Helen-Ann Comstock, who founded the Association for Frontotemporal Degeneration (AFTD) in 2002, died on July 30 at the age of 92. Her vision was simple yet profound: no other family should have to endure FTD without adequate resources, information, and support. Following her own husband’s painful, confusing, and lonely FTD journey, Ms. Comstock transformed her hard-won lessons into an organization that today provides help and hope to families worldwide facing this devastating disease.
AFTD’s roots trace back to a support group Ms. Comstock started in the Philadelphia area in the 1990s for people who had loved ones with FTD – then more commonly called Pick’s disease. During meetings, she shared her own family’s experience. Her husband, Craig, a mathematics professor, had been diagnosed with Pick’s disease in the late 1970s after a Swiss doctor administered five days of tests during what was supposed to be a working sabbatical. The family was baffled. Craig had previously been diagnosed with Alzheimer’s, and finding information even about that disease had been nearly impossible. Now they faced an even rarer condition. Information on Pick’s wasn’t just scarce: it was nonexistent.
Craig left his job, and his condition quickly deteriorated. Within six months, his once formidable attention span dwindled, and he soon became unable to speak or feed himself. “It was sad to see someone so bright and able continue to decline,” Ms. Comstock later recalled. Craig died at age 50. “There was nothing we could do to stop it,” she said.
After Craig’s death in 1984, Ms. Comstock worked for more than a decade as executive director for the Southeastern Chapter of the Alzheimer’s Disease and Related Disorders Association. But she remained frustrated that so little attention was being paid to funding FTD research and support on the federal level. When she expressed her feelings to her friend, neurologist Dr. Jordan Grafman, he told her, “Until there’s a national FTD organization, nothing much is going to happen. So why don’t you start one?”
Ms. Comstock took action. In May 1999, she and other members of her support group organized the first-ever national conference devoted entirely to FTD, attracting several hundred people to Philadelphia, including researchers, healthcare professionals, and care partners. “One researcher who attended told me, ‘I’m trying to find a cure for FTD, and this is the first time I’ve gotten to talk to somebody with the disease,’” Ms. Comstock later recalled.
In 2002, she established AFTD, making a $1,000 donation. Ms. Comstock served as AFTD’s Board chair for its first eight years and continued as a Board member until her death. Her tenure included remarkable milestones: forming the Medical Advisory Council, launching the AFTD HelpLine in 2005, awarding the organization’s first research grant that same year, establishing a partnership with the Alzheimer’s Drug Discovery Foundation, and holding AFTD’s first public meeting in 2008 – the precursor to today’s annual AFTD Education Conference.
“Helen-Ann didn’t merely found AFTD, she imbued it with her personality – her intense focus, her profound empathy, and her fierce advocacy for FTD families,” said AFTD CEO Susan L-J Dickinson. “Her work helped so many people living with a diagnosis – people who would otherwise have had nowhere to turn for FTD information and support – and her passion for FTD research drives our organization to this day.”
In 2022, Ms. Comstock reflected on AFTD’s growth and future. “As the FTD field grows – and I do think we can take credit for a lot of that growth – we must make sure that we keep funding enough research and keep putting time into supporting families and professionals – especially those in underserved areas,” she said. Asked about her hopes for AFTD’s future, she replied, “I hope that [we will have] found a cure or prevention for FTD, [and] I hope that we’re able to make life a little easier for those still coping with FTD.”
Ms. Comstock’s legacy lives on in the countless families who have found community, support, and hope through AFTD. Her generosity of spirit in devoting her life to this cause continues to inspire the organization’s work today. Because of her vision and determination, no family facing FTD has to walk that difficult path alone.
In lieu of flowers, the family requests that donations in Ms. Comstock’s honor be made to AFTD, at https://giving.classy.org/campaign/713129/donate.
