Chuck Anastasia found solace and encouragement in an AFTD online support group after his wife, VJ, received her FTD diagnosis. Several of the care partners he encountered in that group encouraged him to get more involved, and because of the deep gratitude Chuck felt toward families who shared their FTD experiences with him, he wanted to find a way to give back – both by aiding others in their FTD journeys and helping to break down the stigma of dementia. Becoming a volunteer for AFTD was therefore the natural next step for him.

Since becoming a volunteer in August of 2017, Chuck has had many impactful experiences. At the 2017 AFTD Education Conference, he and VJ co-facilitated a breakout session about online support groups. With approximately 35 people in attendance, a lively and interactive discussion ensued, which energized Chuck and VJ and helped solidify their commitment to serving our community.

A few months later Chuck and VJ were invited to participate in a panel discussion at a patient information day in Boston that was organized by AFTD and a pharmaceutical company conducting neurological research. Sharing their story with a large team of research scientists felt like a valuable contribution, especially when they were approached afterward by one of the researchers: She said that although she had been working on FTD research for over a decade, this was the first time she had actually met anyone with FTD in person.

Later that summer the couple were the subjects of an awareness video for AFTD called VJ & Chuck, which premiered at AFTD’s Hope Rising benefit in 2017. That video now has over 6,800 views on YouTube, and has been shared with VJ’s medical team, who have gone on to share it with their colleagues, spreading ripples of awareness out into the world. Chuck and VJ have also screened the film as part of their Com amor e Alimento para o pensamento fundraising events for AFTD.

Most recently, when an AFTD-affiliated support group facilitator from Rhode Island moved out of state, Chuck stepped up and volunteered to take over as co-facilitator of that group. Chuck hopes that his passion and commitment as a volunteer for AFTD will inspire others to get involved: “Sharing the practical knowledge and coping skills we’ve gained along the way gives meaning to this challenging experience. Helping others is one of the best ways we can help ourselves.” 

Chuck’s wife, Valerie Jeanne “VJ” Anastasia, died peacefully on Feb. 13, 2019. She was 62 years old. AFTD continues to extend heartfelt condolences to Chuck and the entire Anastasia family.