05-30-18 Raising Awareness for Children & DIPG with Janet Demeter
In memory of Jack Demeter and Neil Fachon
Blessed with varied interests and an artistic and musical upbringing, Janet had health challenges throughout her young adult life. Despite these she graduated Cum Laude from Wellesley College with an award of distinction for acting, and had also been a champion equestrian. She began a family with her husband Barry later in life, and had finally found happiness with daughter Sophie-Marie (3/12/06) and then baby (Jack 8/30/08). Five weeks after his birth, the family escaped a wildfire in which all worldly possessions were lost. The family relocated in December of 2008 to Agua Dulce CA where they currently reside.
Jack began to have unsettling symptoms at the age of 3; he was taken to Children’s Hospital Los Angeles and was diagnosed with DIPG, or diffuse intrinsic pontine glioma, on Friday Oct. 28, 2011, indisputably the darkest experience of Janet’s life. The outrage of it made her determined to find the good in the situation, and she asked God to “Put me to work!” After Jack’s death, she remained determined to start working to find solutions to DIPG and incorporated Jack’s Angels at the end of 2012; the Foundation began its work in 2013. Despite the fact that DIPG is responsible for the majority of brain tumor deaths in children, she had been told there were no solutions for Jack because “the numbers aren’t great enough for investors.” This remains the primary motivation in her advocacy work, to prioritize children’s lives in our medical system in the United States.
In 2016 Janet Demeter started “Childhood Cancer Talk Radio” as an advocacy arm for children with cancer, and the “Relay for Kids” program, debuting with “Relay for Jack” this May 2016 to raise funds for the most urgently needed pediatric cancer research.
Jack’s Angel’s Foundation
Our Mission: To find solutions for DIPG and pediatric brain tumors by promoting the funding of creativity in scientific research, raise public awareness with activism and advocacy, and to support the afflicted.
Our Vision: We believe in and see a world where our children are loved and prioritized in our actions as much as they are in our spoken values, where science works with nature as partner rather than conqueror, and where our human and spiritual values determine our currency.
- My son Jack was diagnosed 10/28/2011 with DIPG and he died 7/30/12; he was 3 years, 11 months old
- Founded Jack’s Angels in late 2012, our first year of operation was 2013;
- Began advocating with the Alliance for Medical Research, and then the Alliance for Childhood Cancer in 2014 in Washington DC, and independently
- Worked with my State Assembly to get the first State level DIPG Awareness Resolution in the US, California 2014.
- My State Senator at that time is Steve Knight, who is now my Congressman of the 25th District of California, and we began working on the first DIPG Awareness Resolution in US Congress, drafting in September 2015, introduced (H.Res.586) to the 114th Congress 1/13/16, and re-introduced (H.Res.69) to the 115th Congress 1/30/2017 designating May 17 to be DIPG Awareness Day (May is Brain Tumor Awareness Month)
- In 2016 a movement was started by Jenny Mosier and the Michael Mosier defeat DIPG Foundation in Bethesda, MD called “DIPG Across the Map” using the May 17th date for as many States as possible, so this is why we used this date for H.Res.69 introduction to Congress in 2017, for a coherent effort for DIPG Awareness
- 2017 Saw 21 States, this year we’ve had 31 States declare May 17 DIPG Awareness Day
- Created DIPG Advocacy Group in Fall 2017, now our Group has almost 200 members and we have 3 scheduled trips to Washington to advocate for H.Res.69, and a Presidential request for it in the works as well.