Childhood cancer Awareness Month - Day 1

This is Michael. Today is September 1, and the start of Childhood cancer Awareness Month. Melissa, Cannon and I are in Scotland, and we are having a terrific break with Cannon that he so much deserves, but our minds are never far from the world of children's cancer. Cannon continues to take his experimental drug DFMO twice a day (part of a clinical trial that seeks to determine whether DFMO can help prevent relapse in children that reach NED status), and the three of us have attended two events here in Scotland to advocate for children with cancer and to raise funds for our foundation so that we can ultimately make grants for research into more effective treatments for children with cancer, treatments designed specifically for children and their size and weight, and, ultimately, cures for the 12 major types of cancer found only or primarily in children.

I will be posting every day during the month of September. I want to continue the mission--- education of our public to one of the wrongs of our society as civilized people: that we devote more to adults when they develop cancer than we do children. People can spin it any way they want, but this is a simple truth--- develop cancer as an adult and you will have many resources in attempts to provide a cure and save your life; develop cancer as a child and your prospects are quite dim, not only on survivorship beyond childhood (despite the 80% "survivorship" statistic that is simply misleading and I will address fully in a future post), but in hardship of lifelong health problems caused by being treated with drugs and therapies designed only for adults.  

I will start today with basics and usually the primary reason we give for attention and call to action for our children with cancer:

Childhood cancer Fact of the Day:   Cancer is the NUMBER ONE killer of our children by disease; it kills more of our children on a year-to-year basis, week-to-week basis, month-to-month basis or by any metric one wants to use than AIDS, Diabetes, Cystic Fybrosis, Muscular Dystrophy and Congenital heart and birth defects COMBINED.  Source: www.curechildhoodcancer.org

What else needs to be said than that?? If something is taking away our children more than any other disease and by numbers that multiply other diseases, how can we as a civilized society ignore it? Yet, it happens. And it is wrong. It is, without question in my mind, shameful.

Since today is the first of the month, perhaps everyone can send a letter to their representatives in government. Below is a form letter that we have shared in the childrens' cancer community, and you can use it verbatim or change it to suit your needs. The important thing is that you send it to your representative(s) by mail or electronically. For those living in the UK or other countries around the world, revise it--- the statistics don't change much from country to country--- our children are dying worldwide because of the lack of research into the causes of pediatric cancer, and we must force and demand worldwide that our children be treated with dignity and full respect in the research and development world.

Here is the form letter:

Dear Congressman or Senator ______,

Childhood cancer is the leading cause of death among children in the U.S. This fact alone is enough to garner first priority attention of Congress, and I am requesting your full attention to the needs of children diagnosed with cancer and those now fighting for their lives because of the lack of attention and support for research to develop better therapies for these children.

Each year approximately 13-15,000 children are diagnosed with pediatric cancer. Survivorship statistics for children with cancer are misleading because they only "count" children that survive five years, but even if they do survive, 60% of survivors suffer life altering impacts because they are treated with therapies designed for adults.

As stated on its childhood cancer webpage (that is rarely updated and largely ignored), the National Cancer Institute (NCI) indicates that pediatric cancer is “relatively rare.” This insensitive perspective is reflected in the fact that NCI dedicates less than 4% of its budget to pediatric cancer research. The bulk of these research dollars go to leukemia research (that has an 85%+ survival rate) and little or nothing to the 11 other major types of  childhood cancers. ALL pediatric cancers need more research dollars, including the deadliest cancers — DIPG, AT/RT, neuroblastomas. With these cancers, kids are virtually handed a death sentence on diagnosis, largely due to the lack of research.

As Americans we must demand that our nation invest in pediatric cancer research and give our kids hope. The thousands of kids that die each year, as well as the tens of thousands in treatment, deserve better from this great society. As you approach hearings for fiscal year, we request that you consider the needs of our children and pediatric cancer research. We request that Congress:

• Support and vote yes on HR 2607/S 1251 – the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act. This bipartisan bill has been introduced in both chambers of Congress, and includes funding that will help improve the tracking of childhood cancer cases by state cancer registries, and will expand childhood cancer research by establishing new biorepositories. 

• Appropriate that NCI shift funding to increase funds for pediatric cancer research by a significant amount, and that funding levels continue to increase until there are cures, treatments and protocols available for pediatric cancers.

• Appropriate that NCI designate a portion of research dollars for the deadliest childhood cancers, realizing that thousands of kids are dying because there has been no research into these cancers.

• Provide Bill language to require a Pediatric Oncologist be appointed to the National Cancer board.

• Provide language that requires NCI to shift resources to allow for an increase in staffing and awareness regarding the facts and not just the statistics of pediatric cancer, including establishing relationships with pediatric oncology facilities around the country.

In closing I would like to thank you for your consideration of this issue so important to our children. I look forward to your response.

Sincerely,

Your name

Your telephone and/or email address if you choose

___________________________

Please help Melissa and me and all the parents, families and advocates raise awareness so that someday, someday, cancer in children will be no more. Cancer in children is wrong. It is unjust. And it is unnecessary. 

For Cannon and all the kids who unjustly fight this disease every day of their lives, do it for them and our future generations, and do it in honor of all those unnecessarily lost to childhood cancer. We can do this.  

And don't forget--- please watch TheTruth365 at www.thetruth365.org and ask others to do the same. Share it and put the power behind the message. Thank you.

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