AFTD Ambassadors
Ambassadors know the power of a single story. They know the power of finding others who understand.
Ambassadors are volunteer leaders who represent AFTD in communities and states across the United States. They raise awareness of FTD through networking, outreach, speaking engagements and attending events on behalf of AFTD. They connect people affected by FTD or those working on their behalf with the organization and its resources, information, and opportunities to get involved.
Jerry Horn | Alabama
After his wife was diagnosed with PPA, Jerry raised his hand to volunteer with AFTD in 2017. As a volunteer, Jerry has hosted a Meet & Greet, raised funds through campaigns such as Food for Thought, With Love, and the #FTDhotshotchallenge, and has helped other volunteers host fundraising events as a Food for Thought liaison. Jerry is also a Support Group Volunteer. He was invited to join AFTD’s first Ambassador team in 2019 and covers southern Alabama, eastern Louisiana, coastal Mississippi, and western Florida. As an Ambassador, Jerry has made vital connections with healthcare professionals in his area, educating them on FTD and AFTD through numerous presentations. In his own words, Jerry shares why he volunteers with AFTD: “I gladly volunteer with AFTD because there is strength in numbers. Working alongside a nationwide army of volunteers, I know that I am helping make a difference in the lives of families facing the challenges of FTD both now and in the future.”
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 US. He has a master's degree from the University of Arkansas. Tim proudly served in the U.S. Army for over 20 years. He has a passion for working with people affected by dementia. Tim is a Certified Alzheimer’s Disease and Dementia Care Trainer with the National Council of Certified Dementia Practitioners.
Terry Walter | California
Terry formally joined AFTD’s volunteer network in 2017, although she has been involved with the organization for many years. Her first golf tournament to raise funds and awareness was in 2008. As a volunteer, Terry has connected others affected by FTD in her area through multiple in-person Meet & Greets, and raised critical funds through her annual Food for Thought event and the #FTDhotshotchallenge. Terry was invited to join AFTD’s first Ambassador team in 2019 and covers northern California and the Reno/Lake Tahoe region, Nevada. In her Ambassador role, Terry has made important connections with other organizations to further AFTD’s partnerships. She also continues to host Food for Thought events every year. She has established and is soon launching the "Steven Walter Fund for Hope and Support” to assist others affected by FTD in their lives. Terry shares why she volunteers with AFTD: “I volunteer because as a Christian, my God says we need to help those who need help. I choose AFTD because of the pain and suffering FTD has caused those that I have loved very much.”
Dan Moser | Florida
Like so many others, Dan became aware of AFTD when he and his wife, Maria de Leon, SLP, were attempting to obtain a diagnosis other than “some kind of early-onset dementia.” For several years, Maria’s many physicians were unable to make a diagnosis more specific than that. But thanks to information they found on AFTD’s website, by the time Dan and Maria visited the Mayo Clinic for answers in 2015, they were pretty sure the diagnosis would be svFTD/PPA, which was exactly the case. It was not good news, but at least they knew what they were dealing with. AFTD has remained Dan’s go-to source for FTD-specific information and resources. After Maria’s diagnosis, Dan found there were no FTD support groups in southwest Florida, so he teamed up with another local AFTD volunteer and caregiver to start one up in Fort Myers. Maria passed away in 2023, leaving a big void in Dan’s life. Becoming an AFTD Ambassador was a logical next step. Dan hopes to build awareness beyond his local community by taking on this role.
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 he was seven years old, and then 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 there will be a cure for this horrible disease.
Dawn Kirby | Illinois
Dawn decided to bring more awareness to FTD after her daughter Kara was diagnosed with bvFTD in February 2019 at age 29. She gave interviews with local media and podcasts, presented an FTD Lunch & Learn to her local mental health clinic, and hosted an AFTD Food for Thought fundraiser with her family. Dawn and her husband Tim were Kara’s primary caregiver until, sadly, Kara passed away on New Year's Day 2023. Their loss gave Dawn an even greater passion to advocate for those affected by FTD in any way. She became an AFTD Ambassador in spring 2023 and attended her first AFTD Ambassador Summit and Education Conference in St. Louis. Dawn wants to help raise awareness in rural communities in Illinois and western Indiana in hopes to bring more timely diagnoses, and by sharing Kara’s story, she hopes to advocate for those diagnosed at very young ages. "I volunteer with AFTD because I agree with their mission, support their cause, and hope to be an asset to the organization as I bring purpose to our pain and honor Kara's memory,” Dawn said.
Deb Scharper | Iowa
Deb joined AFTD’s National Volunteer Network in 2015. Throughout her volunteer tenure, she’s raised critical awareness by sharing her family’s story in the media and staffing AFTD information tables at community events, has brought others affected by FTD together through Meet & Greets, and raises funds through her annual Crusade for the Cure golf tournament. She’s also led a Mason City-based support group for the past seven years. Prior to joining the inaugural Ambassador team in 2019, Deb served as the Midwest Regional Coordinator, AFTD’s former volunteer leadership position. As an Ambassador, Deb continues to raise awareness and educate others in Iowa, southern Minnesota, and Wisconsin's La Crosse region while being an advocate and caregiver for her loved one with FTD.
