Group, as we lead the way towards better cures. #childhoodcancersucks    Project Every Child 

If you are interested in attending the NCI meeting on pediatric cancer drug development (2/21) in person, please RSVP by emailing Nichelle Lewis at: scottnic@mail.nih.gov or by calling (301) 594-9896.  NCI Meeting Information 

Dogs & kids with cancer....bet we know what the findings will show!   Clinical Trial Launches to Document Efficacy of Animal-Assisted Therapy for Child Cancer Patients and Their Families.  Trial 

Five months ago, 20-year-old Milton was diagnosed with cancer for the third time in his young life. He was given less than a 20% chance of surviving. But today he is expected to live a long, healthy life because of a new T-cell therapy treatment at Seattle Children’s that reprograms T-cells to detect cancer cells and destroy them.  Timeline Photo 

We went to the moon and tamed the atom through science and engineering working together. Check this out, a physical barrier restricting movement of cancer cells, no drugs-----"One factor that makes glioblastoma cancers so difficult to treat is that malignant cells from the tumors spread throughout the brain by following nerve fibers and blood vessels to invade new locations. Now, researchers have learned to hijack this migratory mechanism, turning it against the cancer by using a film of nanofibers thinner than human hair to lure tumor cells away."  Hijacking Tumors 

Not really pediatric, but this young adult who battled cancer in college has some very interesting research aspirations:  Kathryn Hunt, Unlocking Cancer's Ancient Past

Steps forward with NCI?

The National Cancer Institute (NCI) held its 64th Meeting of the Director’s Consumer Liaison Group (DCLG) on Friday, February 21, 2014 from 9:30 a.m. to 4:00 p.m. on the National Institutes of Health (NIH) Campus in Bethesda, MD.  Video Cast – Barriers to Drug Development in Pediatric Cancer  Attendees included Children’s Cause for Cancer Advocacy, Kids v Cancer, Coalition Against Childhood Cancer, American Childhood Cancer Org, The Evan Foundation, Max Cure Foundation, St. Baldrick's, PAC2, CureSearch, On Friday February 21, the Children’s Cause for Cancer Advocacy (CCCA) was proud to participate in a full day meeting at the National Cancer Institute (NCI) with the Director’s Consumer Liaison Group (DCLG).  The entire day was devoted to barriers to drug development in pediatric cancer research — a first for this advisory board.  Overview blog 

Remember, the NCI directs less than 4% of its budget to childhood cancer; which in turn is the leading cause of death by disease...

Drug Shortages

The Working Group on Chemotherapy Drug Shortages in Pediatric Oncology has issued a consensus statement that focuses on the "core ethical values and practical actions necessary for a coordinated response to the problem of shortages by institutions, agencies, and other stakeholders."  Blueprint For Action May Prevent Drug Shortages 

"According to the FDA, the daunorubicin shortage has two primary causes: 1) Only two U.S. companies manufacture the drug, and one of them — Ben Venue Labs of Bedford, Ohio — went out of business in late 2013, and 2) The sole remaining U.S. manufacturer — Teva Pharmaceuticals of North Wales, Pennsylvania — announced a product recall due to “potential presence” of “particulate matter” in the drug.  FDA Shortage Update

 

Suvivorship News

"Researchers surveyed internists -- primary care doctors for adults -- across the country and found that 51 percent of respondents said they had cared for at least one childhood cancer survivor. Among those doctors, 71 percent said they had never received a treatment summary for these patients.  Possible Gap Seen in Adult Care for Childhood Cancer Survivors 

Dear Ms. Michelle Obama, please consider this: Children with ALL are at risk of becoming overweight/obese early in treatment. Increases in weight are maintained throughout treatment and beyond.  Predictors of being overweight or obese in survivors of pediatric acute lymphoblastic leukemia (ALL)   Obesity and Survivors 

Thanks for Friends of Jaclyn Foundation, five-year-old Brooks Russell is the newest member of Lipscomb’s baseball team.  Lipscomb baseball team signs 5-year-old as part of his fight to beat brain tumor   Brooks is a Signed Bison 

A great survivor story. Alex Nelson has become an elite swimmer, breaking records as she goes!  'I didn't want it to define her' - Hartland sophomore leaves cancer, competitors in her wake.  Kidney Cancer Survivor 

Team USA sled hockey goalie overcame childhood cancer and amputation. #childhoodcancer #olympics   Steve Cash Story 

Awareness News

"A new license plate in Illinois to raise money for childhood cancer research will go into production if at least 1,500 orders are made."  License Plates to Raise Money for Childhood Cancer Research 

