The Dementia Action Alliance’s Advisory Board 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 Massachusetts
Michael R Belleville retired at the age of 54 after being diagnosed with Lewy Body dementia. Mike was a telecommunications technician for nearly 20 years and also served in the Rhode Island Air National Guard for 12 years. After realizing that he could still contribute in a meaningful way, Mike became an advocate for those living with dementia. He was a member of the Alzheimer’s Association national Early Stage Advisory Group in 2016.
Mike’s main advocacy focus now is working with the DAA to help others and to work to reduce the stigmas associated with dementia. Mike’s favorite quote is from Jackie Robinson “A life is not important except for the impact it has on other lives” and in Mike’s opinion no organization personifies that quote better the Dementia Action Alliance.
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 Nevada
Chuck McClatchey retired at the age of 61 after being diagnosed with early onset Alzheimer’s. He had served 21 years in the US Air Force as a C141 Flight Engineer and retired as a Master Sargent. Chuck then worked for the state of Arizona for 21 years retiring as Electrical Operations Superintendent. After deciding to become a fierce dementia advocate he started talking to groups about living life after this diagnosis. He was selected to the 2016 Alzheimer’s Association National Early Stage Advisory Group.
Chuck now lives in Las Vegas, Nevada with his care partner Bobbie, where he is still talking to groups and being involved in drug trials, while saving time for golf and travel.
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.
LONNI (MELANIE) SCHICKER
Lives in Missouri
Lonni is a native of St. Louis, Missouri. She is registered nurse, who through her career worked in the burn unit, quality management, managed care and most recently as professor of health administration. Diagnosed with cognitive impairment at the age of 58, and most recently with likely Lewy Body Dementia and Parkinsonism, Lonni set out to do the only thing that seemed logical to her, educate and advocate, particularly related to financial burden.
Lonni has served on the Alzheimer’s Association National Early Stage Advisory Group, the ASPE Stakeholder Group of Persons Living with Dementia, the Alzheimer’s Association of Greater Missouri board of directors, and is a national speaker and AIM advocate.
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.