We were deeply moved by your letter and please accept our sincere sympathies for your losses – both of your parents, and of your son. I read your “Another Inconvenient Truth” piece, and the fact that AJ was an extraordinary young man is abundantly clear. I am a cancer survivor, having been diagnosed at age 30; but I cannot begin to imagine the pain endured by any parent who loses a child. On the issue of funding pediatric cancer research, we hear you and share your concerns. Stand Up To Cancer recognizes the critical importance of research to prevent, diagnose and treat pediatric cancers.

I’d like to provide some background on the process through which the Dream Teams were selected. Requirements included that the teams be comprised of expert investigators from different institutions and different disciplines, with the projects leading to patient involvement within a two-to-three year timeframe. In response to the “call for ideas” issued to the scientific community, we received very few pediatric concepts. In fact, only 3 of 237 submissions were for pediatric cancer research. The SU2C Scientific Advisory Committee, assisted by our partner, the American Association for Cancer Research, analyzed each proposal in a way that was rigorous, thorough and fair. In the final evaluation, the Dream Teams with the strongest chance of success were funded.

Please know, the Dream Team announcement was just the beginning of our work. We plan to make another round of 10 to 12 research grants this fall – Innovative Research Grants. In order to increase the number of applicants focusing on cancers that affect children, the SU2C Executive Leadership Council asked the SAC and AACR to issue a second call for ideas, this time appealing to the directors of major academic centers around the country that specialize in cancer research in both adults and children, asking them to make sure the individuals on their staffs doing the most promising research focusing on pediatric cancer applied. We’re happy to report that the number of pediatric submissions more than quadrupled. The SU2C Scientific Advisory Committee is in the midst of its systematic review of all submissions for these grants.

While it is true that children do not get many of the cancers specifically addressed by the initial Dream Team grants, four of the five Dream Teams are engaged in research that has a significant potential to impact a broad spectrum of cancers, including those which affect children. Researchers now believe that most or all cancers have some epigenetic basis, that all cancers shed circulating tumor cells very early in their history, that all cancers require specific nutrients and that the PI3 Kinase pathway or similar series of genetic events affect the development and growth of many malignancies. Improving our understanding of these basic biological and genetic mechanisms will lead to new methods of detecting cancers early, deciding on effective treatments, monitoring those treatments and, perhaps being able to identify individuals of all ages who are at risk for specific cancers.

So the work of the current Dream Teams that it relevant to children is not about “down-sizing” treatments; rather, it has the potential to develop approaches and therapies that will lead to truly personalized medicine -- individual profiles that will allow for tailored therapies, regardless of the age and tumor type of the patient. It is the hope of everyone involved in this research that these new approaches will significantly reduce the short- and long-term effects of cancer treatments that take such a heavy toll on young survivors.

One final and important point is that Stand Up To Cancer is an on-going movement. We expect to make more Innovative Grants next year, and continue to raise funds so we can make additional Dream Team grants. We also continue to generate awareness about cancer’s impact and the need for more research. We would be delighted to work with People Against Childhood Cancer and other organizations focused on pediatric cancers, for example, in highlighting that September is Childhood Cancer Awareness month on our website. Please feel free to contact me directly at xxx/xxx-xxxx to talk about this idea, or other ways in which we might collaborate.

Again, thank you for getting in touch with us. I hope I have provided some insight. We intend to continue our work until there is an end to cancer of all types, affecting children as well as adults of all ages.

Cordially,

Diane Balma
Stand Up To Cancer Executive Director

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This is the letter that Ms. Balama responded to:

Dear Stand Up To Cancer:

I am writing to comment on the initial funding distributed by the Stand Up To Cancer organization. I have followed your initiative from inception, and been very interested to see the actual funding granted.

I am simply an interested American. An average guy. I've lost both my Mom and Dad both to cancer. They both had good long lives. Still, very sad. But I have to tell you, the pain and sadness of losing my 14 year old son Alex to childhood cancer simply overwhelms those losses. Orders of magnitude. Like an atomic bomb compared to a spark. When your parents die you are an orphan, when your spouse dies you are a widow. But there are no words for parents that lose a child. And, it’s a lifelong sentence.

So, as I watched The Show that night, I was touched many times. I know Julian’s Mom and Dad. And, subsequently, parents of other children who’s story I heard or saw that night. That’s why I was hopeful that the funding from SU2C would reflect the sadness of the stories I saw that night. Unfortunately, from the initial funding, Epigenetic Therapy, Women's Cancers, Breast Cancer, Tumor Cells Chip, and Pancreatic Cancer seem to be the first winners. Which is sad.

Childhood cancer is considered "rare". Rare has two meanings in this case: Happening to your child or someone else’s. One in 300 children will be diagnosed with cancer before age 20. That’s 46 kids every school day. 12,500 diagnosed every year. 3,000 kids, or 1 in 4 or 5 will not survive.

It is the #1 killer disease of our children today, more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined. Each year 35-40,000 are in treatment. Childhood cancer has a huge societal impact - 180,000 potential years of life are lost to it EVERY year! Does that sound RARE? Do you KNOW what a “Potential Year Life Lost” is? Have you considered it in your funding matrix?

We all know awareness and funding for childhood cancer is woefully inadequate. So we looked on hopefully as Drew and Pearce and Julian were featured. Praying, hoping, wishing that SU2C would not be another American Cancer Society or LLS. That it would not use these children for sympathy, only to turn their back on them when it came time to distribute funds.

Right now, two major fundraising organizations for childhood cancer research are St. Baldrick's Foundation and Alex's Lemonade Stand. They rely on parents to shave their heads or sell lemonade to raise money for childhood cancer research. To save the lives of the children being raised in the richest nation on earth. Think about that.

And the medical industry even agrees! And write about it! (Cure Today – Picking up the Pace - Igniting progress in the cure of children with cancer - http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/art...)
To paraphrase - “we must enlist friends and families of children with cancer to secure funding for research”! What?

While it sounds like a bad comedy, it is a national tragedy. What are the last 2 national tragedies? When the shuttle went down, did we ask the astronauts families to figure out the problem with the O-rings? After 9/11 did we ask the victims’ families to "help us out with this war thing?" Yet it's our approach for dealing with the #1 killer disease of our children today! And drug companies? Well, there just aren’t enough cases to make it profitable to research childhood cancer. They admit it. But boy have we got restless leg syndrome down eh?

And don’t tell me how research into adult cancers is transferred to our kids. Right now the treatments are “down-sized” adult doses. And the results? 60% of survivors develop secondary cancers, infertility, major organ damage, developmental problems or other issues.

Remember, it could be your kid. And trust me, this childhood cancer community will be watching. We are getting stronger every day. Our question to President Obama was one of five health care questions voted into the Presidential Briefing Book, out of over 125,000 questions (Page 16 - http://www.whitehouse.gov/assets/documents/Citizens_Briefing_Book_F...), seeking additional funding for childhood cancer research. We will be heard.

At this point, all I can say is please, I hope and pray that SU2C will fund research specifically into pediatric cancers in its next round of Dream Teams.

AJ's Dad
Co-Founder
People Against Childhood Cancer
http://curechildhoodcancer.ning.com/
Thank you! Thank you, thank you for this beautifully written letter expressing what so many of us know and feel. God bless you for your talent and tirade! You said it all and they are listening. AJ must be so proud of his amazing dad.
Thank you,
Debbie ~mom to Mackenzie 5/01/01 - 2/12/08
they know we are watching and thats amazing.
Oh, I am so happy to read this information. I think it's a great step!

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