Meet the Parents Fighting to End Pediatric Cancer

When these parents heard the unimaginable words “your child has cancer,” they grieved—then got to work to help find a cure.

By Kimberly Hiss
Also in Reader's Digest Magazine March 2014

nancy goodmanSpencer Heyfron/Redux for Reader’s Digest

A Lifesaving Law

In 2007, a pediatric brain cancer called medulloblastoma transformed Nancy Goodman’s eight-year-old son, Jacob, from a boy passionate about sports and music to a wheelchair-bound patient running out of options. After Goodman, a Washington, DC, lawyer, contacted 36 teams of doctors and researchers across the globe, she realized that their underfunding was so profound, there was no help to be had.

“Jacob died on a Friday night in 2009,” Nancy says. “On Saturday morning, I put my laptop on the dining room table to figure out how to make research more productive for children’s cancers.” That was the start of Kids v Cancer.

The first project grew from the decision that Nancy, 50, had made 
in her son’s final days to donate his autopsy tumor tissue. Researchers used that precious gift to make significant advances. (One scientist discovered that primary and metastatic tumor tissues are genetically different, which affects treatment.) Nancy learned that many families would like to donate tissue as a “last stand against cancer,” but doctors are reluctant to make such a sensitive suggestion. So Kids v Cancer launched a program that facilitates donations at families’ requests.

At the same time, Nancy knew that massive changes were needed in the landscape of drug development for rare childhood diseases. She enlisted help to draft a bill called the Creating Hope Act, then headed to Capitol Hill for the first time. She visited hundreds of members of Congress and staffers with fellow lobbyists, including Jacob’s friends and his little brother, Ben, now 11. “Ben would talk about losing his brother and what he understood about the need for new drugs. He could make a senator cry,” says Nancy, who also has a daughter, Sarah, three. After the bill secured 172 cosponsors, it passed into law on July 9, 2012.

Under the law, if the FDA approves a company’s drug for pediatric cancer or other diseases, that company receives a priority review voucher (Nancy calls it a golden ticket) that can be applied to any other medication—such as a lucrative adult drug—to get it reviewed faster by the FDA. “We’ve given companies a way to do well by doing good,” Nancy says.

To make a donation or to help write to members of Congress about pediatric cancer, visit kidsvcancer.org.

Next: Lisa and Mac Tichenor and What Would Willie Want »

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  • Your Comments

    • http://www.medjugorje.org/pieta.htm Phaerisee

      I think the word “inspiring” tends to get overused, but in this case it applies.

    • http://www.jamnesdaddio.com James

      Nothing worse than what you and your child are going through
      i sympathize as I was diagnosed with a rare blood condition and found that there is very little being done for a cure only expensive treatment and believe that only the mass cancer issue are being addressed and even those are lobbyists controlled .. Example Leukemia foundation a wonderful group with true financial suppot compared to American Cancer Society which will par for your car fare to the hospital I have know I idea what they are doing with their money for research to cover the gamut..People don’t want to hear about the C word they just give money and the do diligence is in a cloud..

    • Deb

      Please be aware that Penn State University holds a THON each year to benefit children’s cancer research and expenses. They have raised over $100M since it began over 20 years ago ($12M last year alone). This is the largest student run philanthropy in the world–the students spent weekends in the fall “canning” throughout the eastern United States and I even saw a homeless man put money in a can in center city Philadelphia! Then they hold a dance marathon in February (coming up in a few days) where they dance for 46 hours. It’s a really emotional event because many student organizations will “adopt” a childhood cancer patient and their family and the students provide support to that family throughout the year with visits, treats, cards, etc. and then the families are invited to attend the thon event to “support” their dancers. It’s the highlight of the year for some of these kids.

    • Nancy

      Wonderful story!! I lost my son Alexander on April 1’2011 to neuroblastoma. He was just 21 months old. Before he was diagnosed, I “knew” kids got cancer, but I never really gave it much thought. It is an evil horrible disease. I am glad there are parents like these, along with others that are raising funds to help the kids. Not is just sad, that it is the PARENTS doing all the work, and the government giving just 4% of the cancer funding to the kids.