TeamNEGU Blog

DIPG Awareness Day and How You Can Help

May 13, 2022

May 17 is DIPG Awareness Day; a day dedicated to raising awareness and encouraging research on DIPG (diffuse intrinsic pontine glioma) tumors. Less than 4% of federal funding for cancer research is directed to childhood cancers. Of that 4%, only 1% is dedicated to researching pediatric brain tumors, including DIPG. More funding and research will help advance treatments and bring families more support during their journey.

DIPG is a rare, highly aggressive brain tumor that is very difficult to treat. It forms in glial cells in an area of the brainstem called the pons, which controls many of the body’s most vital functions.

According to the National Brain Tumor Society, DIPG, is the leading cause of childhood brain tumor deaths. Every year, 200-400 children in the U.S. will be diagnosed with DIPG, and most of them will only survive nine months, or about as long as the typical school year. Awareness is crucial, as there is currently no consistent standard of care for these kids, and few treatments available.

DIPG.org states that despite the many challenges in treating DIPGs, doctors and scientists, assisted by patients and their families, continue to work diligently toward finding new and more effective therapies for children with DIPGs and other brain tumors. Though progress has been slower than desired, they continue to make incremental advances in understanding the biology of challenging cancers like that of DIPG.

Our founder and inspiration, Jessie Rees, also battled DIPG. During her courageous fight from March 3, 2011, to January 5, 2012, all she wanted to do was help brighten the day of her peers who were unable to leave the hospital. This brave desire to help, led to the creation of her fun-filled JoyJars® and her NEGU – (Never Ever Give Up) message. Learn more about Jessie and her JoyJars® here.

Ways to Make an Impact:

GIVE

  • Donate to help the Jessie Rees Foundation send 1,000 JoyJars® to kids fighting DIPG and other cancers by May 31st
  • Start a Facebook fundraiser and rally your friends to help us reach our goal

ACT

  • Donate blood or platelets – Childhood cancer patients often need blood products on a regular basis during chemotherapy, surgery, or treatment for complications
  • Volunteer – Help spread joy to kids fighting DIPG and other pediatric cancers. Volunteer with the Jessie Rees Foundation today!

RAISE AWARENESS

  • Share ClubNEGU – our free encouragement program for families fighting Childhood Cancer – on social media, in support groups, and with families you know are navigating this awful journey called childhood cancer
  • Go Gray in May – Wear gray in support of kids fighting DIPG and other brain tumors. Especially on May 27th, which is National Gray Day. Post a picture showing your support or share facts from our blog, with the hashtags #BTAM and #NEGU. Be sure to recruit friends to do the same! 

Stay connected with the Jessie Rees Foundation on Facebook and Instagram as we work every day to care for and encourage Courageous Kids fighting brain tumors and other pediatric cancers to Never Ever Give Up!

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