Dear PAC2,

we've lagged far too long with PAC2 updates and present the June 2014 update below.  In June 2014 the childhood cancer community took a giant 'step' forward with the implementation of a community-wide campaign to ask Congress to #StepUp and increase funding for childhood cancer.  This campaign was in support and conjunction with the annual Action Days held in Washington DC, where more than 250 advocates met with their congressional reps to campaign for increased funding for childhood cancer research under the Alliance for Childhood Cancer

The Alliance, the Coalition Against Childhood Cancer (CAC2) and numerous other childhood cancer groups and individuals participated in the #StepUp campaign.   While we don't have the analytics, we'd say hundreds of organizations were posting, tweeting and otherwise shouting: #StepUp!  Combined of course with the advocacy and shouting of the thousands of individuals, parents, survivors and family members who 'get it'; we continue to makes our voice stronger and louder and more effective.  A huge thank you to all who participated in the #StepUp campaign!!  As a community we WILL make this happen.....

#StepUp Campaign

June 2014 was the launch of a coordinated campaign within virtually the entire childhood cancer community to ‪demand that Congress #‎StepUp and increase NCI funding for childhood cancer research. The campaign was being coordinated through the combined efforts of many in the childhood cancer world......BUT WE STILL NEEDED YOUR HELP!!!  STEP UP CAMPAIGN 

  • Posting to Twitter on your own? That’s great! Please use the ‪#‎StepUp hashtag so we can track our success. 
  • Thanks to Children's Cause for Cancer Advocacy for explaining ‪#‎StepUp and the menu of options to participate.  GREAT JOB 
  • So proud and honored to be part of the childhood cancer community fighting together for more funding for childhood cancer.  Hey Congress! 
  • Why we need to ‪#‎StepUp.  A Letter to Myself: What I Wish I’d Known About Childhood Cancer.  A Mom’s Thoughts
  • It takes less than 1 minute to tweet Congress: 1. Go here: http://www.soundoffatcongress.org/direct/nY2f  2. Enter your zip code  3. Type your message (add ‪#‎StepUp) or choose an auto-fill option  4. Your legislators’ Twitter handles will be added  That's it! So easy. 
  • Wondering what you can do to help the problem of so many childhood cancer and so little funding?  1) Help us virtually storm Congress: Ask your Reps to ‪#‎StepUp & support more funding for childhood cancer research.   2) Send an email to your congressional representatives asking them to support more funding. (http://www.house.gov Cure4Cam Post
  • Today is Day 4 of the Childhood Cancer community's ‪#‎StepUp campaign directed at Congress. Did you know that there are many childhood tumors with a 0% survival rate? Imagine... Kids who are kids one day and terminal cancer patients the next, with no treatment options to give these kids a chance at life. Status
  • Have you visited ‪#‎stepup yet? It will inspire you and give you chills to see everyone in our community who is stepping up. Add your message, your selfie, a link to you blog and tag it #StepUp. Make sure we are heard. One voice united against childhood cancer.  Campaign 
  • The TRUTH is we as a nation need to ‪#‎StepUp for ‪#‎childhoodcancer!  “Pretty good doesn’t cut it”…PAC2 PHOTO 
  • Coalition Against Childhood Cancer member Steve C explains why we need to ‪#‎StepUp and fund more childhood cancer research!  Thirty percent cuts to children’s cancer research? Unacceptable 
  • All of Me (John Legend cover) ‪#‎StepUp for Children featuring 6-year-old Lily Noakes and 14-year-old musician Emily Brennan.   Video for Step Up Campaign 
  • Kids cancers are different than adult cancers.  Kids are not simply small adults. They need targeted research for targeted cures. Tell Congress, “Step Up: More Funding for Childhood Cancer Research.”  Curing Childhood Cancer in the 21st Century:  It’s Time for a Kid-centric Approach.  Kid-Centric Targets 