AFTD CEO Announces Retirement
After 18 years of transformative leadership, AFTD CEO Susan L-J Dickinson will retire in May 2026. Under her guidance, AFTD grew from a three-person organization with a $400,000 budget to the country’s largest FTD-focused nonprofit, with over 50 staff and a $12 million budget. The AFTD Board has established a task force to lead a comprehensive search for a successor committed to the organization’s 2025-2028 Strategic Plan. Learn more at wwwtheaftd.org.
Funding Received For Next Phase of ALLFTD Study
The ALLFTD study has received NIH funding for its next phase, ALLFTD2. This natural history study collects critical data on FTD progression, supporting disease detection and clinical trial development. Since 2019, ALLFTD’s 28 North American sites have evaluated over 3,000 participants, completing 6,500+ study visits. ALLFTD2 will build on these achievements with improvements to assist clinical trial design. Stay tuned for more information in the new year.
AFTD Marks World FTD Awareness Week
During World FTD Awareness Week (September 21 - 27, 2025), AFTD urged people to get involved in building a global community of support and action for everyone facing FTD. Under this year’s theme, “What If It’s FTD?”, the campaign raised awareness of the presenting symptoms of FTD and contrasted the disease with other forms of dementia, particularly Alzheimer’s disease. The message: FTD typically first appears as changes in behavior, personality, and language, not memory, and has its own distinct challenges: the younger age of onset, the greater caregiving burden, and the impact on families when FTD is transmitted genetically.
A single donation in 2009 established the Respite Care Financial Assistance program, created to help lighten the financial strain that so often accompanies an FTD diagnosis. In that first year, AFTD issued grants to 20 caregivers.
Renamed in honor of AFTD’s founder, Helen-Ann Comstock, the Comstock Grant program now supports, on average, 700 people annually.
In 2025, AFTD awarded 680 grants, up to $500 each, to people affected by FTD:
Each grant enables people like Gay, Mary, and Shelley to purchase assistive devices, hire professional care services, attend FTD-related educational conferences, access programs to improve their physical and mental well-being, and cover medical and prescription costs.
“I can’t thank [AFTD] enough for this grant. It means so much and has honestly blown me away. The generosity is beyond my dreams.”
– Shelley Warner, care partner for her husband David
“I value and appreciate the Respite Grant program. It’s a blessing to have an opportunity to take care of myself. This provides me with a positive outcome to be a better and loving caregiver for my loved one. Thank you!”
– Mary Thran, care partner for her husband Richard
“Thank you so much for this grant! It helps so much in many different areas - it helps offset the pressure that we have daily. I appreciate AFTD so much!”
– Gay Passafiume, care partner for her husband Russ
Your support for this vital program and AFTD’s mission will help people affected by FTD today while advancing research for earlier, more accurate diagnosis and the first disease-modifying therapies. Make a gift by using the enclosed envelope or by clicking here.
Together, we can improve the journey for all who face this disease.
Together, we are paving the path forward to #endFTD.
Girish Patangay joined the AFTD Board this past summer for reasons deeper than professional credentials: a lifelong friendship and a convergence of purpose.
Girish’s connection to AFTD begins with Lee Holloway, his childhood friend and neighbor from Cupertino, California. The two grew up inseparable—sharing rides to school, eating at each other’s homes, and spending weekends together. “Lee would call himself Lee Patangay when he joined our family trips,” Girish recalled with a smile. Their bond was so close that Lee invited him to join him as a co-founder of Cloudflare, an internet security and network services firm. When that didn’t work out, they continued to plan ways to continue their friendship in a professional setting. “We were sitting at my kid’s birthday party chatting, and we were like, ‘Yeah, let’s go do a company together,’” he said. “I think shortly afterwards he got diagnosed and the whole world changed.”
That diagnosis would eventually lead Girish to AFTD. A couple of years ago, Lee’s wife, Kristin, who became close to AFTD and eventually a major benefactor, mentioned the organization needed technical expertise for the FTD Disorders Registry. With his background in engineering, IT, and security, Girish was perfectly positioned to help. He reviewed contracts, negotiated with vendors, and provided ongoing technical guidance. This year, former Board member Jary Larsen, PhD, reached out to Girish about joining the Board.
