• What You Can Do
  • You Can Help in Three Powerful Ways
  • Current Actions

• Help Families Affected by Cancer
  • How Pediatric Cancers Affect Families
  • Stories of Families Affected by Cancer
  • Ways to Help Families Affected by Cancer
  
  
  You Can Help in Three Powerful Ways:

1. Donate to support independent research of pediatric brain cancers. The Pediatric Brain Tumor Foundation and Alex's Lemonade Stand evaluate research studies and direct donations to those they consider to be the most promising.
2. Encourage state legislators and the president to fund pediatric brain cancer research through the National Cancer Institute of the NIH and to create legislation that stops drug companies from making incentive payments to doctors in any form. Current Actions
3. Support families who have children with cancer or other life-threatening diseases by providing meals, mowing lawns or doing other helpful things while they are in the hospital, or by giving directly to a family in need or to one of the organizations that support those families.

Above all, we must continue to pressure our leaders to make curing a cancer a priority. We have all known someone who has suffered from cancer; we may have suffered from it ourselves. It is a disease that affects us all, and it is high time for a cure.

Our leaders have always achieved great gains by helping our nation imagine a positive goal, such as reaching the moon, encouraging democracy in Eastern Europe, or demanding a United States where everyone is free and has equal rights. The last major presidential initiative occurred when Richard Nixon declared a War on Cancer in 1971. What better legacy NOW for a president and congress than to achieve a cure for cancer?

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Current Actions

[Posted May 2009]

*Legislative Update as of May 2009:
The Caroline Pryce Walker Conquer Childhood Cancer Act of 2008 (formerly known simply as the Conquer Childhood Cancer Act of 2008) passed with unanimous consent and was signed by the president! Thank you to all who helped to support this bill. The only pending children's cancer legislation that we know of at this time are a cancer survivorship research bill and an anti-smoking bill intended to protect children. You can read more about those measures here. We also trust that a portion of the new funds flowing back into academic research as part of the Obama stimulus will go toward basic science cancer research and children's cancer research, and are gratified to see that scientific research, including cancer research, is a priority again.

How Pediatric Cancer Affects Families

When diagnosed with a pediatric brain tumor or other life-threatening disease, it stops the world for that child and her or his family. Besides the logistics involved with hospital stays, clinical visits and negotiations with social service agencies or insurance companies, the families must face emotional issues and, often, financial difficulties.

In Ella's case, she had to leave her beloved daycare and had very limited contact with other children her age. She was on an intensive chemotherapy program that kept her in the hospital approximately three of every four weeks per month.

Her mother Shannon halted her career as a botanist to care for Ella; her father Tom continued to work as a communications manager, but needed time off from work when Ella's situation worsened and after she passed away.

To get an idea of what one family went through when the teenage son was diagnosed with cancer, read the Sacramento Bee's Pulitzer Prize winning series.

Read about how Derek Fisher, star NBA player of the Utah Jazz, consented to the use of a promising new treatment (PDF) on his infant daughter's retinoblastoma. Fisher later abandoned a three-year, 20.58 million dollar contract with the Utah Jazz in order to concentrate full-time on the care of his daughter (which inspired Ella's father Tom — despite his loyalty to the Sacramento Kings — to buy a Derek Fisher jersey).

To learn the lengths that a Wall Street investor went to save his daughter, read "Saying No to Penelope" (login/payment may be required)

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Ways to Help Families Affected By Cancer

If you know a family who is being affected by cancer, you may already realize that a long-term battle with pediatric cancer can hit even middle-class families hard. Bringing meals, mowing the lawn, or even giving gas cards or gift cards may be an immeasurable help to a family that is having its finances and time stretched too far.

Donate to an organization that helps the families of pediatric brain tumor patients, such as the Pediatric Brain Tumor Foundation, or a regional organization.

Regional organizations are familiar with the treatment landscape and unique challenges of the area they serve. To find an organization in your area, contact your local hospital with a pediatric cancer treatment center. Some examples of these organizations are (in California) We Can, The Keaton Raphael Memorial, Derek's Wish and (in Wyoming) Jason's Friends. Unfortunately, there is no umbrella organization that connects these important regional organizations or unites their energies toward national change.

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