You can make a difference
Our mission is to raise awareness of DIPG and fund research for new treatments and a cure.
Imagine facing the devastating diagnosis that your child has a rare brain cancer for which there is no cure or viable treatment. That was the overwhelming news our family received when my 4-year-old grandson, Sammy, was diagnosed with DIPG or Diffuse Intrinsic Pontine Glioma. This inoperable cancer grows inside the brainstem and so affects ALL bodily functions including breathing, swallowing, walking, talking, hearing, and seeing; often leaving the child paralyzed with no way to communicate with their parents.
In Sammy’s case, he was treated for two months as part of a clinical trial at St. Jude’s Children’s Research Hospital where he received 33 daily radiation treatments. This period allowed our family to make memories and for Sammy to enjoy his “Make A Wish" trip to Disney World. Our angel and hero, Sammy, died at age 5, merely 14 months after his initial diagnosis. There are certainly no words to adequately describe the heartbreak and loss to our family.
To put Sammy’s story in broader perspective, consider:
- Cancer is the leading cause of death by disease in children under age 15 in the US.
- 36 children are diagnosed with cancer each day.
- Children with DIPG, on average, die within 1 year of diagnosis.
So, the magnitude and impact of this childhood cancer is significant. Yet, if you have never heard of this DIPG, it is understandable given these facts*:
- Childhood cancer research and awareness is vastly underfunded. The National Cancer Institute (NCI) spending only 4% of its budget on childhood diseases.
- In the past 20 years, the FDA has only approved two childhood cancer drugs.
- The result is an estimated $30 million per year gap in childhood cancer research funding.
With approximately 300 children developing DIPG each year and the survival outcomes being so poor, I’ve found my "true calling in life” and dedicated myself to supporting families affected by DIPG. For the past five years, I’ve been active in The Cure Starts Now Cancer Research Foundation (501c3 Federal Non-Profit), one of the only cancer foundations dedicated to finding cancer cures, starting first with one of the most deadly, pediatric brain cancer. I hope you will join me in this important cause.