Community Advocates

In order to stay up to date on latest treatments, drug discovery, clinical studies and how to cope with Alzheimer's disease every day, AlzheimersDisease.net brings you frequent articles, points of view and advice from leading patient advocates and experts.

Current advocates

Kris Bakowski

At the age of 46, Kris Bakowski was diagnosed with Early Onset Alzheimer’s Disease. Today, at age 65 she is still advocating for people with this dreadful disease. Read more.

Brandon Burke

A native of Baltimore, Maryland, and a graduate of Hampton University, Brandon Burke saw the effects of Alzheimer’s disease, specifically the havoc it wreaks on the diagnosed and the interruption of life it causes for caregivers, as an adolescent through the diagnosis of his grandmother. But he never dreamed how that would shape his adult life. Read more.

Lauren Dykovitz

Lauren’s mom, Jerie, was diagnosed with Alzheimer’s disease in July 2010 at age 62. Lauren was only 25 years old at the time. Jerie passed away in April 2020 from the end stages of Alzheimer’s disease. Read more.

Ivy Farina

At every point in my life I have loved family members suffering from Alzheimer’s disease. Firstly, with my great grandmother when I was a child, then with my great aunt as a teenager, and now most recently with my grandmother and other great aunt as a young adult. I’ve watched my grandmother care for her mother and both her sisters, and my mom (also a contributor on this site) take care of my other grandmother. Read more.

Pam Farina

Pam was a busy, working, single, Mother of 3 in 2012 when her Mother, Jewel, first began to display the symptoms of what would eventually be diagnosed as Alzheimer’s. Jewel was 76; a devoted and loving Mother and Grandmother who was the glue that held her family together with grace. Read more.

Amy Grantham

Amy Grantham’s first dealing with dementia and Alzheimer’s disease came as she watched the mental and physical decline of her grandmother. Like most kids, she thought her grandparents were immortal and indestructible. They seemed that way for a long time. However, the strong, articulate, and capable woman who she often watched whipping up banana pudding and southern-style vegetables in the kitchen slowly seemed to disappear. Read more.

Shannon Grantham

Shannon’s first encounter with Alzheimer’s Disease began as a young teenager. Her grandmother, who in her eyes was always the strong, extremely intelligent, and could come across as brass and harsh with her words received the diagnosis during her childhood. Grandmommy was one of those who never took slack from anyone. Read more.

Molli Grossman

Molli Grossman holds a PhD in Gerontology from University of Southern California (USC), where she currently researches the psychology of aging as a postdoctoral fellow. Her two primary areas of research are caregiving and factors contributing to healthy aging. Read more.

The Long Point Girl

I have been happily married to my husband, Steve, for more than a quarter century! We have two amazing adult children: a daughter, who is a high school teacher and a son, who is finishing up his Masters Degree in University. Where does the time go? Read more.

Kerri MacKay

Kerri MacKay first engaged with people living with Alzheimer disease and dementia when she volunteered as a nursing home recreation assistant in high school. In 2019, over a decade later, her family noticed signs her grandmother was experiencing, that were later confirmed as dementia. Read more.

Kristin Martin

Kristin brings a different aspect to the Alzheimer’s community. When it comes to this community, there are often times those left behind, the “forgotten generation.” As caregivers are busy taking care of the family member with Alzheimer’s, there are those family members that get pushed off to the side and they have to learn to deal and cope with this all on their own. Read more.

Kathy Matheny

Kathy Matheny is world traveler, but a Southern Girl at heart. Her dad was career Army and took the family on assignment in Germany for five years. Her parents were both farm kids, so they traveled as much as they could while overseas and took their kids with them. Read more.

Amy Matthews

Amy has worked exclusively in the field of Alzheimer’s and related dementia disorders for the past 30 years. Her experience ranges from Adult Day Care and Home Health to working as the original Activity Director in the very first dementia-specific assisted living in the country and later as Executive Director opening a building in West Orange NJ. Read more.

Kim Peretz-Mok

A decade ago when Kim became the primary caregiver for her father, she never envisioned that her journey would lead her to a role as a contributor for Health Union. Read more.

Nikki Nurse

Nikki is a jewelry designer, blogger, content creator and full time caregiver for her mom who was diagnosed with early onset Alzheimer's 9 years ago. At the age of 27 she quit her corporate job to become a caregiver for her mom and began a period of self discovery. Read more.

TK Sellman

TK Sellman, RPSGT CCSH is a career journalist (Columbia Chicago, ’90). She was diagnosed with idiopathic hypersomnia in 2010, which inspired her to go back to school to become a sleep technologist in 2012 and a professional sleep educator in 2014. Read more.

Shannon Simcox

Shannon is the marketing chair for the Philadelphia Walk to End Alzheimer's. In addition to promoting the event, she raises funds and awareness for the disease throughout the year. Shannon lost her grandfather after his 10-year battle with Alzheimer's disease in 2015. Read more.

Lynn Marie Witt

My experience with Alzheimer’s disease is two-fold. Both my mom and dad were given a diagnosis of Alzheimer’s disease. I also have medical training and experience as an Occupational Therapist. I had the privilege to work directly with individuals with diagnoses of Alzheimer’s disease, dementia, and various cognitive disturbances. Read more.

Former advocates

Jim and Marilyn Klunder

We take care of Jim’s mother Joan who turns 85 in October. The three of us were born and raised in southern California. Joan’s mother (Jim’s grandmother) passed away about 20 years ago from Alzheimer’s and as Joan predicted, she has been battling it for about 5 years. Read more.

Tim Louwers

Renata and Tim Louwers co-founded Months To Years in 2017 after the losses of their first spouses (Ahmad and Barbara, respectively) in 2014. Read more.

Ted Rall

Ted Rall is a nationally syndicated political cartoonist, graphic novelist and writer. A Pulitzer Prize finalist and twice the winner of the RFK Journalism Award, Rall turned his attention to his mother's struggle with Alzheimer's earlier this year. Read more.

Alice B. Scarr

Alice B. Scarr is a medical social worker in the field of hospice care. Alice provides social services and bereavement counseling to her patients and their families. When Alice found the field of hospice, she knew that it was work for which she was perfectly suited. As she and many in the field would say, “We often get asked how we can do such difficult work, but the truth is, you know when you are meant for it.” Read more.

Trisha Volpicelli

As a healthcare professional, advocacy for clients and their families has always been a passion of mine. To me, advocacy involves the desire to help, and the desire to see clients and their families grow in being able to cope and get the best treatment for their medical issues. It also involves the process to persevere and keep finding the answers that suit clients as individuals. Read more.

Gail Weatherill

Gail Weatherill has been a Registered Nurse since the days of bell-bottomed jeans and beehive hairdos. Forty years in, she will tell you she’s just warming up. Read more.

Pat White

Pat is a former music educator with music degrees from Univ. of Tenn. at Chattanooga, Indiana Univ. and Univ. of Georgia. Arriving in Ohio in 1975, Pat and her husband raised their sons in Columbus where she has continued to live since her husband’s passing in 2016. Now the grandmother to four, she cherishes her time with family and with friends. Read more.

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