Jack's Angels Foundation Supporting CHLA DIPG Research

I've always found that parents are the ones that care most about DIPG.  It is the parents that are the ones that go on fighting against DIPG hoping that one day other parents will not have to endure the same fate as their family.  And it has made a difference.   The parents that have donated their children's tumors, started foundations, created DIPG awareness, funded DIPG research and have brought researchers together collaboratively have made a changed the landscape for DIPG.

Jack's Angels Foundation is another parent-founded and led foundation in memory of a child who died from DIPG.   The Foundation had their first fundraiser earlier this month hosting an art action ofchildren. student and trained artists' works.  The proceeds are to go to Children's Hospital of Los Angeles DIPG Research.

Jack was just 3 years old when on October 28, 2011 he was diagnosed with a DIPG.  Having difficulties with hs speech and right side and a sudden fear of looking up he was admitted to CHLA.   Like so many children Jack had radiation and steroids which gave him time to go to Disney and ride the bus to preschool.  With an eye on quality of life and an eye on hope, the family relates the CHLA doctors gave the "wisest possible cousel concerning available chemotherapies" and that he avoided losing precious time pursuing other therapies that have not been effective.  Just 9 months later, Jack was born into Light on July 30, 2012.

Jack's Angels Foundation has formed to continue to fight agaisnt DIPG with funding of research at CHLA.

CHLA is one of the Pediatric Brain Tumor Consortium institutions.  The physicians and researcher there have been quite interested in DIPG for some time.   In fact, this has been one of the sites that has been specifically looking at imaging characteristics of these tumors.  Although the trial is not open yet at CHLA, they collaborators of the upfront biopsy trial with molecularly determined treatment.  Through the PBTC they are participants in the Imetelstat trial for recurrent DIPG.  And through COG they are participants in the Vorinostat trial for newly diagnosed children with DIPG.

The news article says that CHLA and UCSF are working together and with other hopsitals in a loose consortium of researchers looking for new methods to treat DIPG.  Clearly the upfront biopsy trial fits the bill as both institutions are involved.   However, UCSF has also been doing great work on the advancement of understanding and treatment of pediatric brain tumors- from intranasal administration of agents to unravelling the importance of the K27M mutation.  Since there are so few children with DIPGs, these collaborative efforts are important in pushing research forward as well as disseminating results as quickly as possible.

I am glad to hear this first art auction was a success- hopefully one of many more to come.

Reference-
3-year old's death from rare brain tumor prompts Agua Dulce mom to help find a cure
http://www.dailynews.com/ci_23211490/3-year-olds-death-from-rare-brain-tumor

Jack's Angels Foundation
http://jacksangelsfoundation.com/

Apparent Diffusional and Fractional Anisotrophy of Diffuse Intrinsic Brain Stem Gliomas
http://www.ajnr.org/content/31/10/1879.long

A simple way to change the future

I personally know of 135 children who have passed away because of a DIPG since my daughter Alicia was diagnosed with this terrible cancer in 2005. After their children were diagnosed, these 135 families had about 12 months to accomplish a lifetime of dreams with their children. They will never see their child go on their first date, drive a car, graduate from high school, get married or have their own child.

Diffuse intrinsic pontine glioma is one of the worst brain cancers, with no real effective treatment and no cure. Some doctors believe finding a cure for DIPGs may very well lead to a cure for all brain tumors. We desperately need to fund research. We need to change the future for our children and grandchildren.

Thank you for supporting Just One More Day and helping us raise awareness for DIPGs. Now I'm asking you to take it a step further; I'm asking you to visit http://www.firstgiving.com/21687 and develop your personal page to benefit Just One More Day for Love, Hope and a Cure.

If 100 of our wonderful supporters donate just $5.00, we would raise $500.00. But, if each of us sets up FirstGiving page and 50 of our friends donate $5.00, the amount we raise increases to $25,000.00. With this money we could begin funding a research protocol - the first step to finding a cure.

Starting a page at FirstGiving.com is quick and simple. After your page is ready, you can e-mail it to friends, family and colleagues. You will continue to raise awareness about this rare disease and will also allow those who wish to help to donate by credit or debit card in an easy, secure, online transaction. Please take a moment and look at my daughter's FirstGiving page at http://www.firstgiving.com/jomdashley and consider her plea for an answer to the question that changed her life.

Together we can make a difference. Together we can find a cure.

Thank you for your time and support.
With Hope,
Christine Martin
Angel Alicia's Mom
http://www.firstgiving.com/jomdchristine