A Worthy 2nd

May 28, 2014, Agua Dulce, CA—A tradition in the greater Santa Clarita Valley is developing in May, brain tumor awareness month.  Jack’s Angels Foundation, of Agua Dulce, CA, is dedicated to awareness, support, and research for DIPG, a pediatric brainstem tumor responsible for 80% of pediatric brain tumor deaths annually, no survivors, and no progress to that effect in over 30 years.  The foundation was inspired in loving memory of James-William “Jack” Demeter, Agua Dulce resident,  8/30/08—7/30/12, afflicted with DIPG in late 2011, and suddenly lost forever;  it was motivated also from the fact that there are currently no answers in modern medicine to this affliction, and not nearly enough going on to find those answers.

Agua Dulce Elementary 2012

In the spring of 2012, while Jack was still alive, Peggy Marrone, art teacher at the Agua Dulce Elementary School brought to the Demeter household over 60 beautiful paintings in support of a music event for Jack slated for July 2012.  Sadly, tumor progression set in and there was not time to adequately prepare the art for the benefit concert.  Jack’s mother and founder of Jack’s Angels, Janet Demeter, remained determined that Jack’s Angels foundation’s first event should be dedicated to celebrating children’s art, and so it was, May 11 2013, involving children’s art workshops, fine art displays of local artists, and musical entertainment from professional artists and also talented young artists.

On May 20, 2014 Jack’s Angels hosted its 2^nd annual “Art for Jack” event.  The children’s art workshops included acrylic painting with Heidi Vaughn, art teacher at the Buckley School for over 30 years,  watercolor/crayon with Peggy Marrone, art teacher at Agua Dulce Elementary School, and creative collage with Stefanie Schussler, local artist and teacher.  Exhibiting artists included Lorlinda Osborne and Janine Ayres of Santa Clarita, CA;  the “Art for Jack” traveling gallery created a special tribute to 6 DIPG children recently passed away, notably John Bradley Thompson and Naithan Sizemore, whose stories the foundation followed closely and can be found documented on the foundation website.   Family entertainment was highlighted by vocalist Teresa James and saxophonist Jerry Peterson, singer/songwriter Dave Fraser, “Naked Rhythm”– Alex Spurkel on Doumbek, Michael Battista on Flamenco Guitar, and Quetzel Guerrero on violin, accompanying the Meadowlark Dancers, a middle-eastern-style troupe of young dancers headed by Mrs. Tracy Costan, of Acton CA.  Jim Thompson, master magician, enthralled the audience and employed extra assistance from the young onlookers, with many laughs and surprises.  Center Stage Opera made a special appearance, with performances by Shira Renee Thomas, principal soprano, heralding the coming this Fall 2014 of a choral program primarily for children in, but not exclusive to, the Acton-Agua Dulce area.  More information about this program will be forthcoming this summer from the Acton-Agua Dulce Unified School District.   Delicious supporters of the event included Rita’s Italian Ice of Saugus, CA, and Nothing Bundt Cakes of Valencia CA.   Le Chene Restaurant, of Agua Dulce, generously donated to the raffle, as well as “Jump 5150” of Valencia, “KidsArt” of Valencia, and “Pinots Palette” among others.  The Agua Dulce Royal Court and 4 local Cub Scout troops assisted generously in the festivities.

Jack’s Angels first goal was to start a DIPG research fund at Children’s Hospital Los Angeles, and also to support and encourage the formation of such a fund at every major children’s research institution with a strong neuro-oncology program in the US.  The first annual “Art for Jack” event in May 2013 drew some attention for DIPG, and the Mod Hatters of Acton dedicated their fundraising efforts from their annual golf event to open the DIPG research fund for Jack’s Angels as the result of publicity for the first “Art for Jack” event.  They were awarded a trophy and certificate of public merit for their contribution to Jack’s Angels cause, Friday May 23^rd, 2014 at the 2^nd Annual Powderpuff Football Game benefiting Jack’s Angels, at Vasquez High School.  Jack’s Angels gave out over 16 awards, including those key volunteers whose initiative enabled the foundation to survive its first year and begin to fulfill its mission.  Brandi Beltran,  2013 graduate of Vasquez High School, will accompany Janet Demeter Monday, June 2, in giving a gift to the DIPG research fund at Children’s Hospital LA.  “Art for Jack” 2015 is scheduled for Sunday, May 3, 2015.

Oren Dye and Brandi Beltran, who put it all together last year, receive Young People’s Award for outstanding service.

Brandi and her classmate Oren Dye, also a 2013 graduate of Vasquez High School, created the first Powderpuff game, now having the legacy of a 2^nd annual event.  The support has been instrumental to Jack’s Angels continuing raising awareness for the urgent need for more research for DIPG and pediatric brain tumors, the leading cause of cancer-related death in children, yet one of the least-funded areas of research.

Because of Jack’s Angels membership to the Santa Clarita Valley Chamber of Commerce, an organization that has been consistently supportive of the new public charity,  Jack’s Angels President Janet Demeter had the good fortune of meeting, at an annual Chamber event, Assemblyman Scott Wilk, affected quite

SCVCoC Leadership Academy Graduates 2014

strongly at learning about DIPG from Jack’s Angels literature.   His office has worked tirelessly to pass a resolution to make May 25-31^st DIPG Awareness Week in the State of California, the status information for which is now pending.  Jack’s Angels is also committed to raising awareness for the fact that only 4% of the National Cancer Institute’s annual budget for research funding goes to pediatric cancer research.  For more information about Jack’s Angels mission, visit www.jacksangels.org home page.

