Hope and Empowerment through Advocacy for a Father
Curtis Hanson and his wife, Kristen, are parents to two incredible girls Kaia, 6 and Emma, 4. Both of their daughters have an Angelman syndrome diagnosis of UBE3A mutation. When they received the diagnosis, Curtis said it felt like “so much was taken from us as parents. I often use the analogy that ‘I felt like the wind was taken out of my sails.’ But through my involvement in rare disease advocacy, I have started to feel more and more hopeful, useful, constructive and empowered.”
As a parent to two children with AS, advocacy and community are extremely important. Curtis is currently a member of the ASF Advocacy Committee and participated in the Rare Across America, an event where rare disease advocates across the country had the opportunity to meet with their federal legislators close to home in the state and district offices. In these meetings, he discussed accessibility and affordability of any future therapeutics for those with AS. Something that is a common concern among the AS and rare disease community.
In a world of so much uncertainty, when asked why he pours so much into rare disease advocacy, his response is one so many parents can resonate with ‘because there is HOPE, but only if we continue to work hard for it and keep pushing as a community to drive toward therapeutics’.
Advocacy can help all parents feel more hopeful and more empowered, just like Curtis and Kristen Hanson. Thank you, Curtis for your work on the ASF Advocacy Committee!