Elaine Rose | Maryland
Elaine’s husband, Bob, was diagnosed with bvFTD in 2007 while they lived in Pittsburgh, Pa. He was 55. She and Bob moved to Maryland in 2008, just outside Washington D.C., to be closer to the family. After attending one of the first AFTD Education Conferences, she embraced the organization and became a volunteer, leading a support group, and contributing to AFTD newsletters and the 2020 AFTD publication Walking with Grief. Bob died in 2015. Elaine continues to facilitate her support group and is proud to join the team of AFTD Ambassadors. “I credit the resources and staff at AFTD for getting me through Bob’s illness,” she says. “I wholeheartedly support their fine efforts. We are all lucky to have them.”
Dawn O'Gara | Massachusetts
Dawn began volunteering with AFTD in 2019; her father sadly passed from FTD in 2022. Prior to taking on the Ambassador role in 2021, she served as a Food for Thought liaison, supporting volunteers throughout the country as they planned events for AFTD’s annual flagship campaign. She’s also raised funds for AFTD’s mission through the #FTDhotshotchallenge and independent fundraisers, and raised awareness by sharing her family’s story in the media. As an Ambassador, Dawn works to spread awareness and educate those throughout Massachusetts. “If I can help anyone to not feel as lost and confused as we were when we received my Dad's diagnosis, I feel it is important to do so. I just know I need to help get awareness and education about this disease out there,” she said.
Dawn Ducca | Michigan
Dawn began volunteering with AFTD in 2019. As the former primary caregiver for her husband before his untimely death in 2022, she’s passionate about raising awareness and supporting others affected by this disease. Prior to joining the Ambassador team in 2021, she raised awareness in her community through presentations and was an active participant in AFTD’s annual flagship campaign, Food for Thought, as both a host and then liaison, supporting volunteers around the country with planning their own events. As an Ambassador covering the Southeast Michigan, Northern Indiana and Northwest Ohio area, she continues to raise awareness, educate others, and be a voice for FTD, including ensuring FTD is represented in her local dementia-friendly community.
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 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.
Scott Oxarart | Nevada
Scott’s father, Steve, was diagnosed with FTD in 2021. After witnessing his dad's severe decline, Scott dedicated himself to educating people about FTD, with hopes that future families won't have to go through FTD alone, or at all. Scott became an AFTD Ambassador in August 2024, one year after his father's passing. Scott's professional expertise is in writing and public relations. He enjoys learning about emerging developments in FTD and working with those impacted to better understand the disease. Scott has successfully pitched local media in Reno, Nev., to do stories about FTD, and has participated in the podcast Remember Me with Rachael Martinez and Maria Kent Beers. #EndFTD
Shirley Gordon | New Hampshire
Shirley has been active with AFTD since 2008, when her beloved husband Mike was diagnosed with FTD. Her volunteer activities include representing AFTD at local events, hosting Food for Thought fundraisers, taking part in speaking engagements, and facilitating support groups. Shirley has also done legislative work for caregivers, and is a Certified Dementia Practitioner and Caregiver Coach. In 2023, AFTD nominated Shirley for a seat on the Advisory Council on Alzheimer's Research, Care, and Services, which was established by the federal National Alzheimer’s Project Act. Since Mike’s passing in June 2020, Shirley has dedicated herself to educating and supporting folks affected by FTD, Alzheimer’s disease, and other dementias. She is honored to represent AFTD as an Ambassador for New Hampshire, and passionately hopes that someday we will find the cure for FTD
Sandra Gonzalez-Morett | New Jersey
Sandra joined AFTD’s National Volunteer Network in 2018 after her mother, Diana, was diagnosed with behavioral variant FTD and corticobasal syndrome. Since then, she has shared the role of primary caregiver of her mother with her sister, Diana Lauren, and father, Hector. Sandra is the associate producer and consultant of Pedacito de Carne, a Netflix-sponsored short film inspired by caregiving for her mother. She looks forward to using the film to raise awareness and advocate for families caring for a loved one living with FTD. In support of further research, Sandra is part of a study at the Penn FTD Center in hopes to one day help #endFTD. As an Ambassador, Sandra will continue spreading awareness and educating her community in Northern New Jersey and surrounding areas, both in English and Spanish.
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.
Jerry Lazarus | North Carolina
Jerry joined as an AFTD volunteer in 2020 while caring for his wife, who is living with FTD. Driven to offer support to others in his area, Jerry began his volunteer journey by hosting a virtual Meet & Greet for North Carolina with two other volunteers. Since then, he has continued to bring his expertise as a doctor to the organization through educational and advocacy efforts. Jerry became an Ambassador in 2021 and covers northern North Carolina. Since then, he organized a very successful information table at a Duke Caregiver Conference. Utilizing his professional background as an academic physician, Jerry has been trying to organize activities to educate local healthcare providers, including nurses and physician assistants, about FTD and AFTD resources.
