PAC2 Update - News from around the childhood cancer world - June 2013

Dear PAC2,

It has been too long since we've compiled a PAC2 Update but June was such a busy and important month we wanted to get some news out.  In June the childhood cancer community showed that it will continue to work together and demonstrated just that at two major events -- The Alliance for Childhood Cancer held the 2nd Annual Childhood Cancer Action Days in Washington DC and the Coalition Against Childhood Cancer held its Inaugural meeting, also in DC!

Advocacy

On June 18, 2013, more than 150 childhood cancer patients, survivors, families, and advocates stormed Capitol Hill for the 2013 Childhood Cancer Action Day to meet with members of Congress and their staffs and share their support for important childhood cancer legislation. Action Day is coordinated by the Alliance for Childhood Cancer. No matter where you are in the country, we hope you will join this effort for children with cancer by sending a message to your members of Congress (and ask your family, friends, and colleagues to do the same).  Join the advocates and encourage members of Congress to:

  • Co-sponsor the Caroline Pryce Walker Conquer Childhood Cancer Act Reauthorization in the House and Senate;
  • Co-sponsor the Childhood Cancer Survivors’ Quality of Life Act, H.R. 2058, in the House;
  • Increase appropriations for the National Cancer Institute and the lifesaving childhood cancer research it funds.

You can still advocate virtually by clicking Virtual Action Day.

Later in June, Congressmen Van Hollen (D-MD) and McCaul (R-TX) deserve our thanks for introducing reauthorization legislation for the Caroline Pryce Walker CCCA!

This story on the DC Candlelighters Childhood Cancer Foundation is typical of what many groups, like St. Baldricks, CureSearch, B+ Foundation, ACCO, NCCS, Pediatric Brain Tumor Foundation and others were up to on the Hill advocating! - Lobbying for Children’s Cancer Treatment

But then again, you don't need to be professionally trained in lobbying to make a difference. Eight year old Zoe could probably give us all some lessons! Congrats Zoe! - 8-year-old leukemia survivor has her own style of lobbying

Awareness

This is pretty cool news - The Battleship New Jersey; America's most decorated Battleship will be illuminated with gold lights for the entire month of September!  Our Congrats to "A Day of Yellow and Gold to Fight Childhood Cancer"!

Help Kick Off Childhood Cancer Awareness Month with CureFest, this September 1, 2013 in Washington, DC from 2 PM to 6 PM.  This event is by and for the entire childhood cancer community and is a great opportunity for us to speak with One Voice. All foundations and families are welcome to attend!  This kid-friendly event will feature games, activities, face painting, moon bounces and more. The amazing Alvin Jones will be our master of ceremonies. Nicole Ricken will be coming from Chicago to perform a few songs. Our speaking program will be announced later this month. If your foundation would like to register for a table at CureFest please let us know. If you would like to lead a game, activity or have ideas for an activity or about the event we would love to have your help. To register or volunteer please contact donnaj4ac@gmail.com.

Three Emmy wins for The Truth 365 by the National Academy of Television Arts and Sciences - National Capital Chapter. This is small victory for our kids but The Truth 365 hopes (and plans) to leverage this into something much bigger!

Research and Treatment  

More evidence that we need to do better--with treatments and with survivor follow up - Deficits in Physical Function Among Young Childhood Cancer Survivors

Solving Kids' Cancer has funded a phase 1 clinical trial at Baylor College of Medicine and Texas Children’s Cancer Center using an immunotherapy approach to treating neuroblastoma.  Phase 1 trial uses enhanced T cells to treat neuroblastoma - Baylor...

More on personalized medicine from Time - No more chemo: Docs say it's not so far-fetched

Pre-clinical trail progress on rhabdo - "results show that silencing a specific gene in the flies prevented healthy cells from becoming cancerous and turned cancerous rhabdo cells back to normal! He was able to replicate the same results in human tumor cells." - Fruit Flies For Cancer: Medicine’s Next Big Thing?

This is a short video describing Dr. June and his team's serial killer t-cell treatment that helped two-time relapsed leukemia patient Emma, find remission. - Doctors Take A Long Shot And Inject HIV Into Dying Girl.  The Reason Why Will Amaze You.  100% totally true story

This is from TEDx Waterloo. Mark Greenberg is a pediatric oncologist at Sick Kids who also lost his own child to cancer. He asks and answers the question about whether we as a society have a medical understanding of the difference between curing and healing.  The Difference Between Curing and Healing: Mark Greenberg at TEDxWa...

Writing & News

Morgan is 29-years old, living in LA, female, wife,  mother to two spectacular pups named Leo and Lily, lover of ‘90s pop and actual, physical mail, hater of mornings and refilling ice cube trays. She is also an adult survivor of childhood cancer. Read her incredible description of her worldview. - It Happened to Me: I Am An Adult Survivor Of Childhood Cancer   

Summer reading? A "fantasy novel is borne out of a real-life tragedy, loosely based on the experiences of an amazing 11-year-old boy who discovered magic and fantasy while going through cancer treatment."  M.J. Logan Releases Debut Novel 'Maurpikios Fiddler'

A topic none of us wish to contemplate: pediatric hospice.   End of Life Equality in the Childhood Cancer Community

We Must Stop Turning Our Backs on Children's Cancer - "When doctors told my wife and I that our soccer-playing, Harry Potter-reading 7-year-old daughter Olivia had cancer, we were struck with panic, dread and challenges we never could have imagined. And once we overcame the shock, we were stunned to learn that children’s cancer is...."