World Cancer Day--Join hands and voices across the world: debunk the myths.  Debunk the Myths 

Thanks Jimmy Kimmel Live, and of course....Max.  MaxLove Project Video

Education

Registration is now open for NMTRC's FREE childhood cancer symposium coming this April. Knowledge is power and Collaboration is the Key. Join them and hear right from the doctors working in the lab what they have learned and what they are looking forward to.  NMTRC Symposium 2014 

Hey PAC2. Would you help our friend Katie out with this survey of parents of cancer kids? It's part of her dissertation at the University of Southern Mississippi and she would be honored to include your experience to better help families dealing with such a difficult situation in the future!  Survey Link 

My name is Natasha and I am a graduate student studying to become a psychologist. I have a very close friend who was diagnosed with cancer in her 20's, a grandmother that passed away from cancer, and another friend who was diagnosed in his early 20's with a brain tumor and ever since I have wanted to do something to help!...  Doctoral Study

Many times, like all of us, grandparents of kids with cancer are left feeling like they don't know what to do. Now, many of our friends and members of the Coalition Against Childhood Cancer (www.CAC2.org) are banding together to make a difference.  Grandparents in Action 

Cool Colleges

Casey, Toomey Introduce Resolution to Recognize The Pennsylvania State University’s THON for Another Record-Breaking Event.  he Dance Marathon, commonly referred to as THON, raised more than $13.3 million this year, shattering the previous fund-raising record by almost $1 million.  THON 

Dance Marathon--Iowa City!  Dancing To Help Fight Pediatric Cancer   Annual Marathon

Way to go UVa! Thank you!  Dance Marathon Celebrates Raising $60,000 for UVA Children’s Hospital.  16th Annual Dance Marathon 

Dancing at The Ohio State University! Thank you!  Buckeyethon Raises $767,277.78 to Fight Childhood Cancer.  Charity Dance Marathon 

And, courtesy of our buds at The Andrew McDonough B+ Foundation...Notre Dame!

Cool Companies

Our friends at Northwestern Mutual discuss Corporate Social Responsibility. Thanks for all you do NM!!  Women in CSR: Nichole Lecher 

Huge shout out to our friends at Dave & Buster's for raising more than $950,000 for Make-A-Wish in their second year! Since 2012, Dave & Buster’s has raised more than $1.6 million for our wish kids. Thanks for all you do to help grant wishes!  Make-A-Wish Funds 

How many Presidents and CEOs of multi-billion dollar corporations do YOU see saying things like "Hyundai Hope On Wheels is one of my favorite aspects of being with Hyundai"?  Helping Kids fight Cancer 

God speed Jeff…PAC2 chats with Jeff Gordon about the Jeff Gordon Foundation and it’s work.  Interview 

Cool Collaboration

We love it when our friends get together: Thank you Alex's Lemonade Stand Foundation and I Care I Cure Foundation!  Successful Collaboration: Leveraging an Established Grant Review Process   CAC2

Gretchen Holt-Witt - Cookies for Kids' Cancer, Nancy Goodman - KIDS V CANCER, Barbara Canales - The Ready Or Not Foundation, Frank Kalman - Kids' Cancer Research Foundation, Lisa Tichenor - QuadW Foundation. #payingitforward #childhoodcancer   Everyday Heroes Video-Reader’s Digest 

Hugely exciting news from our buds at KIDS V CANCER who are excited to announce that on 14th, Valentines Day, the FDA awarded the first Creating Hope Act voucher! The voucher was awarded to BioMarin for Vimizim to treat Morquio A Syndrome.  Creating Hope Act Voucher 

"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

Writings

"But my family, we need no days set aside to be “aware” of cancer."  We are not strangers. We are intimate companions.  For two years, cancer has been an integral part of our family, as familiar in our home, and as permanent, as the walls themselves. It has come bursting through the front doors of our minds, planted itself deep into our beings, its boorish heavy roots pushing forcefully into the soft soils of our minds.   Cancer Daze    

"Pediatric cancer is real. It's a hard pill to swallow that something so awful can happen to our little babies, teens, and young adults. Although today is Donna Day, every day we raise money towards research and a cure is a Donna Day."  Donna Day 

Relapse in the midst of blogging:  Mitchell has relapsed.  The leukemia is back and is in 89% of his bone marrow. We will begin chemo all over again. The goal is to get him into remission and then he will have a bone marrow transplant. Guest blogger  Meg McElwain needs Prayers for Mitchell 

This fraternity of Cancer Avengers was wise in ways beyond their years. When faced with the courage and bravery of these little superheroes, I had to give myself the "Put your big girl pants on" speech more than once.  An adult in the pediatric ward: What the littlest Cancer Avengers taught me          