ADVOCACY

  • This is an editorial by Peter Adamson, Chair of the Children's Oncology Group (COG) that appeared in the Cancer Letter on May 23 and discusses the National Cancer Institute's funding cuts for childhood cancer research.  A Near-Term Solution: NCI And COG Agree on Plan to Maintain Enrollment.  The Cancer Letter 
  • It's not cute, funny, heartwarming or endearing, just the truth:   Overall funding for the Children's Oncology Group through the National Cancer Institute has been poor and worsening over the last decade, falling by 30% in inflation-adjusted dollars.   This year's budget requires an additional substantive cut and is predicted to be even worse in the next budget cycle.  NCI & COG Agree on Plan 
  •  “It would be a shame if that meant that diseases that had stronger advocacy would be preserved at the expense of diseases without advocates,” says Clay Johnston, director of UCSF’s Clinical and Translational Science Institute. “We would all suffer from that.”  Advocacy’s Power and the Disease Olympics 
  • More Funding Not Less.  Thirty percent cuts to children’s cancer research? Unacceptable!  Cancer kills more kids in the U.S. than any other disease!  We need ACTION 
  • Dear Senators and Representatives, what if it was YOUR child or grandchild! Chances are 1 in 285 it WILL be before they turn 20.  Thirty percent cuts to children’s cancer research? Unacceptable 
  • In June more than 250 childhood cancer advocates are gathering in Washington, DC to receive informational training in preparation for hundreds of scheduled meetings tomorrow with legislators on Capitol Hill.  Action Day 
  • Sometimes there are special folks who become involved with our community who don't have a personal connection to a child with cancer, but who really "get it." Thanks Laurie Orloski.  Kids First--No Exceptions! Why I Care About Childhood Cancer. 
  • Kudos to our friends at Cure Me Too Childhood Cancer Foundation for helping bring kid's cancer to the table in California's Comprehensive Cancer Control Plan.  Biennial Stakeholder Conference.
  • As the NCI undergoes significant changes to its clinical trials program, funding for the Children's Oncology Group (COG) faces big challenges. Dr. Peter Adamson, COG Chair, has been at the forefront of negotiating solutions to a potentially devastating funding crisis and recently authored an update.  COG Funding 
  • Have you started your Faces of Childhood Cancer submission yet? The time is now!  2014 Childhood Cancer Action Day Announced!  Be one of the 250 advocates to take to Capitol Hill on June 24 as we ask Congress to support children with cancer!  CCAD

Coalition Against Childhood Cancer (CAC2)

In conjunction with Action Days and the #StepUp campaign, the Coalition Against Childhood Cancer held its Second Annual Meeting at the Microsoft facility in DC.  CAC2 is nearly 70 childhood cancer organizations working together to fight childhood cancer.  

The meeting kicked off with William Burns, Uncle to seven year old Josh Hardy, describing how the efforts of CAC2 members and others were instrumental in obtaining a drug to save Josh’s life when all other avenues had failed.   Learn more at Save Josh Hardy or read more in the attached file where William tells Josh's story.   Following that inspirational story, Joan Darling, Ph.D., Chair, Children’s Oncology Group (COG) Patient Advocacy Committee provided an overview of COG, including its history and financial history, as well as what the COG Patient Advocacy Committee does.  Dr. Darling has graciously provided a copy of her materials and left us with this quote:“It was once said that the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadows of life-the sick, the needy and the handicapped.” - Vice President Hubert Humphrey.

CAC2 was then honored to host a distinguished panel discussion on Barriers to Drug Development.  Panelists included Dr. Lee Helman, Dr. Malcolm Smith (NIH/NCI), David Arons (DCLG) and Dr. Jeffrey Skolnik (GlaxoSmithKline).  Special thanks to our Moderator – Gavin Lindberg, The EVAN Foundation.   Many topics were covered and it was agreed that advocates need to consistently raise their voices to highlight the lack of new therapies for kids with cancer as a priority.  