Girish brings a unique perspective to AFTD as one of the few Board members without a relative diagnosed with FTD—though his connection to Lee runs deeper than many familial ties. His day job as an AI specialist at the Chan Zuckerberg Initiative (CZI) positions him at the forefront of how artificial intelligence can accelerate disease research. “AI is really good at taking the entire information [set] and just kind of
compiling it together and finding related things,” he explained. “Think of like every single research paper out there about AFTD, and all the researchers combining their work.”
His vision for the Registry is ambitious but urgent, and the growing Registry dataset is a nearly perfect application of PAI’s potential in progress toward treatments and a cure, he believes. But the time is now. “I don’t want us taking a couple years to start collecting the data or start making those connections. Because that could be many, many, many lives lost or impacted.”
Girish sees his roles at CZI and AFTD as complementary. “CZI is coming at it from a very general ‘let’s go look at all diseases, let’s do advances in science,’ and AFTD is kind of coming from the bottom up,” he said. “One part of my job comes from the top and the other part of the job comes from the bottom. And I see both perspectives.”
Beyond AFTD, Girish contributes to the Pancreatic Cancer Network following his mother’s death last year—one of her final requests was for him to help find a cure. He lives in Los Altos with his wife Angie, sons aged 14 and 10, and two cats. His father, a retired computer scientist, lives just ten minutes away and maintains a 3,000-square-foot vegetable garden. The family eats dinner together four to five times a week.
For Girish, joining the AFTD Board represents a chance to honor his friendship with Lee while using his expertise to accelerate progress in the AFTD domain. “This completes the other side of things for me,” he said.
Science has progressed to the point that there are now more treatment ideas to slow or halt disease progression in clinical trials than ever before. However, with that progress, new areas of scientific challenges have arisen around how to efficiently and accurately test whether treatment is effective and safe for people with FTD. The science of FTD clinical trials is the focus of AFTD’s FTD Research Roundtable.
In September, AFTD hosted the 3rd Annual FTD Research Roundtable in-person meeting. The meeting theme is selected by Roundtable members and focuses on making the science of FTD clinical trials more efficient. This year, the theme was around measurements that assess whether a therapy is working, also known as clinical outcome assessments. Stakeholders from academia, the biopharmaceutical industry, government & regulatory representatives, nonprofit partners, persons with lived experience of the disease, AFTD staff & Board, and others spent the meeting engaged in vibrant discussions around this topic and seeking to identify opportunities for cross-disciplinary collaboration.
The meeting opened with an evening welcome reception and was followed by two dynamic days of scientific talks, solution-oriented discussions, and networking opportunities. Scientific experts spoke about the current state of these measurement tools, how they are being evolved to promote more effective clinical trials, and key considerations for the future of FTD drug development.
Some highlights of the meeting included:
- Development of harmonized clinical outcome assessments from ALLFTD and GENFI may offer improved tracking of disease progression.
- Careful validation protocols can enable remote assessment tools to be used in regulatory-grade clinical trials to support in-clinic assessments and reduce outcome ascertainment bias.
- Qualitative data on the lived experience of disease is often missing, despite being essential for regulatory understanding of the clinical meaningfulness of a given outcome assessment.
- Analytical methods relying upon robust, accessible longitudinal data offer the potential to reduce the number of trial participants, in-person site visits, and placebo exposure.
The Annual FTD Research Roundtable in-person meeting is one component of an ongoing consortium led by AFTD and known as the FTD Research Roundtable. Organizations join who, typically in pre-clinical and clinical stage FTD trials, are focused on advancing disease modifying therapies for FTD. The 2025 FTD Research Roundtable members is composed of representatives from twelve biopharmaceutical companies, the U.S. Food and Drug Administration, the European Medicines Agency, The Bluefield Project to Cure FTD, Rainwater Charitable Foundation, the Critical Path Institute, and AFTD. The Roundtable is one of AFTD’s approaches to promote effective clinical trials and increase the number of potential treatments in development.
