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October 2021 by Caroline Przybylowski
The AFTD has been hugely helpful in navigating my family’s journey with Frontotemporal Degeneration, a rare, but unforgiving type of early-onset dementia. The AFTD website includes a plethora of useful information regarding everything from research that is being done to long-term care and advocacy support for families.
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October 2021 by Scott P Hockey
AFTD has had a direct impact on my family. My brother-in-law was diagnosed with FTD a few years ago. This association has provided support and education to my family in order for us to understand what he is going through. Thank you AFTD for spreading awareness and helping to educate others about this terrible disease.
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August 2021 by M Cunningham
Our family suffered through twelve years of difficulty and darkness, not knowing what was happening to my wife and the mother of our children. 60 Minutes alerted us to Behavioral Variant Frontotemporal Degeneration and pointed us to The Association for Frontotemporal Degeneration (“The AFTD”). With one phone call I was able to identify a medical center where I could take my wife for evaluation; and we came from the darkness into the light; from suffering in isolation, to finding collaboration and understanding for the long difficult journey that we had endured. We are better now; and working as a large extended family to care for her. This disease is horrible; we have The AFTD to thank for helping us find a pathway filled with love and support.
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August 2021 by christina kamarauskas
I absolutely could not have got through this cruel disease with my dad without AFTD. Not only are they a great resource, they are a group of people just trying to get through the same things you are. I thank everyone from AFTD especially Lauren Gauntheir for all her compassion and hardwork.Christy K. .
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August 2021 by Brianna Sullivan
AFTD was such an incredible resource for my family when my dad was diagnosed with FTD. Their website has really excellent, evidence-based, and easy-to-understand information about FTD and everything that goes along with it. AFTD also has a very helpful and responsive HelpLine service, lots of resources and supports for caregivers and other family members, and they foster a welcoming and understanding community for both patients with FTD and people with a loved one with FTD.
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August 2021 by Robin Davenport
The AFTD walked with our family as we traveled the FTD journey with our son through resources and connections with other families experiencing FTD. The AFTD Facebook group has been a lifeline to connect me with other mothers who have children with AFTD. This helped me to know I was not alone.
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August 2021 by Google user
AFTD was such an incredible resource for my family when my dad was diagnosed with FTD. Their website has really excellent, evidence-based, and easy-to-understand information about FTD and everything that goes along with it. AFTD also has a very helpful and responsive HelpLine service, lots of resources and supports for caregivers and other family members, and they foster a welcoming and understanding community for both patients with FTD and people with a loved one with FTD.
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July 2021 by Aisha Adkins
The AFTD has played a pivotal role in my journey in providing care for my mother, who was diagnosed with Frontotemporal Dementia in 2013. Through its Facebook support groups, I've developed friendships that I imagine will last for many years. I've also had the opportunity to exercise civic engagement through providing testimony and signing petitions, expressing the need for funding research for improved treatment and cures for this devastating disease. I am grateful for this educational resource and recommend people affected by FTD get connected to their helpful supports and services.
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June 2021 by Marian Grems
As the former caregiver for both my bvFTD husband and son, I’ve watched AFTD grow from a kitchen table operation to the multi faceted organization it is today.The FTD journey is lonely and unpredictable. AFTD is positioned to walk beside you; offering support, resources, educational opportunities, and more importantly hope! My daughter, a three time cancer survivor, is now facing a possible FTD diagnosis. Heartbreaking, yes! With the knowledge that AFTD is committed to supporting and funding research, I’m able to look more optimistically to the future - “we’ve got this!”
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June 2021 by Erica Largent
We have been so thankful for the support of AFTD throughout our journey with FTD. We have been grateful for the community and connection they fostered. The educational resources helped answer so many of our questions in the early stages after diagnosis. We also personally benefitted greatly from the financial resources and grants that are available for families facing this horrendous disease. Thank you AFTD for your tireless work.
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June 2021 by Melissa Fisher
Back in 2019, after over a decade of witnessing strange and deeply troubling behaviors by my dad, he was diagnosed with bvFTD. Having a diagnosis was only the beginning of this painful journey for our family. Medical professionals are rarely educated enough and treatments extremely limited, so it’s a “diagnose and adios” experience- just when you need so much help and support. Finding AFTD was like finding a lighthouse in a category 5 hurricane. We have found the most incredible help and support— and community of others who understand. Without the AFTD, I honestly don’t know where we would be. My mom in particular had relied on the counsel of the hotline MANY times, and the Comstock Grant gave her desperately needed respite. There is so much work to do to find a cure, but anyone who finds themselves needing help to get a diagnosis or information following one, the AFTD is THE place to start. I cannot say enough things about the people who work for them. They are genuine, passionate and beyond caring. Nobody wants to have to be associated with this disease, but if you must, the AFTD is here to help.
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June 2021 by Barbara Hala
AFTD is a wonderful organization for families with someone who has been diagnosed with FTD or is suspected of having FTD. They provide resources for all aspects of life with FTD from getting an accurate diagnosis to issues with advanced disease. They have an excellent web site with comprehensive resources, support groups, educational seminars, info about clinical trials, genetics, medications and where to access experts in your area. They also offer a phone help line. For anyone facing a diagnosis of FTD, AFTD is a true life line.
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June 2021 by Mike Kipp
We became aware of AFTD, the Association of Frontotemporal Degeneraion, in 2002, the year it was founded. I wife had just been diagnosed with Frontotemporal Degeneration. The family and I were searching for more information on FTD and how to deal with it. But little information was available. That is until we became aware of AFTD.During the following years, until my wife's death, more information has become available. This information and support helped us and others know how to deal with this terrible dementia. Today even more information and support is available. AFTD played an important role.I was a supporter of AFTD during my wife's battle with FTD, and I continue to be a supporter to this day. Please support AFTD.
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June 2021 by Steven Long
The AFTD has been a lifeline not only for me but so many I know that deal with any of the Frontotemporal Degenerative related diseases. I was so lost in the beginning of this journey trying to figure out what was happening to my wife. The association has always been available to assist but even more so my local support group. If you suspect your loved one may have FTD reach out and they can help.
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June 2021 by Tom Christian
The AFTD has been a great source of information and help for both caregivers as well as for those suffering from the various forms of FTD. They have been a voice for those impacted by this little known disease, bringing understanding and awareness to the media, health professionals, researchers, and the general public.But by far, one of the greatest works they have done is to become a hub for a worldwide network of people whose lives have been shattered by FTD. Because of the AFTD, individuals and families have found help and support through others who share common experiences, heartaches, and successes. Personally, I have found strength and encouragement from dozens of friends around the world who know firsthand what it's like to live with this unique form of dementia, both as caregivers as well as sufferers.FTD causes terrible isolation for all those it impacts. The AFTD has built a bridge providing resources and a fellowship of common experience that breaks down the walls of fear and isolation that FTD creates.
