People Against Childhood Cancer (PAC2) Update

People Against Childhood Cancer Update (PAC2)

PAC2 (People Against Childhood Cancer) is my “go-to” source for information and community. Here’s the latest update. There is some GREAT information in here. 
Take the time to read through this and check out the links.
~Mindi
Momcologist 

Hi PAC2,
We’ve been getting ready for the March 18 workshop in Washington DC. Fellow advocates and representatives from 25 childhood cancer organizations will be attending. We feel humbled and look forward to working with these incredible people as together we work to advance the search for the cure to childhood cancer. We can’t wait to write the report to share with you. Here’s a bunch of childhood cancer news over the past few weeks….

Research & Treatment

code cracked for most common pediatric brain cancer – a major research accomplishment from collaborative funding by Alex’s Lemonade Stand Foundation, Pediatric Brain Tumor Foundation, Stand Up To Cancer, Children’s Brain Tumor Foundation and others.

Our friends at Solving Kids Cancer hosted a free-webinar on January 25 for families and researchers to learn about all of the different oncolytic viruses in clinical trials for children in 2011. All four principal investigators of the 5 different oncolytic virus trials will be speaking. This online parent/researcher forum can be viewed here.

Article by NCI on the recent research into medulloblastoma. Seeking Better Treatments for Brain Tumors in Children NCI rep is quoted as saying: “These three studies are at the forefront of a large body of genomics-based research that, in the next few years, will redefine how medulloblastoma is diagnosed and how new treatments for patients with medulloblastoma are developed.”
Everybody liked this one. Verification. PTSD shows up in parents of kids with cancer.
The saying is “follow the money”. If true; this is good news: “can reduce cancer growth in models of AML (acute myeloid leukaemia) and neuroblastoma (a childhood cancer)”. Sareum Holdings shares soar after latest success in pre-clinical cancer drug studies
Commentary on an article from the Childhood Cancer Survivor Study. Interesting in that if you read the Excess Mortality post (http://bit.ly/ExcessMortality); and wondered what it is for other cancers…..”Women with breast cancer do not appear to have an excess risk of mortality” – Sobering realities of surviving Hodgkin Lymphoma
“The advances come thanks to the parents of young cancer victims, who donated their deceased children’s brain tumors for research in the hopes of sparing other families the pain they had experienced.” – Stanford discoveries offer first new hope in three decades for lethal pediatric brain tumor – Office

Sometimes fertility is the price. Sometimes the price is much higher for the 2 of 3 survivors who face secondary cancers, major organ damage and an 8 times higher risk of death – all from the ‘cure’ of current chemo and radiation. Is Future Fertility The Price Paid For Beating Cancer?

 “This recombinant protein not only shows selective binding to leukemia cells but also causes their rapid destruction within 24 hours. Perhaps most importantly, CD19-L killed even those leukemia cells that were highly resistant to both standard chemotherapy drugs as well as radiation.” Scientists Bioengineer a Protein to Fight Leukemia
 
Some research findings from St. Jude Children’s Research Hospital – “Green said the findings provide insight into the mechanisms at work in neuroblastoma and other tumors” Protein identified that serves as a switch in a key pathway of programmed cell death

Advocacy

Protesters worldwide….revolution in the streets….YOU can be part of the cure childhood cancer revolution…head to DC to join CureSearch in March with other childhood cancer advocates. Share your story. Make your voice be heard. Click Children’ s Cancer Awareness and Advocacy Day

Our friends at KIDS V CANCER need grassroots advocates in PA and MI to fight for the Creating Hope Act of 2011 to provide incentives to big pharma to do research into childhood cancers. This is your chance to join the revolution…read about the act here.



Awareness

Calling all videographers! Alex’s Lemonade Stand Foundation is holding the Oscar’s of the kid cancer world. Prizes include an Ipad and Flip cameras. And of course the grand prize is knowing you’re fighting childhood cancer….The Lemonade Video Awards


The “Making a Difference” segment on NBC Nightly News with Brian Williams featured The Jeff Gordon Foundation! Godspeed Sunday Jeff, and thanks for all you do to support the kids! Jeff works with CureSearch, Pablove Foundation and others. Jeff on NBC Nightly News with Brian Williams – Jeff Gordon Children’s Foundation

Did you know that Feb 15 was International Childhood Cancer Awareness Day!…..(not a lot of fanfare eh?) This is COG Chair Peter Adamson’s paper from the International Society of Paediatric Oncology meeting in Oct. 2010 – visit SIOP Boston 2010 New Drug Development for Children with Cancer

John and Scott, the founders of Solving Kids Cancer are featured in the Wall Street Journal. Three years work, $7 million raised, and 9 therapeutic development projects ongoing. “Setting a deadline of ensuring survivorship for every child with pediatric cancer by the year 2015″….You just gotta “like” Solving Kids’ Cancer! Read the story here – Donor of the Day: Dads’ Cancer Fight – WSJ.com

Support

Free webinar from The National Children’s Cancer Society on transitioning off treatment. Tuesday, March 15, 2011 at 1:30 PM – Optimizing the Life-Long Health of Childhood Cancer Survivors: Transitioning Off Treatment. They also gave away $75,000 in scholarships to kid cancer survivors last year. You need to apply by March 30 for this years. Good luck!