After lunch members split into breakout groups to network and exchange ideas on the 4 CAC2 pillars: Awareness, Advocacy, Research and Family Support.  We were then honored to host Rachel Stauffer (Diana DeGette (CO) and John Stone (House & Energy Committee staff, Chairman Fred Upton (MI).  They presented and discussed the Twenty-first Century Cures Initiative.   The overall goal of the new initiative is to learn how to accelerate treatment & cures in all patient populations.  The pediatric cancer community was encouraged to let the committee know our challenges in pediatric cancer treatment, and to correspond individually with suggestions and ideas.   Visit the website to learn more.

We were all grateful to have an informal session with Dr. Peter Adamson, Chair COG, who spoke to the CAC2 membership about advocacy, new developments in treatments and NCI funding problems.  As always, we thank Dr. Adamson for his continued support! 

Learn more about CAC2 at Coalition Against Childhood Cancer!

Awareness

  • Those are two very articulate and compelling spokespeople for children with cancer. Jeff Gordon and Carmen Diaz.  Video 
  • Thanks to Ogilvy Brasil!  Snoopy, Garfield, and Other Characters ‘Go Bald’ to Support Childhood Cancer Awareness.  Help for Social Stigma
  • Childhood cancer statistics can be confusing. Any statistics can hide or distort the truth, and even the statistics we trust may only tell part of the story.  Childhood Cancer - Long-Term Outcomes
  • Didn't we just say how amazing Alex's Lemonade Stand Foundation was this morning....again!  Photo 
  • Thanks for all you do to raise awareness of childhood cancer!   FedEx St. Jude Classic
  • Great news! The site for CureFest 2014 has been upgraded to the main National Mall near the U.S. Capitol!! Join us September 21 from 9 to 1:30 for this signature event.  Thanks
  • Team Will is riding their bicycles across the country from San Francisco, Ca to Margate City, NJ! Team will is Honoring two Childhood Cancer Survivors, Danny from Margate City, NJ and Kaden from San Francisco, Ca. The team will is stopping at 18 Hospitals along the way. This endeavor is to raise Awareness and funding of Team Will's Family Assistance Program.  Margate to welcome cross-country bicyclists, honor local boy 
  • How aware are you? This PAC2 survey is four years old now and, sadly, the only thing that's changed is MORE kids being diagnosed with cancer every year.....Survey: Kids With Cancer 
  • American Cancer Society at it again...“I was in shock when I heard they lost the funding. I was in tears. I felt like my child didn’t matter,” She's right, the kids matter for less than 1% of ACS funding.  Camp for Kids With Cancer Fights to Survive Funding Cuts 
  • We thank Toys ''R'' Us and Babies "R" Us for their continued support of the fight against childhood cancer and Alex's Lemonade Stand Foundation!!  Photo 
  • I am thrilled to announce our 16th year program is in full swing! Last month, we had a number of exciting announcements to share, including the selection of our two National Youth Ambassadors, Hyundai Scholar Hope Award and Hyundai Clinical Award recipients, a partnership with Michelle Williams, Project:Every Child, and so much more!  Hyundai Hope on Wheels May Update
  • Check out the list of companies that Alex's Lemonade Stand Foundation has engaged to help in the fight against childhood cancer.....Companies in the Fight 
  • Roger Daltrey interviewed by Esquire and explaining the importance of Teen Cancer America! Thanks for all you do Roger!! 
  • Hey guys, check out the Coalition Against Childhood Cancer and give us a shout if you have any questions! We'd love to chat about membership and working together to beat childhood cancer.  CAC2 
  • What kind of car are you going to buy?  Hope On Wheels is the united effort of Hyundai Motor America and its 820+ Hyundai dealers across the U.S. committed to helping kids fight cancer.  Thanks Hyundai   
  • 1 in 5 of the 5-yr kid cancer survivors die prematurely from cancer or effects of treatment. ‪  Childhood Cancer - Long-Term Outcomes 
  • The message of this post is thank you. Thank you for sharing, posting, tweeting and following. Thank you for spreading the awareness that our kids are being ripped off. You are what makes this work. Thank you, PAC2 members.  Thanks 
  • A special thanks to the folks at the Microsoft Innovation & Policy Center in Washington, District of Columbia for hosting the Coalition Against Childhood Cancer meeting.  THANKS 
  • Thanks to A.C. Moore for its continued support of Alex's Lemonade Stand Foundation!  Photo of Coupon 

