After four years of chronicling events, we are struck by the shear increase in the volume of stories (increased awareness), the increased levels of funds being raised and the increased levels of corporate America sponsorship. So, while Emerson did say "No member of a crew is praised for the rugged individuality of his rowing;" today we take a moment to share some some heart rendering stories and huge accomplishments by the "crew." Thank you all for all you do!!
This video from Seattle Children's Hospital was a highlight for us, with over 2.2 million views so far (increased awareness!). If you've been there, you will recognize it. If you haven't, here's a glimpse into it - the incredible spirit of incredible children....
Lots of exciting news from our friends at CureSearch in the Spring Newsletter....like $1.2 million in Young Investigator Grants focused on the high risk/poor outcome cancers!!! - Spring 2012 News from CureSearch
In his own words, Dick Vitale: "Sarasota was the sports capital of the world, and it all benefited pediatric cancer research. We netted a record amount, over $1.6 million, as the Sarasota Ritz-Carlton ballroom was packed on a very special evening." PAC2 Addendum (according to another article): the $1.6 million does not include an anonymous half million dollar donation during the dinner. - Dickie V Gala raises more than $1.6 million
Our friends at the Pablove Foundation are excited to announce the Pablove Across America 2012! Here's where they are riding this year. In the past they have ridden over 6,000 miles and raised over $1.2 million for childhood cancer research. For more info: http://pablove.org/paa
Congratulations to our friend Zafar Brooks, honored by PR News as a CSR Professional of the Year for his work for Hyundai Hope On Wheels. In 2011, Hope On Wheels donated $20 million to pediatric cancer research, its largest donation year to date.
You know how we feel about collaboration....but did you know that at least 16 foundations in the DIPG community are working together as the DIPG Collaborative? Created in 2011, the DIPG Collaborative's mission is efficiently funding and inspiring diffuse instrinsic pontine glioma cancer research in the hopes of finding a wider cure for cancer. Click to view all the great orgs involved!! - DIPG Collaborative
Researchers trying to reduce the multiple, serious and sometimes deadly side-effects that pediatric patients can develop later in life as a result of their treatment got a $12-million boost Wednesday from the Canadian government. - Childhood cancer research gets $12M from Ottawa
Money and cancer. This time it's not the same old combination. Today the Sohn Conference Foundation announced the speakers for its 17th Annual Sohn Investment Conference. Funds raised from the conference are donated to charities researching the treatment and cure of pediatric cancer and other childhood diseases; over its history, the event has raised more than $20 million for these causes….more.
Advocacy & Legislative
"Change does not roll in on the wheels of inevitability, but comes through continuous struggle. And so we must straighten our backs and work for our freedom. A man can't ride you unless your back is bent." - Martin Luther King, Jr.
Godspeed to the hundreds of advocates who will hit the Hill in DC next week at the Alliance for Childhood Cancer sponsored Childhood Cancer Advocacy Day on June 5th. Stay tuned for updates! - Alliance for Childhood Cancer - Home
On May 24, in a 96-1 vote, the Senate passed the FDA user fee legislation (Senate bill, S. 3187, the FDA Safety and Innovation Act). This bill calls for the FDA to hold a public meeting to examine ways to encourage and accelerate the development of new therapies for pediatric rare diseases with a report to follow. The House is expected to vote on their version of the FDA user fee bill soon. - Senate Inches Closer To Passage Of FDA Reauthorization Bill
Only about half of prescription drugs have suitable safety or dosing data available for children. Across the board, we need legislation to increase pediatric clinical trials and require that information is added to labeling. - Drug Labels Often Lack Pediatric Information
Remember Taylor Swift and childhood cancer patient Kevin McGuire? He invited her to prom, she couldn't make it but invited him to the CMA awards. Taylor has selected our friends at the Children's Neuroblastoma Cancer Foundation as her charity for the CMT Country Music Video Awards. For every category that Taylor wins CMT will make a donation to CNCF. She was nominated in 3 categories. You can go to the link below to view the categories and vote. You have to register on the site, just so you are aware. Make sure you vote for her in each category and tell your friends, family, co-workers, business associates to do the same. Vote for Taylor Swift!! - http://www.cmt.com/cmt-music-awards/categories.jhtml
Joe McDonough founder of The Andrew McDonough B+ Foundation describes the process of reviewing requests from families seeking support: "Every Friday, Katie Wilson and I review Family Assistance Program applications. Each week, we usually review somewhere around 30 applications. Reading these applications would make you cry. I could write about every one of these kids and their families, but there's not enough room on the website, and to be honest, your emotions would be pulverized and I fear that you would never return to this site. It's a balancing act of letting you into this world of childhood cancer while not scaring you away."
