September’s Volunteer of the Month: Nicole DeLeve

Volunteer of the Month Nicole DeLeve hosting an AFTD table setting in her local community

When Nicole DeLeve’s father was diagnosed with ALS with bvFTD in 2016, she found herself exhausted from constantly advocating for him with doctors, nurses, and facility staff who didn’t understand FTD. “When he passed, I wanted people to keep advocating for him, but in a more fun way, so I started doing fundraisers.”

For over five years, Nicole has been an avid Food for Thought host in her home state of Kansas. “Almost every year for Food for Thought I have hosted Cupcakes for Dad. It’s a fundraiser to celebrate my dad’s birthday, and to bring as much awareness to FTD as I can through one of my favorite activities – baking,” she shares. “With every order of cupcakes that goes out I send a pamphlet [about FTD] with them. I have had several people reach out to talk about FTD. I think this activity helps spread awareness, gives people resources, and lets them know they are never alone.”

In addition to her involvement in Food for Thought, Nicole has also raised awareness by hosting several table settings at events in her community. For Nicole, the most rewarding aspect of volunteering is connecting with caregivers whose loved ones are diagnosed with FTD, or face a potential diagnosis. “I know that road can be very lonely, and I don’t want anyone to travel it alone.”

All of us at AFTD are immensely grateful to Nicole for her commitment to raising awareness and funds in support of AFTD’s mission. If you’re interested in becoming a volunteer, you can get started by filling out our volunteer form.

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