The 2025 FTD Research Roundtable in-person meeting was led by Dr. Jonathan Rohrer (academic co-chair, UCL) and Dr. Arthur Simen (industry co-chair, Johnson & Johnson) alongside the leadership committee members: Dr. Howard (Howie) Rosen (academic chair-elect, UCSF), Dr. Gary Romano (industry chair-elect, Temple University), Dr. Michelle Campbell (FDA), Dr. Steffen Thirstrup (EMA), Dr. Joseph Marquez (FTD Family Advocate), Dr. Laura Mitic (The Bluefield Project to Cure FTD), and Dr. Penny Dacks (AFTD).
More information on the FTD Research Roundtable can be found at theaftd.org/for-researchers/ftsg.
Understanding whether FTD has a genetic basis has become more crucial than ever—for those affected, their loved ones, scientific progress, and therapeutic development.
The National Society of Genetic Counselors (NSGC) FTD/ALS Working Group has issued a call for genetic counseling and testing to be made available to everyone receiving an FTD spectrum disorder diagnosis. Following thorough review, AFTD has revised its stance to support these updated recommendations: All people diagnosed with FTD should be offered genetic counseling and testing.
This marks a shift from previous guidance, which emphasized providing genetic counseling and optional testing primarily to those with familial FTD history. Evidence shows that as many as 10% of individuals diagnosed with genetic FTD lack any documented family history of FTD or associated conditions.1,2
Developed with support from the AFTD Medical Advisory Council this recommendation captures the collective perspective of experts who acknowledge the increasing significance of genetics in FTD management and investigation.
This recommendation pertains exclusively to those with confirmed FTD diagnoses, not to family members who may be at risk.
The Significance of This Evolution
Broadening genetic counseling access and testing availability for all FTD-diagnosed individuals delivers multiple critical advantages for patients, families, and the scientific community.
Validates and defines diagnosis - Genetic testing can substantiate an FTD diagnosis, particularly valuable given the variable presentation of symptoms and their tendency to resemble other medical conditions. A definitive genetic finding enables clinicians to customize treatment approaches and project future care requirements.
Enhances clinical management - Understanding whether someone’s FTD has genetic origins helps medical providers predict specific symptoms, coordinate multidisciplinary treatment, and develop more personalized care strategies.
Facilitates future preparation - A genetic diagnosis enables families to make emotional, practical, and financial preparations for what lies ahead. It also opens pathways for family discussions about whether other relatives wish to explore their own potential predisposition.
Increases clinical trial participation - Many trials need confirmed genetic diagnosis for enrollment. Wider testing availability means greater numbers of people will qualify for experimental treatments and studies designed to delay or halt FTD symptoms.
Accelerates treatment accessibility - Genetic counseling and testing require significant time. Following approval of a new treatment for a genetic variant of ALS, it became evident that certain individuals experienced delays in receiving care due to unknown genetic status. We aim to eliminate such obstacles to immediate care within our community.