American Childhood Cancer Organizaton is taking Times Square! Until July 15th, millions of visitors to Times Square will see a rotating childhood cancer awareness message once per hour. The campaign is located on the 26 ft. X 20 ft CBS "Super Screen" at 42nd Street between 7th and 8th Ave., in the heart of Times Square Plaza.
We point out that Pfizer's stock price was unchanged after the announcement, again showing that the market for childhood cancer drugs is too small to be a profitable endeavor for big pharma--which is why they need the incentives included in the Creating Hope Act, right?
In May hundreds of docs, researchers, parents, advocates and tech folks (that know what the cloud is) met at the NMTRC Symposium, sponsored by Dell Services, for one purpose: BEAT neuroblastoma. You can watch the symposium by clicking thru....NMTRC Symposium 2012
Cincinnati pediatric oncologist, Evaline Alessandrini, wants to reduce the time from patient arrival in the emergency department to the administration of antibiotics for pediatric cancer and bone marrow transplantation patients with fever from 140 minutes to less than 90 minutes. Her system cuts through the red tape and makes the inevitable trips to the ER more bearable and safer for kids with cancer. - ED Prearrival Plans Cut Time to Antibiotics for Cancer Kids
Chase Meacham is not only a childhood cancer survivor and a college scholarship recipient, he has the wisdom to realize that survivorship is a journey that lasts a lifetime. Here's his advice for navigating college, presented at the National Childhood Cancer Society's Beyond the Cure Scholarship banquet. - A College Guide for Childhood Cancer Survivors
As if the grueling treatment regimens weren't enough, a new study shows that "compared to their siblings, survivors [of childhood cancers] were more likely to have scarring and disfigurement on their head, arms and legs later in life. And adults with those traits had more depression and a lower quality of life, on average." - Childhood cancer effects may linger in adults
“People tell me all the time that they look up to me, and I help them with a lot of things. I appreciate it, and I’m glad I can serve as that. But I say, ‘If you were going through the same thing, you could be just as strong.’”--Holly Fryar, high school senior, homecoming queen, soccer team captain, liver cancer fighter. - The Rocky Mount Telegram
A couple new reports show that we spend $2 billion annually to treat kids with cancer and $20 billion annually to treat adults with cancer. So it seems that our docs, nurses, and hospitals are doing everything humanly possible for the kids, and that more investment into childhood cancer research might be a bargain; economically and ethically. - Findings from the Report on Pediatric Cancer Hospitalizations, 2009.
12-Year-Old Boy Made Honorary Marine Before Succumbing To Cancer-Related Infection, Local Marine Stands Guard At His Hospital Door Entire Night Before He Passed Away…
12-year-old Cody Green has always admired the strength and courage of the Marines. At 12:35 Saturday afternoon, it was the Marines admiring the strength and courage of Cody. Cody had leukemia since he was 22 months old, but beat the disease three times. Although he was cancer-free, the chemotherapy lowered his immune system and Saturday afternoon, he died from a fungus that attacked his brain. Members of the Marines decided to step in and do something. “They decided Cody, with the strength and honor and courage he showed through the whole thing, he should be a Marine,” said Cody’s father David Snowberger. Cody was given Marine navigator wings and was made an honorary member of the United States Marine Corps. For one Marine, that wasn’t enough, so he did even more. “The night before Cody passed, he stood guard at Cody’s door at the hospital all night long for eight hours straight,” said Snowberger.
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