Research & Treatment

  • ASCO highlights in pediatric cancer research center on collaboration.   Although overall age-adjusted death rates for cancer in the US have declined in the past decade, according to data from the American Cancer Society  (ACS) and the National Cancer Institute (NCI), tell that to about half a million people who will receive a cancer diagnosis this year.  The shock and emotional pain associated with the six letter word are devastating.   How Scientific Collaboration Can Improve Our Approach To Fighting C...
  • A cancer of the lymphatic system, Hodgkin lymphoma has a cure rate of over 90 per cent. However, its treatment has traditionally involved radiation to the chest, neck and armpit areas. Such therapy raises the risk of developing breast cancer in female survivors.  Catching breast cancer early in at-risk survivors of childhood Hodg...
  • An estimated 25 percent of children in remission from acute lymphocytic leukemia are missing too many doses of an essential maintenance medication that minimizes their risk of relapse according to this study.  One in four children with leukemia not taking maintenance medicatio... 
  • Let's hope (and advocate!!) that the National Cancer Institute will not cut research budgets and more studies like this are conducted and the discoveries brought to the bedside............"Quadrapeutics shifts the therapeutic paradigm for cancer from materials - drugs or nanoparticles - to mechanical events that are triggered on demand only inside cancer cells," Lapotko said.  Success Of 'Quadrapeutics' 
  • Every year U.S. News and World Report ranks hospitals and here is the pediatric oncology listing..... These are the 50 top-ranked pediatric cancer centers. Three-year survival, cellular transplant accreditation and infection prevention were among the kinds of data, collected from a detailed U.S. News survey of children's hospitals, that produced 83.3 percent of each hospital's score.  Top Ranked Pediatric Hospitals for Cancer 
  • Not exactly news, replicates a study from the Childhood Cancer Survivor Study, but used hospitalization data instead of self-reporting and finds “,,,,higher rates of hospitalization across most cancer types, but not for all cancers, which gives us clues as to which groups of survivors may need better surveillance in the long term.”  Increased Risk for Hospitalization 
  • Melbourne researchers from the Walter and Eliza Hall Institute have found that reactivating a gene called Pax5 could successfully treat leukemia by helping cancerous cells to resume normal development. ‪#‎StepUp so more research can be done to save kids!  GENE SWITCH 