Essential Information for Medical Professionals and Families
Genetic testing must always incorporate genetic counseling both before and following the test. A genetic counselor assists individuals and families in:
- Comprehending what testing reveals and its limitations
- Evaluating the emotional and practical consequences of results
- Reaching an informed choice about whether genetic testing is right for them
- Strategizing how to communicate information with family members
Learn more from the AFTD Webinar How to Find a Genetic Counselor, consult theaftd.org for genetic counseling and family support materials, and consider telehealth counseling if available. Your neurologist can provide a referral. Additional information can be found at https://www.theaftd.org/?p=39559
References:
- Greaves CV, Rohrer JD. An update on genetic frontotemporal dementia. J Neurol. 2019;266(8):2075-2086. doi:10.1007/s00415-019-09363-4
- Ramos EM, Dokuru DR, Van Berlo V, et al. Genetic screening of a large series of North American sporadic and familial frontotemporal dementia cases. Alzheimer’s & Dementia. 2020;16(1):118-130. doi:10.1002/alz.12011
On October 21, 2025, Alector Therapeutics announced results from their Phase 3 INFRONT-3 clinical trial evaluating latozinemab (AL001) for people with FTD caused by variants in the progranulin (GRN gene). See Alector’s press release here: http://bit.ly/4hoZcRq
Disappointingly, the trial did not reach its intended clinical endpoint, changes in a scale that measures FTD symptoms called the Clinical Dementia Rating® plus National Alzheimer’s Coordinating Center Frontotemporal Lobar Degeneration Sum of Boxes (CDR® plus NACC FTLD-SB). While latozinemab did result in elevations in progranulin, the treatment did not result in changes in this primary clinical outcome measure, nor other markers of disease progression such as additional biomarkers and imaging data. For more information, see AFTD’s press release here: https://bit.ly/42VO8FE
Based on the results, it is expected that the active open label extension and the continuation study will be closed. People who participated in the trial can expect to hear directly from their trial site and should direct questions to their local site contact.
While it is disappointing when a clinical trial does not meet its intended goals, any trial that finishes recruitment and results in meaningful data, especially in a rare disease like FTD, is a step towards effective treatments. We applaud the people who participated in the trial as well as their families. Volunteering as a research participant is an extraordinary sacrifice, and the only way the science can progress. AFTD is also grateful to the trial investigators and investors who prioritized FTD research.
Luckily, there are many researchers actively investigating other methods of addressing FTD caused by GRN variants, such as through gene therapy. Learn more about other FTD-GRN trials by watching AFTD’s Genetic FTD Clinical Trial Landscape session (www.youtube.com/watch?v=TNkZ-uQa-EY&t=3s) from the Education Conference and exploring other FTD studies currently enrolling participants (ftdregistry.org/find-a-study/). Further, researchers are looking at ways to better understand and intervene in FTD caused by other genes as well as sporadic FTD.
We know many people in the community have questions and concerns about these results. AFTD is working on scheduling a virtual Town Hall in the next few weeks to give the community an opportunity to connect and get questions answered. Stay tuned for more information on date and time.
Ways to stay informed:
- Sign up for AFTD’s Science Digest newsletter. (www.theaftd.org/posts/category/ftd-science-digest/)
- Enroll in the FTD Disorders Registry (ftdregistry.org) to stay informed about new clinical trial opportunities as they emerge.
Chiadi Onyike, MD, a neuropsychiatrist and director of Johns Hopkins University’s Frontotemporal Dementia and Young-Onset Dementias Clinic, has been named the new chair of the AFTD Medical Advisory Council.
Dr. Onyike takes the reins of the council at a time when global FTD awareness and clinical trials for potential FTD treatments are gaining momentum.
“It’s hard to believe how far FTD science has advanced in recent years, but there is still much work to be done,” Dr. Onyike said. “I look forward to furthering this progress with my fellow council members, who represent some of today’s brightest minds in FTD care and research.”
As chair, Dr. Onyike says he will continue the important work done by his predecessors – including immediate past chair Dr. Bradford Dickerson, MD, of Harvard University – while encouraging deeper, more frequent collaboration with AFTD staff, particularly on emerging developments in FTD clinical care and prevention.
Another goal that Dr. Onyike has set for his term is to encourage Medical Advisory Council members to become public faces of FTD science. “The FTD field is poised for significant breakthroughs in treatments and care,” he said. “The AFTD Medical Advisory Council should be the public’s go-to source for knowledgeable voices who can explain those breakthroughs as they happen – why they are important, what they mean for the FTD community, and how they can further dementia research and care generally.”
