Jared's Quest for a DIPG cure

Every minute, every day, every month is important to our kids in fighting cancer, but one month stands out, it's September. The whole community comes together. We learned that we don't all have to be in Washington, DC for people to participate in CureFest, the biggest event every year for kids and the cancer fight. This year CureFest 2025 can be anywhere you are! There will be huge events in Washington this year AND it will be virtual again too. Checkout all the information here and plan now to participate. https://www.curefestusa.org

On September 19th - 21st. Let's band together against childhood cancer at CureFest 2025. It gets bigger and better each year. There are a lot of activities this year that will enable us to spread awareness across the USA and around the world! Register now. You can be there in person or attend virtually again this year. https://www.curefestusa.org

Acknowledge feelings: Encourage children to express their feelings and acknowledge any concerns they have about death.
Be patient: Children's grief may not be obvious right away.
Use simple language: Avoid euphemisms and use direct language.
Ask questions: Ask exploring questions instead of giving answers.
Be a good observer: A bereaved child's behavior can indicate their emotions.

Sad but true !

Childhood Cancer is scary. It kills more children than all other diseases combined in the USA.

Our Little Jaja would have been 17 years Old. Hard to imagine it's been 9 years already since he became an Angel. We miss you Jared.

I guess this says it all about funding for children cancer.

According to the National Cancer Institute (NCI), "Cancer in children and young adults is different from cancer that develops later in life. Childhood cancers usually do not act like adult cancers and are not treated the same way." Why have we developed and approved more that 220 cancer drugs for adults, while the FDA, through 2023 has approved a total of 42 drugs for use in the treatment of childhood cancers. 35 of the 42 drugs were originally approved for adult use. Today we have only seven drugs that were approved in the first instance for use in cancer treatment for children: Clofarabine (2004 for ALL), dinutuximab (2015 for NB), tisagenlecleucel (2017 for ALL), calaspargase pegol-mk (2018 for ALL), selumetinib (2020 for NF1) naxitamab (2020 for NB) and eflornithine (Iwilfin) (2023 for HRNB). More facts are available from the Coalition Against Childhood Cancer Fact Library https://cac2.org/impact-areas/awareness/childhood-cancer-fact-library/

This is a great story. I had the privilege of meeting the parents, sadly, while our kids were fighting DIPG. They continue to be non stop fighters for this cause. This is a great way to help all parents strugling with sick children and remembering Kat.

Montreal free stay for out-of-town parents of sick kids in hospital | CityNews Montreal A new “home away from home” will open in Montreal for out-of-town families whose sick children are receiving care at the Children’s Hospital.

September is children cancer awareness month.

Various pictures of Jared and his brothers. First day of school , Halloween, daycare , Soccer practice....we miss our little JaJa !!

Some interesting news on how to open the Blood Brain Barrier. Now lets see what chemo cocktail agents will respond to DIPG.

Canadian doctors perform world-first delivery of treatment for inoperable brain tumour in kid using ultrasound Canadian physicians have successfully used MRI-guided ultrasound to deliver chemotherapy to an inoperable brain tumour in a child – a world-first for this type of technology.