Fundraising

  • Stephen Sutton was diagnosed with incurable cancer while studying for his GCSEs and soon began a campaign to raise £10,000 for the Teenage Cancer Trust. He documented his struggle for survival online and support poured in from all over the world; he raised £3 million before passing away earlier this month. Since his death, that figure has risen to over an incredible £4 million.   Two-day vigil 
  • $33,789,039 so far this year.....St. Baldrick's Foundation raises money to fund research to find cures for childhood cancer.  Great Job!
  • Touch A Truck is this weekend in San Diego, California. It's a fundraiser for childhood cancer. Every dollar raised at the event goes directly to support innovative cancer research.  6th Annual Touch A Truck, June 7, 2014 Qualcomm Stadium 10AM-3PM to help raise money for childhood cancer at the most kidtastic car show in America! 
  • Toby Keith’s Golf Classic Raises Nearly $1 Million for OK Kids Korral.  Thanks Toby Keith
  • About 40 Tampa Bay Buccaneers players and staff members shaved their heads as part of the Pediatric Cancer Foundation's fifth annual Cut for a Cure Charity Challenge to raise money to fight pediatric cancer and blood disorders.  Thanks Buccaneers 
  • Taylor Swift comes through for our kids yet again.  Taylor Swift’s Gift Will Bring High-Tech Music Therapy to Teens at The Children’s Hospital of Philadelphia’s Cancer Center.  $50,000 Donation supports specialized programming 
  • Our thanks to Brian Moorman's P.U.N.T. Foundation and the Buffalo Bills for helping the fight against childhood cancer. Brian is the Bill's punter and here's hoping he's less busy this year and his event is a huge success!  “We’re going to continue to raise funds”-JMS 6/2
  • Our thanks to Denny's for its support of the fight against childhood cancer and Cookies for Kids' Cancer!!  THANKS 
  • National Lemonade Days (June 6-8) is this weekend! There is still plenty of time to sign up to hold a stand or another kind of event - we love bake sales, car washes, yard sales, etc... too. It's free and easy to register.  Alex’s Lemonade Stand 
  • Eighth Annual Alex Scott Phone Bank Sets New Record With $2 Million Plus In Pledges For Pediatric Cancer Research.  Benefit-Alex’s Lemonade Stand Foundation 
  • Speaking of amazing....How To Touch A Truck Event – Max’s Ring of Fire 
  • Father's Day is coming so why not fight childhood cancer, too!  Shop at AmazonSmile through 6/15/14 and Amazon will donate an extra $5 to Solving Kids Cancer for each customer who makes an eligible purchase for Father’s Day!  In Honor of Dad
  • A Million Books for HOPE is a summer read-a-thon led by Hope Veazey and her sisters Joy and Peace. Hope is an 8-year-old girl from Northern Virginia with Leukemia.   Reading to Erase Canser by raising Funds for Research
  • Please take 10 seconds and click thru to Like ACME Markets and they will donate $1 to Alex's Lemonade Stand Foundation! Thanks ACME!    
  • Thanks to the guys from the New England Patriots for helping raise funds for One Mission!!  Patriots Bros Gronkowski, Edelman, Ridley Have Sunday Funday in Newport.  Tackling Pediatric Cancer at Kid’s Cancer Buzz-Off 
  • Jeff and his team at the Jeff Gordon Children's Foundation have kicked off a new weekly post on Kick-It!! Easy to play and Jeff will match funds you raise in September!  Kick-It Program 
  • Are you in Memphis, Tennessee, Little Rock, Arkansas or Mississippi? Can you help out Teen Cancer America and share your experience?  Donate as little as $10 and you have a chance to win your Ticket to Rise!  Space Trip 
  • Congratulations to the MACC Fund - Midwest Athletes Against Childhood Cancer, Inc.!!!  WOW! Funds for Pediatric Cancer and Blood Disorder Research ($50,000,000)

HOW TO HELP: CureFest for Childhood Cancer will be held in Washington, DC on September 21, 2014 from 9:00 a.m. – 1:30 p.m. The event includes both a festival and an organized walk in which the childhood cancer community and the general public can stand together as one voice against childhood cancer. Over 50 childhood cancer foundations will be in attendance, along with a captivating lineup of speakers and childhood cancer advocates. The walk, which is just under 3 miles, takes place on the National Mall and offers spectacular views of the city from the U.S. Capitol to the Lincoln Memorial.  Water will be provided along the route and light snacks will be provided at the finish line.  You can register here and help support CureFest by donating an item or participating in the online auction here.

