A Birthday Wish: Make May 17th National DIPG Awareness Day
May 17th is a meaningful day for the CBTFF family.
Not only is it a day that 31 states (yes, 31!!!) recognize as DIPG Awareness Day but it is also a day that we celebrate the birth of Caitlin Downing who is the daughter of CBTFF President and Founder Denise Downing.
Let’s start at the beginning.
What is DIPG?
Well, as you probably understand by now, brain tumors are the deadliest of all childhood cancers and Diffuse Intrinsic Pontine Glioma (DIPG) is the 2nd most common malignant brain tumor of childhood and the leading cause of death due to brain tumors among children. The median survival time is only 9 months post diagnosis with treatment and a 5 year survival rate of less than 1 percent.
Every year between 200 and 400 children are diagnosed with DIPG. Of the six families who lead the CBTFF, two of them, Cheering for Caitlin and Team Juliana, both center around children who were diagnosed and lost their lives to DIPG.
Juliana Donnelly was born on April 2nd, 2007 and diagnosed on her birthday 5 years later with Diffuse Intrinsic Pontine Glioma (DIPG). She battled her diagnosis until Monday August 19th, 2013 when she earned her wings and became forever six.
Brian and Doris focused on leaving no stone un-turned in fighting to save the life of their daughter. They traveled weekly for Juliana's treatments and to seminars in search of a cure. They researched and studied this dreaded disease and fought every day for Juliana's comfort.
They continue to fight by joining and supporting the CBTFF and working to fund important DIPG and other pediatric brain tumor research.
Caitlin was born on May 17th, 2007 She was diagnosed with a Diffuse Intrinsic Pontine Glioma (DIPG) on January 13th, 2012. On May 1st, she became the very first patient in Phase 1 of Dr Mark Souweidane’s of the Children’s Brain Tumor Project (CBTP) clinical trial for DIPG. She had a radioactive drug injected directly into the tumor cells invading her brain. Read her full story and learn more about the great work being done at the CBTP here. Although the procedure was deemed successful and the learnings meant Caitlin’s contribution was immeasurable, Caitlin earned her wings 10 months later making her forever five.
Denise Downing, Caitlin's mother, much like other parents of children stricken with DIPG, has become a vocal advocate and supporter of more research, helping to found the CBTFF in 2015 and leading the charge as President of the organization. She recently wrote a beautiful journal entry with a message to all surrounding the meaning she finds in Caitlin’s birthday.
“May 17th, and Caitlin’s birthday, is another reminder about how short life is. It is an opportunity to let people know how much we love them and what they represent and signify to us and our lives. This is a recognition of the fragility of life, and what we are supposed to do; live our lives fully and completely, leaving no day wasted, no thoughts or feelings unsaid, and no actions left for ‘later.’ May 17th is a gentle nudge to make sure we are saying what we need to say, and doing what we need to do, and that we live each day entirely and with intention.”
The 5th Annual Cheering for Caitlin 5K and Festival
This Sunday, May 19th, Denise and Jeff Downing, Caitlin’s parents, are hosting the 5th annual Cheering for Caitlin 5K and Festival in Oviedo, Florida. They are expecting hundreds of runners, maybe as many as 1,000 if the weather is nice! It’s not too late for you to join them locally or sign-up as a virtual runner and run/walk your 5K whenever and wherever you want. Register here until midnight May 17th and starting at 7am on Sunday..
What’s our wish?
For Caitlin’s birthday, and for all the families and children who have suffered a diagnosis of DIPG we wish for better. Better awareness. Better funding. Better treatments. There has been no change in the survival rates for DIPG in more than 40 years. In fact, there has been no change in either the standard treatment nor the terminal prognosis for DIPG since Neil Armstrong’s daughter died in 1962. (Read more)
Advocate and Hope for H-Res 114
On February 11th, 2019 Congressman Dave Joyce (OH-14) and Congresswoman Jackie Speier (CA-14) introduced a bipartisan resolution known as H.RES 114 which “calls for expanded research on possible treatments, encourages entities to factor in the mortality rate and number of life years lost when considering awarding research grants and, if passed, would support designating May 17th as National DIPG Awareness Day.” We wish for this, a “National Awareness Day” with all our hearts and we wish for continued support of the research and the doctors studying this insidious disease and working so hard to create a better survival rate.
What can you do?
Download an easy-to-read synopsis from the DIPG Advocacy Group with a support letter you can send to your representatives in the house of congress for H. RES. 114. The resolution is in front of the health sub-committee and we hope to hear that it has been agreed soon!
In the meantime, run or walk the 5K, share this post on your social channels, make a donation to the research, ask your representatives to support H.RES.114, or simply send positive thoughts and energy to Congress, to the families that fight DIPG and to the team at the CBTP making tremendous strides in research and treatments. And as Denise Downing says “live each day entirely and with intention.”