Helen-Ann Comstock, who founded AFTD in 2002 to ensure that no other family would have to endure FTD without adequate resources, information, and support, died on July 30. She was 92.

Following her husband’s FTD journey – a painful, confusing, lonely ordeal – Ms. Comstock took the lessons she learned and used them to create AFTD. Today, AFTD is a globally recognized organization that provides help and hope to all facing this disease.

The entire organization is united in mourning Ms. Comstock’s passing. Her vision for AFTD as a source of community and support continues to guide our work. And the generosity of spirit she showed in devoting her life to this cause inspires us every day.

AFTD’s roots can be traced to a support group Ms. Comstock started in the Philadelphia area in the 1990s, for people who had loved ones with FTD. At the time, FTD was more commonly called Pick’s disease, although that name is rarely used today. During meetings, Ms. Comstock shared her own family’s experience – her late husband, Craig, had been diagnosed with Pick’s disease in the late 1970s. After Craig died in 1984, Ms. Comstock worked for more than a decade as the executive director for the Southeastern Chapter of the Alzheimer’s Disease and Related Disorders Association.

“Why Don’t You Start One?”

In May 1999, Ms. Comstock and other members of her support group joined forces to hold the first-ever national conference devoted entirely to FTD. Drawing upon her years of experience and contacts, Ms. Comstock helped attract several hundred people to the event in 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.

After Ms. Comstock retired from the Alzheimer’s Association, she remained frustrated that so little attention was being paid to funding FTD research and support on the federal level. She expressed her feelings to a friend, the neurologist Dr. Jordan Grafman, who 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 2002, she established AFTD with a $1,000 donation. Initially called the FTD Society, the all-volunteer organization changed its name to the Association for Frontotemporal Dementias following its inaugural Board meeting in 2003; later it became the Association for Frontotemporal Degeneration.

Ms. Comstock served as AFTD’s Board chair for its first eight years of existence, and continued to serve as a Board member until her death.

“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. Helen-Ann, thank you.”

A Baffling Diagnosis

Ms. Comstock was born on April 16, 1933. She and Craig married in 1957. Ms. Comstock started noticing her husband’s FTD symptoms in the late 1970s, as the family prepared to take a vacation from California to Switzerland, where Craig, a mathematics professor, was due to spend a working sabbatical. Before leaving the U.S., Ms. Comstock wrote to the Swiss about her husband’s symptoms. They graciously told the family to come anyway, since the country has such excellent doctors. After administering five days’ worth of tests and interviews, a Swiss doctor gave Craig a diagnosis of Pick’s disease.

The family was baffled: Pick’s disease? Craig had previously been diagnosed with Alzheimer’s, and the family struggled to find information about that disease – Ms. Comstock recalled that her library had no relevant books on it, and the encyclopedia entry for Alzheimer’s was just two sentences long. “Frankly, before my husband got sick, I had never even heard of Alzheimer’s,” she said. “It just wasn’t a word that people knew or understood.” Now doctors said Craig had an even rarer neurological 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 said in the 2019 AFTD publication “A Vision for Hope: The Early History of the Association for Frontotemporal Degeneration.” Craig died at age 50. “There was nothing we could do to stop it,” Ms. Comstock said.

After organizing the 1999 conference on Pick’s disease, she worked tirelessly to establish the fledgling AFTD as the nation’s go-to FTD organization. She drafted AFTD’s first mission statement and bylaws, filed the necessary legal paperwork to establish AFTD’s nonprofit status, and drew upon her many years of networking to assemble the country’s leading FTD experts into a volunteer AFTD Medical Advisory Council.

A Track Record of Accomplishments

Ms. Comstock’s tenure as Board chair included many notable milestones. In April 2003, she put AFTD on the radar of an international community of FTD researchers when she was invited to speak at the International FTD Conference, held that year in Sweden. In July, her son, Earl Comstock, formerly the legislative director for Alaska Sen. Ted Stevens, was successful in getting the senator to include language requesting that the National Institutes of Health (NIH) investigate Pick’s disease in the conference report that accompanied the NIH funding appropriations law – a step that gave critical federal recognition to FTD research.

Under Ms. Comstock’s guidance, AFTD launched its HelpLine in 2005, offering a direct connection between AFTD staff and families facing FTD. AFTD also awarded its first research grant that year. Later, under Ms. Comstock’s Board leadership, AFTD established a highly fruitful, and still ongoing, partnership with the Alzheimer’s Drug Discovery Foundation, and in 2008 held its first public meeting, the precursor to AFTD’s biggest annual event, the AFTD Education Conference.

