Name
Eugenie Hsu

Brain Tumor Type
Craniopharyngioma

Date of Diagnosis
August 25, 2011

Participant Group
Caregiver/Family Member

Category
Drawing/Painting/Printmaking/Chalk Art

Artist Statement (include type of art, techniques & materials used, what it means to you)
Surviving craniopharyngioma is no easy feat. Survivorship comes at the cost of dealing with a dizzying array of doctor appointments, hospitalizations, fistfuls of medications, sleep studies, daily injections, irregular electrolytes, emergency department visits, MRI scans, IEPs, social isolation, visual impairment, chronic hunger, absent thirst, temperature dysregulation, blood draws, clinical trials, etc. Survivorship also comes with the need to learn, accommodate, compromise, and handle feelings including sadness, longing, loneliness, anxiety, hopelessness, anger, frustration, grief, acceptance, and hope. The life changes after craniopharyngioma are experienced by the survivor and their family members.

“...to the beat of his own drum” is a 12” x 12” oil painting of my son, Alex, now in his 14th year of survivorship after the craniotomy to resect the brain tumor. Looking back over the years, I am in awe of everything he has gone through since the craniopharyngioma diagnosis and aftermath of treatment. Despite the many challenges on his brain tumor journey, Alex meets his challenges with a “can do” attitude: our rock band, the Bassments, needed a drummer after our drummer left the band, so Alex started taking lessons. For the last year, he has been the drummer in our band, and he's doing great!

This painting is a tribute to Alex for his rock steady perseverance and upbeat attitude (double puns intended). Despite the challenges of life after craniopharyngioma, Alex is thriving and living his life “to the beat of his own drum.”


Artist Bio: Tell Us Your Story
I am the mother and caregiver to Alex, 22, and serve on the board of directors of the Raymond A. Wood Foundation. I began drawing and painting in 2022 and have found art to be a very enjoyable hobby and an effective way to spread awareness about rare disease.

As one of EveryLife Foundation's Rare Artist awardees, I was able to go to Capitol Hill during Rare Disease Week 2025 with my painting, "The Art of Surviving Craniopharyngioma". Sharing my painting with congress members and staff, I was able to advocate about the need to reauthorize the Priority Review Voucher Program in order to incentivize the development of drug treatments for pediatric rare diseases and the importance to continuing to defend the funding and staffing of our federal biomedical research institutions.

In addition to using my art for brain tumor survivor advocacy, I enjoy organizing art and music community events, playing bass in my band, singing in the Oakland Jazz Choir, and painting just for the sheer pleasure of it. My favorite subjects are portraits, cityscapes, and still life. Follow my art on Instagram @sumodoux.