Welcome!

Welcome to my under-construction spot on the web. Currently this is basically a collection of links to articles I've written since my diagnosis with younger-onset Alzheimer's disease in 2016 at age 54. Ultimately I hope this website will be a collection of my memories, an easy place for me to go to see what I will ultimately forget.

The following is a bio prepared by the national Alzheimer's Association when I served on the association's National Early Stage Advisory group in 2017.

Phil Gutis was diagnosed with younger-onset Alzheimer’s disease in 2016 at age 54.

After graduating from Penn State University, Phil joined the New York Times as a copy boy and worked his way up the ranks to become a reporter in the mid-1980s. He left the newspaper in 1990 and began a career managing communications for non-profits, including serving in communications roles at the American Civil Liberties Union and the Natural Resources Defense Council.

Prior to his diagnosis, Phil had been worried about memory lapses for some time. He recalls being embarrassed at his inability to remember working with a good friend at his college newspaper. He would get lost driving a familiar route. Worse, he was struggling to maintain his business. “It was becoming harder and harder to handle multiple assignments,” he says. “I blamed myself and thought maybe I just lacked the discipline to get the job done.”

Phil’s sister found an online advertisement looking for people concerned with memory loss for a drug trial. He called the number, passed the initial screenings, and was brought in for additional testing including a cognitive assessment. Phil scored a 71 – well below the 85 or less needed to be admitted to the trial. The director of research for the trial let him know that there was likely something seriously wrong and he could be facing a diagnosis of early onset dementia or Alzheimer’s. Following an MRI and a PET scan, it was confirmed that Phil had younger-onset Alzheimer’s.

Phil immediately shared the news with friends and family through candid Facebook posts, with the goal of chronicling the disease and encouraging others who may be experiencing early symptoms like he was to seek diagnosis and to enroll in clinical trials. “I truly hope that I will be able to help others struggling with this disease by going public with my diagnosis and story,” Phil says.

Phil joined the Alzheimer’s Association 2017-2018 National Early-Stage Advisory Group and has continued his advocacy with a special focus on educating others about the benefits of drug trial participation. He was enrolled in Biogen’s phase three trials for Aducanumab, which was cancelled in February 2019. “Participating in trials gives you access to clinical resources that you might not have otherwise,” he says. “The rigor of the process was incredible and the costs are covered. You can really help yourself while advancing the research needed to beat the disease.”

While staying active helps alleviate some of the stress that accompanies an Alzheimer’s diagnosis, Phil says the disease is never too far from his thoughts.

"There are many days when my diagnosis seems like just a really bad nightmare,” he says. “But unfortunately the nightmare is real and even though I feel great today, I know there is a very bad disease gnawing away at my brain."

Phil has written about his experience being diagnosed with younger-onset Alzheimer’s for the New York Times and has done extensive outreach with other outlets. He is currently on the Board of the Delaware Valley Chapter of the Alzheimer’s Association and has served as co-chair of the Longest Day for the Chapter.

Phil lives in New Hope, PA with his husband Tim and their pets – three dogs, two cats and a turtle.