While she stepped down from her position as Board chair in 2010, Ms. Comstock continued to serve as a Board member and was a frequent and welcome presence at AFTD events.
In 2022, Ms. Comstock told AFTD, “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 said, “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.”

In lieu of flowers, the family requests that donations in Ms. Comstock’s honor be made to AFTD.

My husband and I are very sad to hear of Ms. Comstock’s passing!  We are deeply grateful for the support, grants, and encouragement from AFTD, during my husband’s courageous struggle with AFTD and ALS! As we read about her husband’s disease and her courage to care for him as well as her kindness and life pursuit to help others through founding AFTD, we had tears in our eyes! She will never be forgotten, and we would like to express our profound gratitude and condolences to her family.  As my husband’s sole caregiver through his long and horrific disease(s), it has been extremely challenging and devastating in so many ways: physically, emotionally, spiritually, financially, and isolating/lonely! Because of Ms. Comstock’s vision and generosity to invest the rest of her life (after her husband’s battle with FTD) to help others, we have been able to cope better with the great AFTD newsletters, helpful staff, much needed grants, and connection with community who are suffering as we are! In our daily struggles with constantly changing symptoms and struggle to survive, we are NOT alone!  She is in our prayers, as well as her family who must be so proud of such an extraordinary woman who has touched the lives of so many, like us! The hoped for cure for this cluster of horrible diseases may come to late for my husband, however because of the research and awareness Ms. Comstock has fought so hard for (on behalf of all of us), there may be one in the near future. Thank you, again, and our prayers are with her family and loved ones at this time of loss! Joanna and Dr. Behzad (Bob) Razban (FTD & ALS) —

Thank you. A true path blazer. —

We are sort of new to the FTD world but I can tell you that AFTD has already been a place I, as a caregiver, have felt like I had a place I can reach out to when needing a virtual hug and encouragement that I am not alone and I am not crazy. It has helped me be a better caregiver to my wonderful husband, God bless him. Thank you, Ms Comstock,  for following the God given vision to help others in this weird prison we live in. You have made a difference.—

I am so very grateful to Ms Comstock for all her efforts to found this excellent organization. My husband has been diagnosed with non fluent PPA which is part of FTD and we both have benefitted from the information, webinars, and support from this group. May her memory be a blessing. —

Without Ms. Comstock and her devotion to fighting this disease, my life with FTD would be not nearly as livable as it is. My daughter often reminds me of a conversation I had with her at the first conference I attended, not knowing who she was and she not knowing me. SHE LISTENED! She assured me they would take MY ideas under consideration. I had FTD so I MATTERED. I owe her so much. —

Sending thoughts and prayers to Helen-Ann’s family. What a wonderful woman who has helped so many, including me, as I navigate my husband’s diagnosis of bvFTD. So much gratitude for her work! —

I have several fond memories of Helen-Ann. I met her in June 2007 at an FTD conference in Philadelphia.  I discussed with her my wife’s illness and the situation with my teen children. She empathized and recalled having a similar situation when her husband was diagnosed and under care. Soon after that, she was instrumental in getting AFTD to offer a phone support group for caregivers with children at home. That support group was integral to keeping me sane. When I was on the AFTD board, Helen-Ann was a consistent advocate and cheerleader for the AFTD support initiatives. While she cared about all of AFTD’s missions, it seemed to me that support was her passion. Helen was not only passionate and compassionate, she was a joy to be around.  I am ever grateful for her drive to serve the FTD community into her 90’s. Without her, the FTD world would be in a very different place now. Rest in peace Helen-Ann. —

As a person living with bvFTD, I greatly appreciate the pioneering efforts of Mrs. Comstock to create this amazing organization and to make my diagnosis journey “typical”-not worse! I am also grateful for her benevolence in providing me grant funding to support a post-diagnosis hobby which challenges my intellect and brings me joy.  Thank you for your boldness and resolve to help make our lives better. Rest in His Peace. —

I never had the honor of meeting Ms. Comstock, but the organization she created made a profound difference in my life. When my own father was living with FTD, AFTD became a lifeline. The resources she helped build gave me the tools to better understand the disease and connect with others walking a similar path. In moments of confusion, AFTD brought clarity; in times of deep uncertainty, it offered comfort. Ms. Comstock’s legacy is one of compassion, strength, and hope. Because of her, none of us have to face FTD alone and that is a remarkable gift. I carry deep gratitude for all she made possible. —