Ways to live forever - CHOC Children's and World Wide Motion Pictures Corporation have partnered in a nationwide effort to raise awareness – and funds – for pediatric cancer through the award-winning feature film, “Ways to Live Forever,” which opens in select U.S. theaters this July 19th. Based on the acclaimed British children’s novel by Sally Nicholls, this heartfelt movie depicts the story of 12-year-old Sam and his best friend, Felix, who are bravely battling leukemia. In spite of the disease, the two boys embark on an inspiring mission to achieve their dreams, find answers to their burning questions, and grow up fast.

7-year-old girl who met Justin Bieber passes away, leaves family wi....

Every year, Memorial Sloan-Kettering hosts a graduation ceremony to celebrate the lives of all high school seniors that have ever been treated at Sloan.  Here is osteosarcoma survivor Alexandra giving this year's graduation speech . . . Because Cancer Never Stopped Us

 

Support & Info

Check out our buds at Camp Quality Ohio - We have our overnight camp this year from July 14-20 and we have openings left. If you know of any children with cancer in or near Ohio from diagnosis to six years out, please let them know of our opportunity. Everything we do is free to the kids and their families. We have a one on one adult match for each child at camp. We also allow two siblings to come for the first two years – www.campqualityusa.org

Thanks to our buds at Hyundai Hope On Wheels for the reminder about the great resource The Hope Portal managed by Children's Hospital Los Angeles, check it out at searchhope.chla.org

Thanks to the Tampa Bay Times for staying on top of their coverage of charities that use children and cancer (and other equally worthy causes) to rip people off. Here is their aggregated list of the to 50 worst charities in America -  America's Worst Charities

Sometimes cancer kids, their siblings, and their friends need something to laugh about. Llama Mama (Healing Through Humor) is a kid-friendly website focused on giving kids going through emotional trauma something to laugh about. Two Florida teenagers launched and maintain this website full of jokes, funny photos, and videos in response to the loss to cancer of the brother of one of them. Bookmark it and share it with your kids. - www.llamamamahaha.com

The ALSF Childhood Cancer Symposium is designed to be an educational resource, providing families with the opportunity to learn about issues and topics of treatment and beyond, while meeting other families in a group setting. This free event is open to all family members, patients and their siblings. Our 2013 Sessions:  Coping With Cancer, Dealing with Late Effects of Treatment,  Educational Challenges, Legal/Disability Rights, Parent Discussion Panel,  Teen/Young Adult Workshop (for teen/young adult attendees who are in treatment or survivors),  NEW THIS YEAR - Ambassador/Advocacy Workshops! If you have any questions about the 2013 Childhood Cancer Symposium, please email Shirley at Shirley@AlexsLemonade.org. August 3 at 10:00am, The Westin Philadelphia in Philadelphia, Pennsylvania

 

Fundraising

How amazing is this?? September is Childhood Cancer Awareness Month, and this year, the Good Cookies at ASICS are showing their support in a HUGE way. The company is launching a special GOLD collection (Gold is the official color of pediatric cancer awareness) in September, and a portion of all sales will go to Cookies for Kids' Cancer! Stay tuned for more details!

Two fast guys making a cool announcement. Jeff Gordon Children's Foundation will match any funds raised by folks, like Mini's Mission "Burn Rubber to Help Another", holding Kick-It kickball games this September! Visit Jeff and Kick It at - http://www.kick-it.org/jeffgordon

Our buds at Make Some Noise 4 Kids: Pediatric Research Foundation awarded $10k from NJ First Lady Christie and recognized for what we knew all along -- they are NJ Heroes!! Morristown cancer foundation awarded $10,000 state grant

Did you know our friends at Hyundai Hope On Wheels have awarded $975,000 in grants for childhood cancer...so far in June!?! - Hope On Wheels June 2013 Newsletter

MACC Fund gives its biggest gift yet--$10 million for the Children's Hospital of Wisconsin!  MACC Fund gives kids hospital $10 million

Craig Breslow's Strike 3 Foundation raising $ & Awareness! - Even on off day, Red Sox come together to support Craig Breslow, An...

Applebee's in New Jersey working with Alex's Lemonade Stand Foundation to try and raise $1.8 million in July! Alex’s Lemonade Stand Foundation Teams Up With Applebee’s Neighborh... -

Our thanks to Glaxo Smith Kline for investing in rare disease research!  GSK links with French venture firm to target rare diseases

Collaboration

On June 19, 2013, People Against Childhood Cancer (PAC2) joined with nearly 40 other childhood cancer organizations at the inaugural meeting of the Coalition Against Childhood Cancer (CAC2) in Washington, DC. We thank all the dedicated, creative and thoughtful individuals and groups that have made this possible after over two years of efforts.  About 70 people attended, representing over 40 childhood cancer groups.   The CAC2 Mission is shown to the right.

CAC2 will be a collaborative network of organizations and individuals supporting and serving the childhood cancer community and will ALWAYS put the kids first in everything it does. If your childhood cancer organization would like to be involved please email info@CAC2.org for more information.  Stay tuned for more info!

"A small group of thoughtful people can change the world. Indeed, it's the only thing that ever has." - Margaret Mead

Thanks PAC2 Members!

Any questions or comments, please contact us at info@PeopleAgainstChildhoodCancer.org

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From the Children’s Cause – thank you for including mention of the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act! We’d like to add much-deserved recognition to the Senate’s bipartisan leaders of this bill, Senators Jack Reed (D-RI) and Deb Fischer (R-NE). For more info on this legislation and its provisions, we invite folks to check out CCCA’s most recent online newsletter: http://www.childrenscause.org/newsletter-july2013#cpw_introduced.

Thanks Bob P. and the whole team for making this happen.

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