U.S. Senate Passes "DIPG Pediatric Brain Cancer Awareness Day" Resolution

U.S. Senate Passes "DIPG Pediatric Brain Cancer Awareness Day" Resolution

The United States Senate passed the DIPG Awareness Resolution" (Res S231) this week.

Now, the DIPG Advocacy Group is focused on getting it passed in the U.S. House of Representatives.

Rhode Island's Fachon family, who lost their son Neil to DIPG in 2017, is working to ensure its passage. 

GET THE LATEST BREAKING NEWS HERE -- SIGN UP FOR GOLOCAL FREE DAILY EBLAST

"In spring 2018, Dean and I worked with Janet Demeter, who leads the DIPG Advocacy Group, to meet with Jack Reed and his health aide Jill Boland about introducing 2018 H. Res. 69 to the Senate," said Wendy Fachon, Neil's mother, of working with her husband -- and the Rhode Island Congressional delegation. 

"The resolution expresses support for the designation of May 17, 2021, as 'DIPG Pediatric Brain Cancer Awareness Day' to raise awareness of and encourage research on diffuse intrinsic pontine glioma tumors and pediatric cancers in general," Fachon added. 

About Fachon Family 

Eugene “Neil” Fachon of East Greenwich, who fought the U.S. Food and Drug Administration (FDA) to be allowed to use an experimental treatment, died on February 19, 2017.

As GoLocal reported:

Fachon, who had been a student at Northeastern University, had an incurable form of pediatric cancer — Diffuse Intrinsic Pontine Glioma (DIPG).  Fachon entered into an approved FDA clinical trial in April of 2016 and ten days into treatment, the FDA pulled the plug on the treatment.

Fachon and his family ultimately had to file a lawsuit in Federal Court reversing the FDA’s decision. 

He lived nearly a year longer than doctors had diagnosed.

Wendy Fachon has a newly released memoir, a collection of stories that includes the story of Neil's DIPG diagnosis