Helen-Ann Comstock forged a path that enabled others who care for someone with FTD to walk with knowledge and hope in their hearts, and by her efforts she shone light on this most taxing of neurological disorders.  As Facilitators in the ‘Devon and Cornwall FTD Carers Support Group’ in England, we send sincere condolences on behalf of all our group members, to her family, friends and colleagues. With gratitude, Christine Bennetts, Mike Wilmot, Lynn and Phil Slater —

Thank you, Mrs. Comstock, for creating a foundation (a lifeline, really) that gives caregivers HOPE and support. To know there is a caring team, resources and educational platform out there to help with this journey is paramount. May you rest in peace knowing you’ve left being such a gift. —

I am sending my deepest condolences to Helen’s family and all her colleagues at AFTD who were inspired by her leadership.  I met Helen when AFTD first became the voice for individuals affected by FTLD and their families.  At Northwestern we have been committed to research in this area since our inception in 1994.  Recently, we were endowed with the Northwestern Kathryn Aring Piper Center for Frontotemporal Cognitive Disorders in recognition of the importance of work on frontotemporal diseases that  have been under appreciated and underserved. We are truly grateful to Helen for her pioneering work to bring recognition, funding and, most of all, scientific progress, to this group of diseases that, as she herself experienced,  resulted in misdiagnoses, delays in treatment, and blind alleys to care. Sandra Weintraub, PhD, ABCN/ABPP Professor Psychiatry and Behavioral Sciences, Mesulam Institute for Cognitive Neurology and Alzheimer’s Disease Northwestern Feinberg School of Medicine, Chicago, IL —

To the Family of Ms. Comstock, I am forever grateful for the initiative and leadership she took in the fight against FTD! It must have been an overwhelming endeavor for her and those around her, but look how far AFTD has come?! Her efforts have and continue to improve the lives of those suffering from FTD and caregivers and loved ones. I will forever be grateful to her efforts! My deepest condolences to her family and friends! —

Thank you for laying the foundation that FTD is built upon. I now am not alone and have reached out to the FTD organization for resources and other support. God bless you, Mrs. Comstock. —

Sincere condolences to the entire Comstock family and the AFTD family on the passing of Helen-Ann Comstock. May her memory inspire others to action and be a blessing to all. —

My heart is sad to hear about the passing of Ms. Comstock. I am so grateful for her and her family for starting AFTD.  It was such a lifeline to me when my husband was diagnosed with PPA-FTD.  Blessings and sweet memories to the family as they grieve the passing of a great lady. —

Please accept my deepest condolences. Because the AFTD connecting me with fellow FTDer, I’m still alive. I also humbly received a Comstock grant one year for some noise cancelling headphones that help me tremendously to this day. Please be gentle with yourselves during this time of grief. I’m profoundly grateful to you all. —

Where would Carers be today without AFTD, thank you Ms. Comstock.  I’m in Australia and have found AFTD’s information and presentations invaluable. Karyn —

I must be one of 1000s of current and former caregiving spouses who is grateful for AFTD. My late husband died of FTD 10 years ago. Without AFTD, I would have been lost and floundering. I send thoughts of thanks to Helen every day. Her memory will be a lasting blessing INDEED.    Best, Elaine Rose —

Condolences to Helen-Ann’s family.  When my sister was diagnosed with FTD a few years ago, I immediately went to the internet to learn about FTD.  I only found about a paragraph and a half of information.  I learned about AFTD and found a treasure trove of information.  Thank you, Helen-Ann, for founding AFTD for so many other people.  As you knew, sadly from your own experience, it was extremely necessary and helpful. —

With deepest sympathy in the passing of Ms. Comstock.  Her work is invaluable and pray it continues. Sandra Hinrichs —

Helen Ann was a true force.  Focused and intent on making sure the FTD community was informed, properly identified and cared for.  Her mission was clear and I am honored to have been her first choice for board chair on this journey.  She will be forever in my heart. —

Ms. Comstock is the reason that many many people, including myself, have an outlet for our grief and a means of turning it into a tangibly improved quality of life for FTD families.  Even in the darkness of FTD, she has made our worlds so, so much brighter. —