For updates on current and upcoming events, visit the EVENTS page, or access our newsletter on the homepage of www.jacksangels.org.

Letter to Representatives in Government

This letter went to US Congress Representative Buck McKeon, Senator Dianne Feinstein, Senator Barbara Boxer, President Barack Obama, and Vice President Joe Biden on Thursday, May 8, 2014.

Dear President Obama,

I’m working with California State Assemblyman Wilk’s office right now to raise awareness for the urgent need for research for pediatric brain tumors, the leading cause of cancer-related death in children today, specifically DIPG, responsible for 80% of pediatric brain tumor deaths, has no survivors, and for which there has been no progress to that effect in over 30 years.

I lost my 3 year-old son Jack to DIPG in July of 2012, and was made to feel like we had been struck by lightning, about how rare it was, and irrelevant, and how “we don’t know” what causes it, and that, ‘there isn’t a cause it just happens’.  This is an unacceptable reality in a country where we pride ourselves in putting our children first.  I discovered it is public knowledge that only 4% of the NCI’s budget for cancer research goes to pediatric cancer, yet I never hear it.  This absolutely must change.

President Obama, I can only trust that you represent our truly conservative values of family and the preciousness of our children’s lives.  I believe this is entirely a non-partisan issue.  This is not the first time you’ll hear from me about this.  I can’t tell you enough how much I appreciate any efforts you are making to listen to those working to advocate for brain tumor awareness this month.

What is my point?  I implore you to speak for us who have lost our children to this monster,  that this outrageous number of 4% must change;  our children’s lives, and the potential for advances in medicine from pediatric cancer research, need to be the primary consideration for research funding from the NIH—rather  than profits for investment,  which is invariably a consideration.

Thank you for your attention.

Sincerely yours,

Janet Demeter

President, Jack’s Angels Inc

32520 Wagon Wheel Rd.

Santa Clarita, CA 91390

661-977-3125 office, 818-400-2724 mobile

Jacksangels1@gmail.com

www.jacksangels.org

"Art for Jack", supporting DIPG research at Children's Hospital LA

Art for Jack, “Celebrating Children’s Art” May 11, 2013

 A first event for Jack’s Angels, a charitable organization supporting awareness and research for pediatric brain tumors, was held at the Agua Dulce Women’s Club in Agua Dulce, CA on May 11, 2013 from 1-7pm.  The event included free art workshops for children, magic shows, musical entertainment, silent auction, and art sales from professional, student, and child artists.  Jack’s Angels goal for 2013-14 is to establish a DIPG research fund at Children’s Hospital Los Angeles.  DIPG, or Diffuse Intrinsic Pontine Glioma, is a pediatric brainstem tumor with virtually no survivors, the median survival time with treatment being 9-12 months.  “DIPG”, says Janet Demeter, President of Jack’s Angels, “is responsible for 80% of pediatric brain tumor deaths.  May is brain tumor awareness month; most do not know that brain tumors are the leading cause of cancer-related death in children, and remains one of the least funded areas of cancer research.”  The event, and the foundation, was created in honor of James-William “Jack” Demeter, born August 30 2008, and passing away from DIPG July 30, 2012, missing his fourth birthday by one month.

The event was inspired by a gift from art teacher Peggy Marrone and many of her students at the Agua Dulce school in the Spring of 2012, while Jack was still alive.  Jack attended the preschool there for 10 weeks until he succumbed to tumor progression.  Demeter recalls, “He absolutely loved school; loved learning, loved the bus, loved the whole experience.  It was one of the highlights of his life.”  Mrs. Marrone’s gift was some 65 paintings, now the “Under the Sea” collection, viewable at www.artforjack.org.   “I was committed to creating the first event as a foundation to be dedicated to children’s art, because of this beautiful gift,” Demeter explained.

Thanks in part to Jack’s Angels membership with the Santa Clarita Valley Chamber of Commerce, the event received a good amount of attention.  Kindly, Mayor Kellar of Santa Clarita visited Art for Jack.  Kristen Rasmussen of the Foundation at Children’s Hospital Los Angeles paid her respects; and many of the wonderful residents of Acton, Agua Dulce, and Santa Clarita volunteered to help, participated in some way, or donated to the raffle, bake sale, or purchased art.  Notable volunteers included Katrin Glasgow, Michele Brett, Heather Norman, and the students of Vasquez High School, and Paraclete High School, among others.  Art donations from the Agua Dulce Elementary School, Paiz Carnewal and the students of Vasquez High School, Paraclete High School Students, and Roberta Patterson and her students contribution of Angel block prints from Millikan High School, Long Beach, were just some of the highlights of the children’s and student art displays.

An article was written in the Los Angeles Daily News Friday, May 10, 2013, about Jack’s Angels, the event, and the need for pediatric brain tumor research.  Dr. Girish Dhall of the neuro-oncology department at Children’s Hospital Los Angeles contributed to the article, and was instrumental to the idea of Jack’s DIPG research fund.  Although the generosity of those who participated in the event was heartfelt and significant, the needed amount to open the fund was not achieved.  However, because of the Daily News article written and the awareness from the event that was raised, the Mod Hatter’s of Acton donated the proceeds from their golf tournament later in 2013 to help Jack’s Angels open the fund.

Jack’s Angels would like to continue benefiting the fund with events that benefit art for children.  Also, Jack’s Angels gives special packages of encouragement including art materials to those afflicted with DIPG.   Raising awareness for the cause while promoting the arts for children in the local community remains a priority for Jack’s Angels.