My Nonprofit Reviews

In early 2008, my sister Lee, a vibrant, healthy mother of two adolescents and talented elementary school teacher was showing early symptoms of aphasia, struggling to get the words out of her mouth that were in her head. Of course, at that time, we had never heard of a condition called aphasia. We just knew something was not right with Lee. In July, when Lee was complaining of headaches and the speech pattern was getting worse, we made a trip to the emergency room. The CAT scan ruled out a stroke, but the doctor said, "It does appear that there is some atrophying of the frontotemporal lobe - you should get that checked out." What?!! What do you mean atrophying? What does that even mean?
Many months, and many trips to Columbia-Presbyterian's Neurological Institute, later, we had a diagnosis of Primary Progressive Aphasia and Frontotemporal Disease. But again, What?! What does that mean for Lee, and her husband, and kids? Is there a treatment, a cure, some help? Where do we turn? So many questions!!
It took us a couple years to find this organization called Association for Frontotemporal Degeneration (AFTD), and begin to get answers to our questions. The website at that time was useful, but the real help came when we attended one of the Educational seminars sponsored by AFTD. We learned so much about the underlying causes, research, efforts to identify and just start naming the condition that had been called "early onset Alzheimer's" for so many years. We learned about research efforts and clinical trials, support groups for Lee, her husband and her kids. AFTD suggested we host a workshop for friends in which we could explain what was happening to Lee, and educate the public about this disease. Being able to name, describe and explain was a way to try to gain control over something that seemed so utterly uncontrollable.
Over the next 3-4 years, spouses of work colleagues received a similar diagnosis, and experienced the same earth-shaking disquiet, and began asking all the same questions. We could not give them much good news, but we could actually refer them to an organization that could give them pertinent, reliable and current information. Beyond the information that was available on the website and the educational seminars, AFTD is sponsoring research to "fight this disease (ftd)," AND they connect caregivers with critical support.
Our beloved Lee slowly disappeared from us over 14 years, and passed in 2022, but AFTD was there through that entire journey providing whatever support they could. Some of it we used, some of it was not for us, but it was important for others. We have no doubt that AFTD uses every penny of our donations wisely and supportively for the families that are devastated by this disease. We are truly amazed at how much progress AFTD has been able to drive and support. In terms of an organization that is financing research, advocacy and patient and family support to combat a disease that is ravaging far too many families, I cannot imagine how AFTD could do a better job.
Please support this organization!