Judy Bearer | Ohio
Judy has worked as a social worker in Northeast Ohio for over 30 years, but her years of experience in mental health and long-term care didn't prepare her for FTD. When her mother was officially diagnosed with primary progressive aphasia (PPA) in 2020, she became passionate about learning as much as she could about the disease and using her personal experience and professional connections to raise awareness and advocate for those affected. When Judy found AFTD and connected to others who understood this disease, she felt like everything fell together, and that this was where she was meant to be. Volunteering for AFTD brings Judy a sense of hope. As an AFTD Ambassador, Judy hopes to raise awareness about both FTD and AFTD, so others can see that they are not alone. Her motto is, "This disease took my mother's voice. I will not let it take mine."
Melissa Fisher | Oregon
Melissa began volunteering with AFTD in 2018 to honor her father, who is living with FTD. “Ever since we received a diagnosis for this terrible disease, I’ve vowed to raise awareness and funds for this organization that gives all of us hope and so much help,” she said. As an active member of the AFTD-Team, she raises critical funds for AFTD’s mission through With Love, Food for Thought, Charity Miles, the #FTDhotshotchallenge and Race Season. Melissa joined the inaugural Ambassador team in 2019 and continues to raise awareness and educate others through presentations, sharing her family’s story, and networking with local professionals in Oregon and Maui.
Scott Rose | Oregon
Scott has been active with AFTD since 2018. His wife, Maureen, was diagnosed with primary progressive aphasia in early 2016. He cared for her until her passing in late 2019. Scott has facilitated a caregiver support group in Oregon since 2019, and now co-facilitates the national men's caregiver support group. He continues to spread FTD awareness by speaking on podcasts and at conferences and similar events. In 2023, he was asked to speak about FTD’s impact on language and other senses to an audience of 50 speech-pathology graduate students at Chapman University in California. Scott released a book in 2021, We Danced: Our Story of Love and Dementia, in which he recounts his wife's pre-FTD life, their marriage, and their FTD journey. He continues to do book readings at venues across the country, and is now chronicling the grief journey to share with others.
Amber Steed | South Carolina
Amber’s husband, Brad, died at age 58. Despite enduring four years of misdiagnoses, undergoing improper and ineffective cognitive behavioral therapy and marital counseling, and seeing neither results nor progress, Amber continued to push for an accurate diagnosis. Despite having a nursing and psychological background, she met many slammed doors. Eventually diagnosed with bvFTD, Brad experienced a rapid onset of ALS symptoms and died in August 2022, just seven months after diagnosis. Amber began volunteering with AFTD, educating medical professionals on the symptoms of FTD and raising awareness of the many resources available through AFTD. She attended her first AFTD Education Conference in 2024. Her passion is to see the path to diagnosis shortened and to work with families navigating this brutal disorder. She will do this to honor her husband’s legacy.
Katie Zenger | South Carolina
Katie joined AFTD’s volunteer network after her dad was diagnosed with FTD in 2014. In 2016, Katie took on a volunteer leadership role as a Regional Coordinator, where she managed volunteers in the southeastern region. As a volunteer, Katie pulls from her professional background in public health to educate her community by presenting FTD information to caregiver groups and health care professionals, representing AFTD at conferences and providing information for attendees, and advocating for all who have been touched by this disease. She also raises funds to drive AFTD’s mission through campaigns such as With Love and the #FTDhotshotchallenge. Katie was invited to join AFTD’s first Ambassador team in 2019 and covers South Carolina. As an Ambassador, she continues to educate healthcare professionals through presentations and advocate for families affected by FTD.
Zoy Kocian | Texas
Zoy learned about AFTD after her mom was diagnosed with FTD in 2012. She began attending support group meetings with her dad that year and volunteered for her first AFTD event shortly after that. Zoy soon became committed to raising awareness about AFTD and FTD through volunteer-driven campaigns like With Love, Food for Thought, and the AFTD-Team. Her efforts led her to become an AFTD Regional Coordinator Volunteer in 2016, and while she stepped down from that role in 2019, about a year after her mother passed away, she never stopped her fundraising and awareness efforts. In 2024, after co-hosting an AFTD Meet & Greet and attending the AFTD Education Conference, Zoy decided to get more involved with FTD advocacy by becoming an AFTD Ambassador.
Joanne Linerud | Washington
Joanne joined AFTD’s National Volunteer Network in 2016 to spread awareness and support those affected by FTD after losing her mother to ALS and FTD. Over the last six-plus years, Joanne has done just that through countless information tables and presentations, hosting in-person and virtual Meet & Greets, raising funds through Food for Thought and the #FTDhotshotchallenge, and more! Prior to joining the inaugural Ambassador team in 2019, she also served as the Northwest Regional Coordinator, AFTD’s former volunteer leadership position. As an Ambassador, Joanne continues to raise critical awareness and educate others throughout Washington and northern Idaho.
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.
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