Stories & Writings

  • You might want to comment on The Fault in Our Stars page?  Facebook Page
  • Alex's Lemonade Stand: Cole Fitzgerald Cole Fitzgerald, 10-year-old cancer survivor, becomes the new CEO of Rita's Water Ice for the day. Pat is also joined by Liz Scott and Jeff Moody.  CBS Philly Video Interview 
  • NYC Hospital Hosts Prom for Pediatric Cancer Patients.  Children battling cancer get dressed up and dance at Memorial Sloan Kettering Cancer Center.  THANKS 
  • Thank you Alex.   ‘Alex’s Lemonade Stand’ celebrates 10 years - Before dying of cancer at age 8, Alexandra Scott started a lemonade stand that today has become an international movement to put an end to the disease.  Alex’s Video 
  • Perspective on the new movie The Fault in Our Stars by John Green from Sabrina, a teen diagnosed with medulloblastoma in 2013.  Importance of Book to Cancer Patient 

Our huge thanks to the NHL and Tuukka Rask for everything you've done for Will.  Cancer patient has unforgettable time at NHL Awards

  • More perspective on the new movie The Fault in Our Stars by John Green from Hope, a teen who says ""My mom kept telling me to stop smiling when I was reading it, but a lot of stuff they talk about is extremely accurate to how a bunch of cancer kids feel."  Teen finds Hope in Face of Cancer 
  • And one more about The Fault in Our Stars by John Green that includes an interview with Lori Earl, founder of This Star Won't Go Out and mom of Esther Earl, the inspiration for the character Hazel:  Mother of Quincy Teen Who Inspired Fault In Our Stars Reflects on F... 
  • "Every year, Carpino and his family lobbied for Bon Jovi to make an appearance, and today that wish came true.  Jon Bon Jovi visits Woolwich cancer patient's fundraiser  
  • If you haven't already, please meet Esther Earl, inspiration for This Star Won't Go Out and the Hazel Grace Lancaster character in The Fault in Our Stars.  Meet The 16-Year-Old Girl Who Lost Her Battle With Thyroid Cancer —... 
  • Mother of Quincy Teen Who Inspired Fault In Our Stars Reflects on Film’s Release.  She was moved by the support from the audience during the premiere in New York.  Esther Earl’s Legacy 
  • The inevitable awkward conversation. . . The Grieving Parent and the Pressure to be Positive.  I’m the mother of two gorgeous girls. When my elder daughter, Natasha, was 7, she was diagnosed with a brain tumor. She passed away nearly five years later.   Awkward Moments  
  • “..he challenges us all to be strong and do more.”  Will’s Dad - Blog
  • One heroic youngster got the surprise of a lifetime on Saturday when his favorite rock star showed up at his fundraiser for pediatric cancer research.  Thanks Jon Bon Jovi 
  • But this post is the follow up we promised on one eye-catching chart they presented: excess mortality.  It sounded so horrible.  We wanted to give our understanding of it, and then look at the data in a different way.   We don't like what we see....Excess Mortality-A Post by AJ’s Dad
  • "Hemenway's references to treatable, curable pediatric cancers and the remarkable, indomitable kids who get them run the risk of narrowing that meager slice of the research pie dedicated to children."  Fault in Our Stars Critic Does Disservice to Kids With Cancer 
  • A new documentary on Alex starts airing tomorrow!  Alex's Lemonade Stand Foundation (ALSF) emerged from the front yard lemonade stand of cancer patient Alexandra "Alex" Scott (1996-2004). In 2000, 4-year-old Alex announced that she wanted to hold a lemonade stand to raise money to help find a cure for all children with cancer.  Documentary: 'Alex Scott: A Stand for Hope'
  • TT365, 1st Emmy of the Night! Do you have your priorities straight?  Three more Emmy® Awards for "The Truth 365! We are very honored to have now been awarded 6 Emmys in our first two years of existence.  TT365 Recognition 
  • We're so proud of these two young women and especially Mike, TT365, and the organizations that worked to make this film a reality. These generous people work every day of the year to give this gift to our community.  Film Success-TT365 

Thanks,

PAC2

"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has."

 

 

Views: 371

Reply to This

Coalition Against Childhood Cancer

PAC2 is proud founding member of the Coalition Against Childhood Cancer!

Photos

  • Add Photos
  • View All

Fundraisers

Videos

  • Add Videos
  • View All

© 2017   Created by AJs Dad.   Powered by

Badges  |  Report an Issue  |  Terms of Service