Fachons on RI DIPG Awareness Day on May 17 on LIVE

Fachons on RI DIPG Awareness Day on May 17 on LIVE

Wendy and Dean Fachon, parents of Neil Fachon who passed away from DIPG -- Diffuse Intrinsic Pontine Glioma, the most common brain stem tumor in children -- appeared on GoLocal LIVE where they spoke to May 17 being DIPG Awareness Day in Rhode Island.

May is Brain Tumor Awareness Month, and the Fachons discussed the statistics for DIPG diagnoses, which the median age is children around the age of 5 -- and the prognosis is less than a year to live.

The Rhode Island House of Representatives on Wednesday passed legislation submitted by Rep. Joseph M. McNamara (D-Dist. 19, Warwick, Cranston) that would allow terminally ill patients to obtain experimental drugs that have not yet been federally approved but which may be in the final stages of FDA testing.

The bill (2018-H 7294) would create the Neil Fachon Rhode Island Terminally Ill Patients Right to Try Act of 2018, which would establish the conditions for the use of experimental treatments.  The bill now awaits further action in the Senate, where Senator Erin Lynch Prata is the primary sponsor.