The Dementia Action Alliance’s Advisory Council of persons living with dementia symptoms provides guidance from the perspective of their lived experience. Their insight and input is crucial to the Dementia Action Alliance’s mission, vision and goals.
Lives in Georgia
Robert Bowles is a retired pharmacist and past President of the Georgia Pharmacy Association. In 2012, at the age of 64, he was diagnosed with Dementia with Lewy bodies. He carries the APOE-3,4 genotype. Both of Robert’s parents had dementia—one with vascular dementia, one with Alzheimer’s.
Since his diagnosis, Robert has been actively involved as an advocate in the dementia community. He started a community support group in his hometown for persons with dementia and their care partners. He oversees the Lewy Body Dementia Forget Me Not Facebook group and has a website called LBD—Living Beyond Diagnosis. Robert strives to educate physicians, family members, and community leaders about cognitive impairment. He was the 2014 LBDA Volunteer of the Year.
Lives in Arizona
I was diagnosed 5 years ago at age 57 with Vascular Dementia. Since my diagnosis I have been active with Dementia Mentors as a mentor to newly diagnosed individuals.I am also on the panel for “Dementia Chats” and frequently cohost Alzheimer’s Speaks radio shows.
I have written a short booklet about vascular dementia which is available on Amazon to download free for Kindle Prime members and 99 cents for all other downloads. I was interviewed for a Nashville Public Television documentary titled Aging Matters: Living with Alzheimer’s and Dementia. My new mission in life is to educate and help individuals with dementia and their care partners understand and learn compensatory strategies for living well with dementia on both an individual level and group level.
Lives in California
Truthful Loving Kindness is an active blogger, has 4 adult children, 2 grandchildren, a Newfoundland dog and several pet chickens. She lives a healthy lifestyle and walks 10 miles per week.
Tru, as she is affectionately called, endeavors not only to retain her self-identity as long as possible, but also to provide encouragement to newly-diagnosed individuals with dementia and their loved ones. She is diagnosed with mild cognitive impairment with strong Lewy Body dementia symptoms.
Lives in Florida
Brian LeBlanc was diagnosed with young-onset Alzheimer’s in 2014 at the age 54. He carries the APOE-e4 genotype. His mother, father, and maternal grandfather have all died with symptoms of the disease.
As a member of the Alzheimer’s Association’s 2015 Early-Stage Advisory Group, Brian would like to raise awareness of the impact of younger-onset Alzheimer’s disease and be a positive example for other newly diagnosed individuals. His mantra is, “I have Alzheimer’s, but it doesn’t have me!” Brian is active on social media – his Twitter handle is the ALZ Guy.
Lives in Washington
Myriam was diagnosed with young-onset Alzheimer’s in 2009 and has been a fierce advocate ever since. She has the Puerto Rican mutation of the Presenilin 1 gene. Myriam’s father was one of 13 siblings, six of whom died with symptoms of AD, and two of her cousins are currently in the late stages of the disease.
Prior to her diagnosis, she served as a public defender in Washington State. Her legal background in county, state and federal public policy and her personal experience living with dementia has made her a deeply committed advocate for advancing dementia research, care and services.
Lives in Virginia
Mary L. Radnofsky, Ph.D. is a writer and former college professor with leukodystrophy. Her dementia was first misdiagnosed at age 47, two years after her mother’s. Mary is part of the Human Genome Project and has written about volunteering in clinical research. At age 56, she was identified with a Notch-3 gene mutation similar to the one that causes CADASIL, which probably also caused her mother’s dementia and death.
Mary was the first person with dementia to speak at the United Nations 2016 Human Rights Council in Geneva, and the UN Conference of States Parties in NY. She has also spoken about dementia in Hungary, New Zealand, Israel, and is authoring a book on human rights for living with dementia with Al Power, M.D. and Daniella Greenwood for Health Professional Press, to be published in 2018, around her 60th birthday.
Lives in Pennsylvania
Laurie was diagnosed with Early Onset Alzheimer’s & FTD in August of 2013 at the age of 55. Unable to continue a professional career she turned her focus towards helping others through their dementia journey. Laurie and her husband Roy, work continuously to identify triggers that cause confusion and make adjustments to overcome obstacles.
She is a Dementia Mentor and active in many support groups. On her website, dementiadaze.com, Laurie shares her feelings, challenges, symptoms and adjustments in hopes of encouraging other Persons with Dementia and care partners to explore ways to live beyond dementia.
Lives in Oklahoma
Susan Suchan was diagnosed at the age of 48 with early onset Alzheimer’s. Four years ago, an additional diagnosis of FTD/PPA was added. Susan is a mother of two daughters and five beautiful grandchildren! For the last three years she has used her voice to advocate for those who cannot; speaking to those diagnosed as well as care partners.
Susan participates in social online support groups, writes blogs and is making a movie showing the effects on relationships, financial impact and end of life discussions concerning dementia. Today, Susan is 59 and advocating for inclusiveness and collaboration for quality of life with dementia.
BRIAN VAN BUREN
Lives in North Carolina
Brian Van Buren lives in Charlotte, NC. He was diagnosed in 2015 with early onset Alzheimer’s at the age of 64 and became an advocate early on realizing the need to put a face on Alzheimer’s as an Afro American living with the disease. His mother and grandmother were diagnosed. Brian became a speaker on radio shows, conferences and as a member of the National Alzheimer’s Association early onset advisory group. He was re-diagnosed with Mild Cognitive Impairment this year.
Brian is a now a member of the Dementia Action Alliance Advisory Council bringing awareness to people of color and the LGBT community.