To President Barack Obama: Thursday May 5, 2016
I had the pleasure of meeting with Fae Jencks in the Office of Science and Technology this last Tuesday regarding an Awareness Resolution currently in the House of Representatives, HRes586, designating the 4th week of May to be National DIPG Awareness Week. Along with honoring the many very young children who have faced certain death, the gesture would, just as importantly, give hope to those children currently battling the invariably terminal disease, and their families—that the Public would be aware of them, and that there are many of us in the United States fighting against indifference to their suffering. Unfortunately, DIPG is like death-row for kids with cancer. Concerning research, it represents more than one of the frontiers which our current knowledge of science, medicine and oncology face. Consistently, with what parents and DIPG organizations have been able to fund, the research proves a valuable source of new knowledge and discoveries for many areas of oncology currently needing support. The argument that it would not be a worthy investment of research funding has questionable validity. I believe that there is no argument justifying indifference to these children and their families, except perhaps political ones which are notoriously void of human value, or merit, except in those cases to avoid war or hardship to the American People.
Equally important is the awareness which HRes586 raises to the urgency of need for this research, and the conversation it begins, which the HR bills for childhood cancer do not do directly, for elevated consideration for low-survival-rate cancers and years of life lost in the NCI research grant process. The NIH definition of a disease with less than 200,000 per year incidence as “rare” is the only definition of which I’m aware. The context of this can easily be manipulated and applied erroneously, as it has been for years (for example in the media DIPG is referred to as a ‘very rare brain tumor’) to the end of ignoring the urgency of the needs of some of our most vulnerable citizens; our children with cancer. DIPG is one of the most common pediatric brain tumors, and is responsible for roughly 80% of pediatric brain tumor deaths, the leading cause of death in children with cancer; it is hardly irrelevant. I do realize I’m repeating myself with this from my previous letter to you, but it’s import warrants repetition.
I am appealing to you and Vice President Biden because an Administrative Proclamation would be of the most immediate and substantial help. I can think of no greater honor and hope for our children with brain tumors in our Great Country; one thing they have very little of is the time that it will take to pass the House and introduce counterpart legislation in the Senate. Ms. Jencks let me know that aside from support in the House and potential support in the Senate, support from DIPG and childhood cancer organizations would be considerable, also, in a decision for a Proclamation for a National DIPG Awareness Week. And so, I have included a list of such organizations, their webpages, some devoted to HRes586. Also included are the names of the Congressional Representatives in favor of the Resolution, as well as the Senators supportive of counterpart legislation. My visit this last Monday and Tuesday to Washington was important to clearly identifying some of them—at least those with whose staff I had the opportunity to confer; there weren’t that many with whom I could meet in just 2 days unfortunately, but the phone calls will continue.
I will preface my final and brief digression here with the fact that I am a huge fan of “Make A Wish” Foundation and am supportive of them. However, every now and then mistakes can be made. In our case, for my 3 year-old son Jack, I thought there would be no greater honor my son could experience in his very short life than to travel to our Nation’s Capital and meet the President of the United States. I was told by a Make a Wish representative that they had never seen a case where the first request was not granted, and I had heard that there had been another DIPG child in 2009 who had had the honor of meeting you, so this was our request. It was denied, and my most horrible mistake was to have told little Jack that he would be able to meet you. He had been so excited! I was crushed; I wanted this so much for him. He was so incredibly smart… way beyond his years. He was already doing 10th grade geometry and the alphabet in 3 languages. I wanted him to meet another really, I mean really, smart guy!!
Thank you for considering this. I hope that I will be informed of any further information or work I need to do to support the possibility of a Proclamation. I am not well-versed in the ways our Government branches interact but I hope, I truly hope, that where you have the privilege to help people in our Great Country, it would be afforded to our kids bravely fighting DIPG and their grief-stricken families, right now. Thank you so much for your time and consideration.
With deep gratitude, I remain
Respectfully yours,
Janet Demeter
Jack’s Angels Foundation
32520 Wagon Wheel Rd.
Agua Dulce, CA 91390
661-977-3125, 818-400-2724 mobile
List of Organizations Supportive of HRes586:
Jack’s Angels Foundation for DIPG Advocacy and Research, 32520 Wagon Wheel Rd., Santa Clarita, CA 91390 http://jacksangels.org
Childhood Cancer Talk Radio, Toginet.com http://cctalkradio.org
Smashing Walnuts Foundation, Ellyn Miller, mom to Gabriella Miller of the Gabriella Miller Kids First Act, Leesburg VA 20178
- Ellyn has, in vying for a 2nd and 3rd year of funding for Kids First, has discussed with Dr. Collins of NIH the designation of some of those funds for DIPG research. She has made sure that DIPG is on his radar.