Our friends at The Andrew McDonough B+ Foundation Being Positive! Driving for a good cause at Rolex Grand Prix of Miami – Motor Sports – MiamiHerald.com

Fundraising

Download the latest app and you can virtually shave your head to support our friends at the St. Baldrick’s Foundation as they raise funds for childhood cancer research! Oh, by the way, they also have raised over $9,000,000 this year.

Our friends at Bear Necessities Pediatric Cancer Foundation raising $480,000 in one night at the Bear Tie Ball! “Tropicure” Bear Tie Ball benefitting Bear Necessities is a record breaker!

Writing

We love common sense talk that raises the temperature in the room: “If a coast guard helicopter was called out into the ocean to rescue ten people on a sinking boat, one of whom was a child, you know that he or she would without a doubt be the first one in the basket up to the helicopter. So why then does that same human response not apply here? ” (more) – Will’s Dad

We did the follow-up on the excess mortality chart we saw at the Ped Cancer Caucus. Discussed are the findings of an article from the Childhood Cancer Survivor Study and what it means to the lifetime outcomes of kids. It’s sure not something we wish we had to follow up on… Excess Mortality – People Against Childhood Cancer

An ER doc, a 3-time shavee, contrasts St. Baldrick’s Foundation and Susan G. Komen for the Cure as he writes on their joint decision for him to shave again after his wife was diagnosed with breast cancer – Movin’ Meat: The Cause of My Life

Not exactly writing, but Bob Schieffer talking after he visits Texas Children’s Hospital and talks with Dr. ZoAnn Dreyer, noting that government funding continues to be cut in the area of childhood cancer research. Not much to be proud of there…Bob Schieffer on government spending priorities – CBS News Video

This from our friends at KIDS V CANCER: “DID YOU KNOW? Research and development for new drugs from pharmaceutical companies comprises 60% of funding for adult cancer drugs and close to zero for childhood cancers. However, the NCI spends 96% of its budget on adult cancers and only 4% of its budget on children’s cancers.”

Yeah, we drone on about it all the time, but here’s some thoughts on pediatric cancer research from Samantha Jean Elisabeth. Almost 18, she’s warred with childhood cancer since 2003. She says:”I’m furious and I won’t stop being angry until everyone knows about childhood cancer and how truly widespread and devastating it is.” Sammi’s thoughts on research for pediatric cancer!

News

Turns out, Sammi is right: funding is a huge issue. February saw the publication of ‘The State of Research into Children with Cancer across Europe – New Policies for a New Decade’ by the European Society for Paediatric Oncology. Primary finding: Funding is too low and dependent on short-term grants to be able to sustain this improvement in the long-term. Here’s some other quotes:   “Funding for childhood cancer research is too low and too dependent on short-term grants to maintain the improvements in survival rates” “there’s little collaboration between North America and Europe”, “little support for young scientists to attend courses which could help the level of knowledge across Europe”.

Here are some stories on the report: European Commission : CORDIS : Childhood cancer research needs urgent boost, study shows, Childhood cancer research in danger | e! Science News, The State of Research into Children with Cancer across Europe – New Policies for a New Decade. You can download the report here.

During the recent revolution in the streets in Egypt, crowds grew and it got a little worrisome at a the premier children’s cancer hospital in Cairo. Ahmed said that the hospital would be saved. “All of us here,” he said, “would lay down our lives to help these children.

Dr. Ann Meadows, a long time pioneer of childhood cancer research was honored in February at Children’s Hospital of Philadelphia after 38 yrs of service focused on long-term health of childhood cancer survivors. Thank you Dr. Meadows, and best wishes. Read the story here.


Sad but true. Excess mortality is real. Thank you for all you did Kim. – Kim Hill dies at 44; woman’s childhood cancer battle inspired creation of Ronald McDonald House
….”The date of Liam’s Memorial Service and Celebration of Life is set for Valentine’s Day. It seemed only appropriate that the little boy who represented nothing but love is honored on the day of love.” – Gretchen Witt, Mom to Liam and Founder of Cookies for Kids’ Cancer. Our deepest sympathy’s…

Visit People Against Childhood Cancer at: http://curechildhoodcancer.ning.com/

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About Mindi Finch

Living with Magnificence. Kicking Childhood Cancer's Ass.
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