“Raising awareness is so important to dispelling the assumptions about people with FTD – I wish for people to see my dad the way I see him.” – Kristin Pursley, FTD care partner

Kristin Pursley describes her dad, Bryce, as “a modern Renaissance man.” He loved co-directing and singing in his church choir with his wife, Karla; watching sports; and enjoying the outdoors with his family. Some of Kristin’s favorite memories with her dad include swapping Carolina Panthers and UNC Tarheels game highlights, as well as soaking up the summer sun on the beaches of North Carolina.

Gradually, she started to notice concerning changes in his behavior and that her dad was becoming less interested in what had once given him so much joy. Shortly after leaving his career for a prominent North Carolina power company in 2013, Bryce was diagnosed with bvFTD at the age of 59. Determined to cherish every moment with him, Kristin moved in with her parents to help care for her dad.

“The first few years I was home with him, he would play piano music throughout the day,” she said. “We sang a duet together before he stopped playing – I am so grateful for that.”

For Kristin, being a care partner for someone with FTD is a journey of loss and grief, but also one that is filled with love and compassion. “I now understand what it is to miss someone so profoundly and deeply, even when they’re right next to you,” she says. “Being involved with AFTD allows me to feel engaged and be proactive in raising awareness on behalf of my dad.”

Through AFTD, Kristin has found resources and participated in webinars to help her care for her dad, as well as a community that is advocating for all who are impacted by FTD. She hopes that with more awareness, persons diagnosed and their families will have increased access to high-quality support services, and that research will lead to an end to this disease.

As a care partner and AFTD grassroots event host, Kristin is all in to end FTD: “I chose to share my dad’s story through AFTD’s With Love campaign because I believe love is more powerful than any disease. I want to show how much my dad is loved, and to be an advocate for him and others who are affected by FTD.”

Will you join Kristin in supporting AFTD’s mission? Together, we can demonstrate the power of a community that is all in to #endFTD. By making a tax-deductible gift of any amount, you can advance AFTD’s mission to improve the quality of life of people affected by FTD and drive research to a cure.