Bereaved parents, Gavin and Wendy Lindberg from the EVAN Foundation, recently wrote a very moving letter to the editor of the New York Times. Their letter touched the hearts of the  parents and grandparents in the childhood cancer community.  Letters to the editors of hometown newspapers get the attention of their locally elected officials and they are the ones who we need to get things done.

“As bereaved parents of a child lost to cancer, we join thousands of other pediatric cancer families in calling on the incoming Congress and administration to enact the three childhood cancer bills that fell victim to year-end government funding politics (one of the four proposed bills, for research funding, was approved). If there is one issue that should unite all Americans, it is combating the leading cause of death by disease in children. A show of bipartisan support for brave young kids fighting for their lives would be a refreshing way for our leaders to begin the New Year. It would be an act of great consequence and symbolism, and it should be done without delay. Children battling cancer do not have time to waste.”

Please consider writing a letter to the editor of your local newspaper.

Here’s a sample letter.  Except for your personal story (Shown in Red),  cut and paste all of it . The most important thing you can do is write a letter and email it to your local newspaper. Don’t have a local newspaper? Consider sending it to an adjoining town’s paper, or a radio or TV station that services your area. Speak up for kids!

Dear Editor,

In the process of cutting the “pork” and saving time, important childhood cancer bills were cut by Congress in the last day of their legislative year. The clock ran out. One bill, The Gabriella Miller Kids First Research Act 2.0, did make it through at a reduced rate in the very last minute,

Tell Your Story Here  I care about this issue because my child Jacob had cancer when he was 10. He was a sweet kid and before being diagnosed he wanted to be a rock star or NBA player.   He didn’t have a chance. Had he lived, the cancer medicines would have left him cognitively impaired and never able to live independently. My family will forever be affected by his death at such a young age.

The three important bills, each crafted to NOT require Federal Funding, all landed on the cutting room floor. Now we will have to start all over. What torments  all of us the most is that the children who would have benefitted from these bills have been delayed once again.

1. The Give Kids A Chance Act would help develop new therapies requiring testing of  combinations of drugs. Now, the FDA only requires one drug at a time for testing in kids while adults can get combinations and this has shown a lot of success.
2. Creating Hope Act Reauthorization (PRV Vouchers) Today, the program has expired for the first time in 12 years. Now, there are no incentives for companies to develop drugs expressly for kids with cancer and other life threatening illnesses.
3. Accelerating Kids’ Access to Care Act  allows kids on Medicaid or CHIP to cross state lines to obtain life saving care not available in their home state. Every child should be able to get the care they need regardless of economic status!

I join thousands of other pediatric cancer families in calling on the incoming Congress and administration to enact the three childhood cancer bills that fell victim to year-end government funding politics. This should be done without delay. Like my son Jacob, children battling cancer do not have time to waste. I ask other parents who feel as I do to call and write their Representative and Senators to help us get this done quickly.

Sincerely,

Your Name, City and State