Partner Spotlight: McKenna Claire Foundation

After McKenna Claire Wetzel passed from diffuse intrinsic pontine glioma (DIPG), her family made the courageous decision to donate her brain and spinal cord to research.

McKenna’s mom Kristine said donating McKenna’s tumor tissue “has made all the difference for us, knowing that she is still here in a sense, working to save the next child diagnosed. It has given us some peace, knowing that her death was not in vain and that our spunky, sassy, loving girl lives on to fight another day.“

McKenna passed away surrounded by loved ones, exactly six months after her diagnosis in 2011. She was just two weeks shy of her eighth birthday. McKenna’s family donated her brain and spinal cord to Dr. Michelle Monje’s lab at Stanford University to further research on DIPG.

On their decision to donate, Kristine said, “If we were going to lose our precious daughter to this disease, then we were going to make sure that we did whatever we could to help ensure that no other child or family would have to endure this nightmare.”

In the weeks following McKenna’s tumor donation, a cell line was established at the Monje lab that has now been shared freely for DIPG research around the world. McKenna has been involved in studies and clinical trials in hundreds of institutions in multiple countries.

The Wetzel family’s desire to honor McKenna’s legacy and perpetuate the sense of community that lifted them up during their darkest time moved them to establish the McKenna Claire Foundation. Their mission is to cure pediatric brain cancer and to celebrate McKenna’s passion for life by bringing joy to others’ lives.

The McKenna Claire Foundation is committed to supporting cutting edge research and has granted about $4 million. They are initial funders of the Vitanza lab at Seattle Children’s, where neuro-oncologist Dr. Nicholas Vitanza is the study chair for BrainChild-04.

BrainChild-04 a first-in-human phase 1 clinical trial for children, teens and young adults with recurrent or refractory brain and spinal cord tumors. These include patients with DIPG. This pioneering trial uses a CAR T-cell product that targets four antigens at the same time to stimulate the immune system to engage and kill cancer cells. This could represent a leap forward in the treatment of children like McKenna with DIPG.

The Wetzel family continued to travel after McKenna’s diagnosis, pictured here on vacation in Hawaii. McKenna loved all things that had to do with the beach. She loved snorkeling and chasing sea turtles with her sister Jordan in Hawaii.

McKenna was a vivacious and athletic little girl with an infectious grin and a huge heart. She brought joy to all those around her. McKenna approached her treatment with stoic courage and never lost her sense of humor. 

After diagnosis McKenna continued to swim, play guitar, sing, and draw when she could. Her friends rallied around her and created the Tuesday Homework Club, which wasn’t so much about homework, but rather about the joys of friendship. She continued to enjoy and excel at school, receiving advanced rankings on standardized tests. Her sister, Jordan, and best friend, Sophie, kept her entertained at home.

The Wetzel family has a long and deep partnership with Gift from a Child (GFAC). McKenna’s parents, Kristine and Dave, sit on our Advisory Council and the Wetzels are a GFAC Founding Family. The McKenna Claire Foundation also provides funding to GFAC. In addition to partnering with GFAC, the McKenna Claire Foundation works with DIPG Navigator and the DIPG/DMG National Tumor Board.

We are proud to be associated with such a caring, impactful family and foundation and look forward to our continued partnership as we work together to accelerate scientific discoveries and better treatments for children with brain cancer.