Michael Mosier Defeat DIPG Foundation, Bethesda, MD 20827 Jenny Mosier, Executive Director
Action page: http://defeatdipg.org/hres586
Children’s Cause Cancer Advocacy, 122 C Street, NW, Suite 240, Washington, DC 20001
webpage for Hres586: http://www.childrenscause.org/hres586/ National Advocacy Organization
Both Ellyn Miller and Jenny Mosier addressed the DIPG Collaborative for the Pittsburg meeting in March, in support of HRes586
DIPG Collaborative Partners: (dipg.org) All are DIPG organizations inspired by the loss of a child with DIPG
The Cure Starts Now Cincinatti, OH thecurestartsnow.org
Julian Boivin Courage for Cures Foundation, Birmingham, MI 48012 http://courageforcures.org
Hope for Caroline, http://hopeforcaroline.org Norwell, MA 02061
Reflections of Grace, http://reflectionsofgrace.org Irwin, PA 15642
ChadTough Foundation, http://chadtough.org (HRes586 is unofficially titled, “Chad and Jack’s DIPG Resolution” for Chad Carr of AnnHarbor, MI, and Jack Demeter of Agua Dulce, CA)
Jeffrey Thomas Hayden Foundation, event May 27 http://jthf.org Liberty Township, OH 45011
The Musella Foundaton For Brain Tumor Research & Information, Inc, https://virtualtrials.com/musella.cfm, Hewlett, NY 11557
The Cure Starts Now Australia, Deeragun, Queensland, Australia 4818
Soar with Grace Foundation, http://soarwithgrace.org, Charlotte, NC 28271
Abby’s Army, http://www.abbiesarmy.co.uk/ M.P.T House, Brunswick Road, Cobbs Wood Industrial Estate, Ashford, Kent. TN23 1EL
Brooke Healy Foundation, http://brookehealey.com/ New Providence, NJ 07974
Cure Brain Cancer Foundation, http://www.curebraincancer.org.au/ ABN 22 121 906 036
Operation Grace White, http://www.helpfightdipgforgrace.org/ Lexington, KY
Aiden’s Avengers, event May 27 https://aidansavengers.com/ Douglassville, PA 19518
Benny’s World https://bennysworld.org Chicago, IL
Pray, Hope Believe Foundation https://prayhopebelieve.org , Cincinatti, OH 45453
Ryan’s Hope Foundation, event May 27, York, PA 17408 www.ryanshope.org
Smiles for Sophie Forever, http://smilesforsophieforever.org , Avon Lake OH
A Cure from Caleb Society, http://curedipg.net, in loving memory of Caleb Lanz
Love, Chloe Foundation http://lovechloe.org , SALINA KS 67401
Waylands Warriors http://www.waylandswarriors.com/ Noblesville IN 46060
Caroline’s Miracle foundation http://www.carolinesmiraclefoundation.org/ Old Lyme, CT 06371
Always Sammie’s Grammy http://www.alwayssammysgrammie.org/ Troy, MI 48084
There are more; if I had secretarial help this would be more complete..
Members of Congress:
Introduced by Steve Knight, [R-CA25] 1/13/2016
Cárdenas, Tony [D-CA29]
(joined Jan 13, 2016)
Chabot, Steve [R-OH1]
(joined Jan 13, 2016)
Conyers, John [D-MI13]
(joined Jan 13, 2016)
Eshoo, Anna [D-CA18]
(joined Jan 13, 2016)
McCaul, Michael [R-TX10]
(joined Jan 13, 2016)
Speier, Jackie [D-CA14]
(joined Jan 13, 2016)
Van Hollen, Chris [D-MD8]
(joined Jan 13, 2016)
Cohen, Steve [D-TN9]
(joined Feb 1, 2016)
Hahn, Janice [D-CA44]
(joined Feb 1, 2016)
Murphy, Tim [R-PA18]
(joined Feb 1, 2016)
Comstock, Barbara [R-VA10]
(joined Mar 14, 2016)
Dingell, Debbie [D-MI12]
(joined Apr 27, 2016)
Senators offices I personally visited with who are supportive of counterpart Senate legislation for HRes586:
Senator Barbara Boxer, D-CA
Senator Dianne Feinstein, D-CA
Senator Shelly Moore-Capito, R-WV
Senator Elizabeth Warren, D-MA
Senator Jack Reed, D-RI
Senator Bernie Sanders office said if it were introduced they might sign, but are not supportive of introducing it; gave the “can’t focus on any disease” answer.
Events– some are listed above with name of organization, but most noteably:
“Relay for Jack!”, May 28 benefitting Jack’s 12 Pebbles Research Project celebrates HRes586
Vasquez Rocks County Park, 10700 Escondido Cyn. Rd., Agua Dulce CA 91350 7am-5pm, Relay 8am-4pm
Superhero Sprint and 6k, May 29, benefiting DIPG research with the Michael Mosier Defeat DIPG Foundation,
May 29 @ 8:00 am – 10:30 am, Westfield Montgomery Mall, 7101 Democracy Blvd., Bethesda, MD 20817 United States
Golf Tournament and Gold Banquet, Friday May 27, 2016, Aiden’s Avengers
Reading Country Club,5311 Perkiomen Ave., Reading, PA 19606
