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 Washington, D.C.
Diana began her advocacy volunteerism by serving as National Alzheimer’s Association Early-Stage Advisor (2018) and a member of Alzheimer’s Impact Movement (AIM) after being diagnosed with younger-onset Alzheimer’s disease in 2017 when she was just 56. Prior to her early retirement Diana worked as a systems engineer with the NASA Space Shuttle program, the Navy, and the Judiciary Software Development Security Programs.
She participates in and consults with the Smithsonian Institute and the US Botanical Garden Access Programs for persons living with dementia. Diana lives in Washington, D.C. with her two cats, and “thrives despite dementia” by advocating and traveling internationally.
Lives in Virginia
When Barb was diagnosed with young-onset Alzheimer’s at age 52, she did not receive information or support, nor was she prepared for the loss of friendships from the terrible stigma associated with dementia. She was determined to change mindsets to enable those of us living with dementia to “live a full life”.
As a member of the Alzheimer’s Association’s 2015 Early-Stage Advisory Group and now the Dementia Action Alliance, Barb is adding her passion and voice to educate physicians, government officials, the general public and family members to enable greater opportunities for other diagnosed individuals, wherever they live. Her goal is to do everything she can, while she can, to be a relevant agent of change!
Lives in Arizona
Paulan was diagnosed 5 years ago at age 57 with Vascular Dementia. Since her diagnosis she has been active with Dementia Mentors as a mentor to newly diagnosed individuals. She is also on the panel for “Dementia Chats” and frequently cohosts Alzheimer’s Speaks radio shows.
Paulan has 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. She was interviewed for a Nashville Public Television documentary titled Aging Matters: Living with Alzheimer’s and Dementia. Her 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.
CYNTHIA HULING HUMMEL
Lives in New York
Cynthia is living with early onset Alzheimer’s and was diagnosed when she was 57. She left her full-time ministry because of her cognitive difficulties, and now works with faith communities to help them explore ways to support those living with dementia and care partners. In 2017, Cynthia was appointed to serve a two-year term as a non-federal advisor on the federal National Alzheimer’s Advisory Council. She presented at two NIH research summits and is currently serving on the advisory panel for the National Academies of Sciences Alzheimer’s Decadal Study.
Cynthia is a lifelong learner and just completed her 37th class at Elmira College. She has been singing in a band for more than 15 years and was inducted into the NY State Country Music Hall of Honor in 2016. Cynthia loves swimming, travel and most of all, being a grandma to Cate and Henry.
Lives in Florida
Brian LeBlanc was diagnosed with young-onset Alzheimer’s in 2014 at age 54. He carries the APOE-e4 genotype. His mother, father, and maternal grandfather all had Alzheimer’s. As a member of the Alzheimer’s Association’s 2015 Early-Stage Advisory Group, Brian learned he had a passion for advocacy and began raising awareness of the impact of younger-onset Alzheimer’s disease. He speaks all over the country and is 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 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 Virginia
John-Richard Pagan is a disabled veteran and retired Marriage and Family Therapist. In 2012, he started a doctorate program in clinical psychology. Unfortunately, at age 47, while working on his doctorate, John-Richard began to suffer cognitive problems which impacted his studies.
Doctors have been unable to definitively diagnosis his condition and use the general term neurodegenerative disorder causing moderate to severe cognitive impairments in processing, language, and attention. He has not allowed this disorder to be what defines him. He continues to build on his education and is active in his spiritual and social community as well as enjoys a strong focus on family.
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 her confusion and they make adjustments to overcome obstacles.
Laurie 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 individuals and families living with dementia to explore ways to live beyond 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 condition. His mother and grandmother also had Alzheimer’s. Brian is a speaker on radio shows, conferences and was a 2017 member of the National Alzheimer’s Association early onset advisory group. Brian is a member of the Dementia Action Alliance Advisory Board and is bringing awareness to people of color and the LGBT community.