DAA Advisory Board

Monica was a Special Education Teacher for 19 years.  She lives in Louisville, KY with her husband, Dean, of 27 years.  They have two sons (29 and 17).  Monica enjoys cooking, listening to Audiobooks, and taking care of her houseplants.

After noticing she was having trouble with simple tasks such as calculating tips and multitasking, she was tested and diagnosed with MCI in 2016.  She was 46 years old at the time.  Her cognitive issues worsened and she was diagnosed in Frontotemporal Dementia in 2020.  That diagnosis has since been changed.  Her neurologist now thinks that her Lupus could be the cause of her Dementia.

Gary Howard retired as a paramedic from the Los Angeles County Fire Department after 35 years. Firehouse personnel are responsible for cooking meals. This was when Gary discovered he really enjoyed cooking beginning a lifelong passion.

Gary was diagnosed with early onset dementia in 2018 at the age of 57.  He continues to cook for his family but with some modifications to support his cognitive changes. He writes everything down and creates checklists to ensure he has all the necessary ingredients for whatever he is making. He wife and their two teenage sons enjoy the benefits of his interest in cooking.

After being diagnosed with dementia and no longer able to work, Gary got involved volunteering with a number of dementia support organizations and helping others who are living with dementia. He finds this work enjoyable and personally rewarding.

Steve retired as an account executive from a medical insurance brokerage in 2015. He lives in Brooklyn, NY with his wife, Cookie. They have been together over 50 years, having met in junior high school. They have two grown sons and five grandchildren.

In 2018, Steve had open heart surgery. During recovering from the surgery, he felt his brain was “clogged”. The doctor said this was very common when one has open heart surgery and that it could take six months to a year to “unclog”. His brain didn’t “unclog”, so he saw a neurologist. After much testing, the neurologist advised that Steve has Alzheimer’s. Subsequently, a different neurologist reviewed all his tests and diagnosed young-onset MCI rather than Alzheimer’s.

Prior to his heart surgery, Steve liked to paint modern art on canvas. Currently, he enjoys playing mind games on his iPad. He came across DAA online and found the people there very welcoming, caring and understanding and wanted to get more involved. “They are the best medicine for me!”

Mark was 48 when he retired in 2016 after being diagnosed with young onset Alzheimer’s Disease. A tax accountant for over twenty years, his work focused primarily on trusts, estates, and non-profit entities.

In the early 1990s, he led a local chapter of the U.S. Jaycees, and was twice elected President. Today, Mark uses the skills he honed in the Jaycees to work with the Dementia Action Alliance and help eliminate the stigmas associated with a dementia related diagnosis. His own diagnosis has been changed to mixed dementia. He is an avid landscape and astrophotographer, postal history and stamp collector, genealogist, and gardener.

Jack is a native of northern Michigan and is on his second “tour” of Ohio, where, in 1989, he met his wife, and (now) care partner, Susan.  For 37 years, Jack held a variety of management positions in various manufacturing industries, and was fortunate to have traveled several times to ten different countries during his career. He went on disability in 2017 after receiving an Alzheimer’s diagnosis.

Jack started having symptoms of cognitive issues in 2004 when he was 48 years old. But it wasn’t until 2016, when Susan, a Special Education teacher, noticed a significant problem with Jack’s thought processes and behaviors. This began a journey taking four years, eight different diagnoses and many long road trips to many specialists to finally hear the words-behavioral variant Frontal Temporal Degeneration (bvFTD).

In 2021, Jack’s diagnosis was “confirmed” when he was genetically tested and found to be carrying a rare hereditary gene mutation that causes FTD, in addition to Amyotrophic Lateral Sclerosis (ALS).  Today, Jack is an ambitious participant in FTD research, contributing to finding a cure and prevention for future generations.  He is applying his leadership skills through DAA to help others live well with dementia.

Deborah grew up on a farm in Sacketts Harbor, NY. She was a career nurse working at Blue Cross and Shield in Syracuse NY for 20 years. Deborah moved to Washington DC and worked in the health insurance industry for many years before returning to her love of geriatric nursing. She was an in-home private duty nurse until needing to stop due to her symptoms of dementia.

Deborah was diagnosed with Lewy body dementia in 2017. She said her life changed completely that day. She lost her driver’s and nursing license. For someone who thrived on helping others throughout her life, this was a shattering blow. As her Lewy body symptoms increased, she moved back to New York state to live near family.

Deborah lives alone with her cat, Adah. She loves to read, do jigsaw puzzles, adult coloring, work in her garden and make ‘junk journals’. She feels she found life after diagnosis through DAA. ” I have found my ‘purpose’ through DAA. “

Stephen retired from a career in banking in 2017 due to symptoms of dementia.  He began noticing cognitive changes in his mid-fifties and was diagnosed as having Mild Cognitive Impairment.  At age 59 Stephen was diagnosed with vascular dementia and early-onset Alzheimer’s Disease.

Stephen has had an interesting life including radio announcing and production, working as a researcher, and world travels including studying abroad. He’s happily married and has a daughter with his wife and care partner, Susan.  They both love traveling and flower gardening together and are also cat lovers with three furry feline family members.

Since learning he is living with dementia, Stephen has been an active and vocal advocate for better understanding dementia and awareness of its many forms.  He has spoken at numerous events and served on committees for DAA, his local Dementia Support and Action Groups – Community Dementia Alliance of Bloomington, as well as Dementia Friendly Indiana.

He is a living example of the friendships, growth, activities and engagement DAA develops and spreads through its many programs!