Throughout his career, Dr. Onyike has worked to diagnose and care for people with FTD and other young-onset dementias. He has also conducted important research into the epidemiology and treatment of FTD and other neurodegenerative disorders, including Alzheimer’s disease and Lewy body dementia.
He brings a depth of experience advising national and international research agencies and philanthropic organizations, including AFTD, the National Institutes of Health, and the Food and Drug Administration in the U.S., the Medical Research Council in the U.K., the Tau Consortium, and other partners.
The 29 volunteer members of the Medical Advisory Council provide AFTD with the medical, scientific, and research expertise necessary to advance our mission.
Dr. Onyike’s term as chair will last until 2028. Current Medical Advisory Council member and chair-elect Carmela Tartaglia, MD, of the University of Toronto, will succeed him.
“Our Medical Advisory Council is a crucial resource for AFTD guiding us in setting a strategic, impactful agenda and working to ensure that our efforts are successful in moving toward accurate diagnosis, effective therapies, and equal access to appropriate and compassionate services,” said AFTD CEO Susan L-J Dickinson, MSGC.
“With Dr. Onyike at the helm, and Dr. Tartaglia to follow, our community is clearly in good hands for many, many years to come,” she said.
Over the past year, AFTD’s 200+ awareness volunteers have made a significant impact, telling the story of FTD and of AFTD’s mission, resources, and activities. How are they doing this? Through setting up information tables at various types of community events, hosting Meet & Greets for those directly impacted by FTD and connecting them to resources, giving AFTD presentations in a wide variety of settings around the country, identifying mass media opportunities to tell their stories—or posting on their own social media feeds and podcast interviews—and through distributing custom packets to offices of healthcare professionals.
These awareness activities have seen unprecedented growth: over 280 undertaken over our fiscal year, which ended June 30, 2025! This is a 112% increase over the previous year. The explanation is simple: More volunteers are stepping up to help. Also, over the past year, our volunteer engagement coordinators have simplified our training and made helpful, clear training videos, equipping prospective volunteers with everything they need to be successful and to make a lasting impression.
How to quantify “impact?” For the first time, AFTD is tracking results and setting ambitious goals for future years. For instance, in fiscal 2024-25, our volunteers were responsible for
- About 5,200 people stopping by our tables.
- More than 1,400 seeing a presentation made by a volunteer.
- More than 310 people directly impacted by FTD were connected by Meet & Greets.
We want to continue growing this awareness around the country. Want more information on how to help AFTD raise awareness in your area? Go to theaftd.tfaforms.net/133 to sign up for a live information session with one of our volunteers to find out more.
At this writing, Congress has failed to pass legislation to appropriate funding and keep the federal government open, leaving questions about a path forward to continue funding for federally supported research and government programs important to people with FTD and their families. AFTD is tracking this issue closely. Despite this unfortunate setback in the appropriations process, AFTD is pleased to report that work prior to the government shutdown indicated that FTD research funding will be prioritized.
This summer, the Senate Appropriations Committee approved its version of the FY 2026 Labor, Health and Human Services, Education, and Related Agencies funding bill, which sets the federal spending levels for agencies such as the National Institutes of Health (NIH). The bill provides nearly $49 billion for NIH overall, with increases for research on related dementias, rare diseases, and other major public health priorities. Notably, the detailed report that accompanies the bill, outlining how Congress expects funds to be used, includes new language directly recognizing the value of the ALLFTD study as a key resource for discovering biomarkers and preparing for future clinical trials. In early September, the House Appropriations Committee released its version of the bill, which also contains report language supporting ALLFTD.
This underscores Congress’s understanding of the critical role NIH plays in building the foundation for future treatments for FTD. Having strong support for ALLFTD written into both the House and Senate reports is a major advocacy win and helps guide NIH’s funding priorities.
The House bill recommends a total of $47.8 billion for the NIH, including $2.63 billion for the National Institute of Neurological Disorders and Stroke (NINDS) and $4.5 billion for the National Institute on Aging (NIA). It also proposes modest increases for Alzheimer’s and related dementias research, though at a level lower than that requested by NIH itself. This makes AFTD’s ongoing advocacy for robust federal investment in FTD research all the more important.
