When my son was first diagnosed with craniopharyngioma in 2011 at age 8, I recall feeling so relieved when I learned that my son's brain tumor was "benign." Little did we understand at the time that this benign brain tumor would wreak havoc on our lives in profound and everlasting ways.
In the past 15 years through our own experiences and through my advocacy work as the board chair of Raymond A. Wood Foundation, I have seen that a "benign" classification does not equate "fine." Craniopharyngioma, a rare tumor that affects 1.3 of 1 million in the population, causes chronic medical conditions, some of which are disabling and/or life threatening. Additionally, craniopharyngioma is associated with the worst quality-of-life of all pediatric brain tumors.
To raise awareness, I created this PSA called "Benign is not fine" where survivors and caregivers affected by this brain tumor address some of the ways they have been impacted in the wake of the brain tumor diagnosis and treatment. I hope that "Benign is Not Fine" can be shared to educate the public and used for advocacy purposes to help pass laws such as Bolstering Research And Innovation Now (BRAIN) Act (H.R.2767 / S.1330).
Category: Short Film
Rare Disease: Craniopharyngioma (Caregiver)
Birth Year: 1966
