This has been re-submitted to California Governor Jerry Brown
–“Thank you Governor Brown, for your consideration and time, which I know is limited to very urgent matters. I must emphasize that my reaching out to you in full knowledge of this is due to the fact that I am aware of so many children, right now, facing death to DIPG, and so many parents in literal agony.”
August 17, 2015
Dear Governor Brown,
I was fortunate to speak with a Press Agent from your office yesterday concerning Childhood Cancer Awareness Month, and my request for a DIPG Awareness Day. Many of us around the US are gathering at our State Capitol buildings on Saturday, Sept. 12, in an event called “Kids Ride Nationwide for Childhood Cancer”, supporting greater awareness for our kids with cancer and the inequities in cancer research funding for them, and also hopefully to celebrate our State Capitol building(s) “going Gold” with floodlighting for Childhood Cancer, as gold is the color for Childhood Cancer Awareness. This is a movement that I support as a result of my involvement with Jack’s Angels Foundation for DIPG, and is part of Jack’s Angels campaign for a National DIPG Awareness Day.
Brain tumors are the leading cause of cancer-related death in children and one of the least-funded areas of research, even of childhood cancer research, which as a whole receives only 4% of our National Research Budget with the NCI. DIPG is responsible for 80% of the pediatric brain tumor deaths annually with no survivors for over 35 years of record. These people have been told for decades that there are no therapies for their child because the numbers aren’t great enough for research investors, and now there are thousands of such families, and I watch other parents hopelessly see their child disappear from this world on a daily basis. I lost my son 3 years ago to DIPG.
The median survival time for DIPG after diagnosis, with treatment, is 9 months. Nothing will change the neglect of DIPG and pediatric brain tumors except greater awareness. Lauren Hill was honored at the ESPY’s, yet DIPG was never mentioned. Almost all of the high-profile terminal cases of childhood cancer in the media this year have been DIPG, but have you heard it? DIPG is one disease that is currently making clear that our hospice facilities around the country are ill-equipped to handle children. Please help us, Governor Brown, to raise awareness for DIPG and pediatric brain tumors by declaring a DIPG Awareness Day for California. I am certain that it will help us get a National Day, as California is a leader in humanitarian issues for our people and our planet.
President Obama has been very gracious and sensitive to my requests to him, my raising awareness for DIPG and childhood cancer, yet, in his replies, DIPG is never mentioned. I can’t tell you how powerful a proclamation it would be for our country for California to take the lead in this. Our State Assemblyman Scott Wilk, in his greatness of heart and compassion for his constituents, passed ACR151 last year for a DIPG Awareness Week, May 25-31, and Pennsylvania’s State Legislature passed a similar Resolution in February of this year. Your support in making a proclamation for DIPG children and their families would be a powerful step in gaining National recognition. We just celebrated National Hot Dog Day, for Heaven’s sake! Surely we can move forward for our children with DIPG and pediatric brain tumors. Although I remain forever grateful for the State Assembly’s Resolution, a proclamation from you, our Governor of the Golden State, would be such a powerful step forward in this Movement.
Thank you Governor Brown, for your consideration and time, which I know is limited to very urgent matters. I must emphasize that my reaching out to you in full knowledge of this is due to the fact that I am aware of so many children, right now, facing death to DIPG, and so many parents in literal agony.
I will remain, in gratitude
Janet Demeter of Jack’s Angels Foundation