Together, the House and Senate appropriations committees’ actions demonstrate bipartisan recognition of the need to strengthen dementia research and support the development of new tools for diagnosis, treatment, and prevention. Having language on FTD included in both bills sends a clear signal that Congress views these investments as a national priority.
Looking ahead, the House and Senate must still reconcile their two versions of this bill before sending it to the President for his signature. The government shutdown is significantly shaping those conversations, but AFTD remains deeply engaged to ensure that FTD remains a priority as a final funding agreement is finalized.
This year marked AFTD’s 13th annual Food for Thought campaign—our baker’s dozen. The campaign included 39 events across 21 states and internationally into Canada and Greece. The combination of these events and every host’s hard work raised more than $230,000 for AFTD’s mission! Below are the fundraisers that raised over $6,000 (at the time of this writing) from their event:
Steve Bellwoar is a passionate AFTD Board of Directors Alumni. He held the 12th annual Colonial Electric Food for Thought event in memory of his mother, Trish, who passed away in 2021 from FTD. Steve’s event raised more than $73,232, bringing his 12-year total to over $1,118,000 raised for AFTD’s mission!
Julie Smith and her committee returned as a host this year to hold their annual Hops for Hope event at Next Chapter Winery in New Prague, MN. Together, they raised $30,000 to further research efforts under AFTD’s mission--increasing their 3 years grand total to $74,785!
Mike Brucklier is the Director of Operations at Flour Bakery. This year they brought back the AFTD Red Oreos at their New York location and also asked their customers to round up their change to support to AFTD’s mission at their Cambridge location. Both fundraisers brought in $10,000 for AFTD’s mission.
Darryl Bartlett, and his stepdaughters Joellen and Jenn hosted a fundraiser where they sold raffle tickets and pledged 50 percent of that day’s sales from their restaurant A Little Pizza Heaven in Scranton, PA in honor of his wife Toni, who is living with FTD. Pie after pie. Slice by slice, they raised $8,286.
Colleen Franzreb and her family brought back their 2nd annual Big Time’s Chili Contest, welcoming more than 100 guests to taste ten chili maker’s creations. Their contest, in memory of Ed “Big Time” Costello, raised $7,552, bringing their two-year streak to $14,796 to put an end to FTD!
Terry Walter brought back her wine tasting event with the Lincoln Woman’s Club to honor her family who have been deeply impacted by FTD and ALS. Her 12th wine tasting event raised $7,136 from ticket sales and raffles. This brings her total funds raised through just Food for Thought to a whopping $51,577!
University of Mississippi student Amelia McKinley raised $7,193 by fundraising on social media, sharing educational content with her sorority sisters, and hosting an informational table featuring baked goods in honor of her mother, Melanie. Fins Up Ole Miss!
AFTD Ambassador Judy Bearer hosted her first Food for Thought golf outing in memory of her mother, Ruth. The event honored her mother’s love of baking with her father’s love of golf and raised $6,460.
Thank you to all the amazing Food for Thought hosts who also raised additional awareness of FTD and funds to support AFTD’s mission through the campaign.
Alexis Conway
Amy Bouschart-Callea
Brandee Waite
Carolyn Gandy
Cathy Tully
Ella Gough
Esther Harvey
Gavin Johnson
Hannah Hickman
Jeanne Cestone
Jerry Horn
Joanne Linerud
Joe Pang
Julia Smith
Karine Finken
Katarina Dominguez
Kathy and Sara LaFone
Kim Stasa
Liz Zadnik
Lynda Nagle
Melissa Dube
Melissa Jacobson
Michelle Greco
Molly Hagwood
Niki Toscani
Patrick Gutierrez
Ryan Windhorst
Sharon DeFelices
Wendy Martin
Shelley Warner
Stephen Boyajian
Independent Events
The following Independent Events raised $5,000 or more for AFTD’s mission since our Summer 2025 issue:
The Sidoris Family hosted the 20th annual GFS Memorial Golf Outing at the Lost Nation Golf Course on August 2, 2025. As AFTD’s longest-running volunteer-led fundraiser, the event brought the community together raising $91,000; bringing their grand fundraising total to $529,750.