16-year-old volunteer Erin Shaw submitted this cartoon to commemorate Valentine's Day. It shows a teen named Harold giving a box of candy to a girl at school. Harold is impressed with himself even though there is only a small piece of candy in the box. This situation summarizes the current federal funding levels for childhood cancer research.  Truth365 Timeline Photo 

A momcologist story:  It's every parent's worst fear, lived out by Charlotte mom, Meg McElwain, as her son, Mitchell, was diagnosed with pediatric cancer at just 3 months of age. Join Meg as she courageously shares her family's story in a eight-part guest blog series, Witness to a Miracle: Mitchell's fight against pediatric cancer. 

The blanketAnother day – another child taken from his family by cancer – and I just sit and await to discover that I am once again wearing the invisible lead weighted blanket of depression.   Blog-Will’s Dad

Fundraising

St. Jude Thanks and Giving® Campaign Raises More Than $97 Million During the Holiday Season... Funds for Finding Cures and Saving Kids 

Hey Nebraskans, can you help?--"One Lincoln, Nebraska family is reaching out to state senators in hopes of bringing more attention and more dollars to pediatric cancer.  $1.8 million of the state's cash reserve could go to starting a pediatric cancer research organization at the University of Nebraska Medical Center if a bill passes in the legislature."  Cancer Research Bill 

Each year, Evan and Joshua Greenberg, two enterprising Mamaroneck youths, look for new and creative ways to innovate their annual hot cocoa stand in Scarsdale that honors the Pediatric Cancer Foundation. This year has been the best year yet.  Tech, Social Media, Help Scarsdale Cocoa Stand Take Off 

Boy collects sneakers to help kids with cancer.  Max Cure Foundation--On the Today Show! Way to go Max!  Hope To It Video with Max                                                           

"That was eleven years ago and the Ricci family has brought 5000 to 7000 toys a year to the children suffering from Pediatric Cancer at Alfred I. DuPont Hospital for Children in Delaware."  Young survivor Brings Smiles to Cancer Patients 

PAC2 is honored to have helped bring the original 46 Mommas Shave for the Brave together. Since, they've raised over $1 MILLION and, now, gone international!! Rock on Mommas!  Head Shaving 

Fashion Funds the Cure!  Youngsters modeling at Fashion Funds the Cure earned thunderous applause from the 800-strong crowd absorbing sobering but inspiring statistics. In 11 years since the Pediatric Cancer Foundation asked cancer patients to be in the fashion show, 10 are in treatment, 70 no longer battle cancer, 15 passed away and $3.65 million has been raised for clinical trials and research, including $450,000 on Saturday night.  Pediatric Cancer Fashion Funds 

Fairfax High School DECA students hand-delivered over 100,000 petition signatures to Senator Mark Warner. The petition asks Congress and the President to make childhood cancer a national priority.  A Voice 4 Children! Fairfax HS DECA Students Storm DC!    

Save the Dates!

Save the Date #1! As part of the mission to start a national movement, CureFest for Childhood Cancer will be held on Sunday, September 21 in Washington, DC at 9 a.m. This year's event will feature a National Walk from the White House to the Capitol. There will be activities, entertainment and a speakers. Last year 50 foundations participated but 100 or more are expected for 2014.

The event is open to all, childhood cancer orgs and families both are encouraged to attend!  Thank you to TheTruth365, Arms Wide Open Childhood Cancer Foundation and Journey 4 A Cure for their leadership for CureFest 2013.  

This year, along with PAC2, the Coalition Against Childhood Cancer will be helping, and bring more orgs and advocates into the mix.  Please e-mail info@curefestdc.org if you plan to attend or need more information. Stay tuned for more details in the coming days. — in Washington, DC.

Save the Date #2! - The Alliance for Childhood Cancer, is pleased to announce that this year's Childhood Cancer Action Days in Washington, DC is scheduled for June 23-24, 2014.


More than 140 advocates participated in Childhood Cancer Action Days last year with 145 pre-scheduled meetings with legislators and staff. As a result
of the advocates' efforts, new cosponsors were added to each legislative bill impacting childhood cancer and 17 new House Representatives joined the Congressional Childhood Cancer Caucus.


Once again, organizational members of 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. The Alliance goal is to provide the childhood cancer community - parents, children, and others with the opportunity to visit their Representatives on Capitol Hill and advocate for the important childhood cancer issues currently before Congress.

That's it. If you've got news give us a shout at info@PeopleAgainstChildhoodCancer.org! 

Thanks PAC2 for all you do.

PAC2

 

 

 

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