The AFTD Ambassador program was launched in 2019 as a new opportunity for AFTD’s volunteer leadership. Since then, the initial cohort of Ambassadors has grown into an enthusiastic, highly motivated group that works year-round towards the goal of a future free of FTD.

Ambassadors are volunteer leaders who represent AFTD in communities nationwide, identifying opportunities to further AFTD’s mission. With 2024 underway, among many other awareness-raising activities in the works, the Ambassadors are preparing to drive advocacy supporting legislation crucial to national research efforts, raise awareness of FTD and available resources in underserved communities, and empower those impacted by FTD to make better-informed decisions about participating in research.

AFTD is excited to welcome six new Ambassadors to the program, which now encompasses 20 Ambassadors in 18 states:

Tim Lindsey | Arkansas

Tim lives in Bella Vista, Ark., with his wife Kim. He has been a volunteer with AFTD since 2019. Since 2022, Tim has been a director of operations with Visiting Angels. He became involved in health care in 2009 as an operations manager and a director of operations in home care, and later co-owned a home care franchise.

Tim worked in senior living management from 2016 to 2022 as an executive director, regional director and senior director of operations overseeing memory care facilities throughout the U.S. He has a master’s degree from the University of Arkansas, and proudly served in the U.S. Army for over 20 years. Tim has a passion for working with people affected by dementia: he is a Certified Alzheimer’s Disease and Dementia Care Trainer with the National Council of Certified Dementia Practitioners.

Spencer Cline | Georgia

Spencer became familiar with FTD at a very young age, as his father started exhibiting behavioral changes shortly after he was born. His dad was diagnosed with bvFTD when Spencer was seven years old, and was eventually diagnosed with the C9orf72 genetic variant, which is linked to both FTD and ALS.

After watching his dad fight the disease until he passed in 2012, Spencer developed a passion for spreading awareness in hopes to find a cure – a passion that has only grown with time. He has organized multiple fundraising/awareness events with the Babson College men’s basketball team, and spoke via video at the 2023 AFTD Education Conference, hoping to connect others who share similar genetic journeys. Becoming an AFTD Ambassador gives him another way to continue his path of spreading awareness, fundraising, and making a difference, with the hope that there will be a cure for this horrible disease.

Nanci Neveaux Anderson | Minnesota

Nanci has been active with AFTD as a volunteer since 2016, when her late husband was diagnosed with FTD. Through the years she has represented AFTD at local events around the Twin Cities, such as Meeting of the Minds and the University of Minnesota’s Rare Disease Day. She also facilitated local caregiver support groups.

She has raised funds to support AFTD’s mission through the #FTDHotShotChallenge, With Love campaign, and Food for Thought fundraisers in her community. Although her husband passed in 2019, her passion for FTD education, awareness, and caregiver support continues.

Gail Goodman | New York

Gail lives in New York’s Hudson Valley. She became involved with AFTD in 2018, a year before her ex-husband died of FTD. She had never heard of the disease until he was diagnosed in 2014, at which point she began to understand the damage it did to their marriage and family, and became involved to help others avoid the same fate.

Since then, she has led a support group in the Hudson Valley; she has found it gratifying to help others, and has learned what support means to people going through the experiences of caregiving and grieving a loved one. She hopes to raise awareness of the disease in the Hudson Valley and to continue to give comfort and support to others impacted by FTD.

Jackie Shapiro | New York

Jackie first learned about AFTD in October 2020, when her mother was diagnosed with bvFTD and learned that the progranulin (GRN) mutation was the cause, despite there being no family history of dementia. Since then, Jackie has used social media as a platform to educate others about FTD, advocate for caregivers and families, and discuss genetics and genetic testing.

She has also become a resource for other “daughters and sons of FTD” to discuss the unique dynamic of being a young adult who has a parent with this disease. She has been featured in a caregiving documentary, interviews, and several podcasts, and works with pharmaceutical companies to educate their staff on FTD and how to work with families dealing with dementia. She is excited to be part of the AFTD community as an Ambassador and hopes to continue to fight FTD until there is a treatment or a cure.

Debbie Elkins | West Virginia

After her husband’s journey to an FTD diagnosis, Debbie became an AFTD volunteer and hosted her first Food for Thought fundraiser. With a passion to raise awareness in her community and to make connections with others in rural areas of West Virginia and southeast Ohio, Debbie was invited to become an Ambassador in 2023.

Working with AFTD staff, she began provider outreach visits hoping to connect the local medical community and others to AFTD. As a registered nurse, Debbie hopes to use her voice to bring FTD awareness to the public, provide education, and point families to the “gold mine” of resources and support that AFTD offers.

Are you interested in volunteering with AFTD? Visit the Volunteer with Us page to learn more about how you can work towards a future free from FTD!