Zach Fenoglio and friends hosted the annual Bonnie Brae Classic at Red Hawk Ridge Golf Club in Castle Rock, CO on June 21, 2025. The event raised $23,000 for AFTD with additional proceeds going towards the Jimmy McGann Memorial Scholarship at Gonzaga University.
Gail Rink, who lives with FTD, and her husband Chris hosted a bike ride along Lake Missaukee on August 2, 2025, ending in a party and cookout by the water. This community-wide event raised $14,781 to end FTD.
Jay Donnelly, Mike Donnelly, Mike McDermott, and their U.S. Naval Academy classmates completed a 1,200-mile Gulf to Goat ride from Florida to Maryland in October 2025. During their journey they raised $14,426 for AFTD.
Glenna Creek and Kelly Collins ran the Detroit Marathon in honor of their mothers, Dana and Carla, who are living with FTD on October 17, 2025. They ran together mile after mile, raising a combined $9,624 for AFTD’s mission.
Elica Sharifnia and Team Persian Version ran the 2025 Hood to Coast Relay on August 22–23 in memory of Elica’s father, Hamid. The team covered 200 grueling miles and raised $9,193 in support of AFTD’s mission.
Todd Hartzog and friends held the 4th annual Dustin Snyder Memorial Golf Outing this past June, in Fort Wayne, IN. The event, along with a full day of fun, was held in memory of Dustin and raised $8,480 for AFTD’s mission.
Kendra Hatfield ran the Niagara Falls Half Marathon on October 26 in memory of her father and brother. Both Kenny and Jason were diagnosed with FTD in their early 40’s. She raised $5,609 to support AFTD’s mission and help other families on the FTD journey.
Thank you to all our other fundraisers who also raised awareness and funds to support AFTD’s mission through their own events:
Ana Gaither
Bree Parr
Catherine Sharpsteen
Chelsea Lawerence
Colleen Walsh
Courtney Smith
Deb Scharper
Ed McAndrew
Eli Derrow
Erin Walla
Sam Leverson
Sherlin George
Shoshana Derrow Krilow
Spencer Cline
Terry Walter
AFTD’s 2025 Driving Hope Golf Tournaments made a successful return to Colorado National Golf Club in Erie, Colorado on August 10 and Metropolis Golf Club in White Plains, New York on September 29. It was a great time to reunite with old friends and meet new ones, all while boosting AFTD’s mission. As always, we are humbled by the generosity of our sponsors, participants, and supporters. Through both events a total of $190,000+ was raised for AFTD’s mission!
AFTD would like to extend a sincere thank you to everyone who supported these events, especially our generous sponsors:
Golf Cart Sponsor
TPG
Putting Sponsor
Amidebio
Hole Sponsors
Alan and Joan Berlin
The Rose Family
The Hedaya Family
DAX Real Estate
Mack Real Estate Group
Dansker Capital Group
Jane Goldman
LCN Capital Partners
The Hudson Advisory Team
First Horizon
A.D. Real Estate Investors
Nighthawk Supper Club
General Sponsor
David Pfeifer
Refreshments Provided By
Buffalo Trace Distillery
Casamigos
In-kind Sponsors
DeCicco & Sons
Hudson River Museum
New York Theatre Workshop
Dixon Golf
AFTD would also like to take this opportunity for a special shoutout to the tournament’s committee members: Michael Stowell, David Pfeifer, Daniel Hedaya, Brian Rose, Joan Berlin, Jill Goldman, Betsy Bartosiak, and Jason Nagin
