Volunteers are the cornerstone of LBDA. LBDA volunteers help raise awareness, provide support when it is most needed, raise funds to help LBDA grow, and connect people in our community to vital resources. Each year, we honor individuals for their commitment to outstanding volunteerism and making a difference in the lives of people affected by Lewy body dementia. The LBDA Volunteer of the Year Award recognizes outstanding volunteers for their commitment to LBD advocacy, awareness, education, research, and support.
Past Award Recipients
The Lewy Body Dementia Association 2021 Volunteer of the Year is Barbara Levine.
In 2015, Barbara Levine’s husband, Robert, was diagnosed with Lewy body dementia. Despite this life-changing diagnosis, Barbara notes that their day-to-day life had not changed drastically. Even after Robert was forced to stop driving in 2016, he was able to overcome this setback and maintain a level of independence using Uber, leaving Barbara feeling comforted by his resilience in the face of this disease and Robert’s changing capabilities.
Things were okay for a while, but in 2017 she and her family realized they needed more support, “We were struggling with assimilating that he had this disease, so I needed other people to talk to.” Barbara notes, “Friends and family are great, but they do not know. I went to one generalized dementia support group that didn’t work out for me, so I wanted an LBD-specific support group and that is when I found the Lewy Body Dementia Association website.”
Barbara noticed that the nearest support group was about three hours away, and this just wasn’t feasible for her. Jumping into action, Barbara reached out to LBDA for help in starting a support group, connecting with another local who was interested in being a co-facilitator, and a few short months later their group was formed. “Encouraging people to start support groups. That’s the best thing I did – for myself and the others attending,” says Barbara.
This support was crucial as Robert slowly declined. Robert never lost the memory of who he used to be and his self-awareness surrounding his own personal loss was challenging for Barbara to observe. She compares the journey to, “picking off a band-aid as slowly as possible,” and she felt that she had lost her husband long before his passing.
Having known and experienced life with Lewy body dementia for so long Barbara finds herself shocked by how many people are still unaware of the disease. She makes a point to hand out LBDA informational packets whenever possible, with hopes of increasing awareness and knowledge of the disease amongst healthcare providers and families alike. Barbara notes that, despite the difficulty of her family’s experience, if any good can come from it, there is purpose.
A year after Robert Levine’s diagnosis, Barbara decided she wanted to expand her efforts and began organizing a fundraising event for LBDA in 2016. Barbara recalls, “When I first started, all of the fundraisers were about doing a walk or doing a run, and that didn’t spark for me.” So, she found something that incorporated her passion for fashion and need to help fundraise. For the past five years Barbara has hosted a fundraiser presented by EVEREVE, a clothing store in the suburbs of Chicago, Illinois, for the Robert H. Levine Foundation. This foundation, created by the Levine family, aims to raise awareness for this disease and resources for support services, educational, and research efforts.
Despite the fundraiser’s success, Barbara shares, “I always wanted to do something bigger.” And she has! This year, Barbara’s fundraiser has grown into an exclusive fashion show and luncheon event with proceeds from the store’s sales being donated to the Lewy Body Dementia Association.
LBDA is grateful for Barbara’s volunteerism, and continued work in helping others who are affected by Lewy body dementia.
Lisa Kelly is raising awareness of Lewy body dementia in honor of her dad. Lisa’s father has been battling with LBD for over seven years. Over the past two years, she has dedicated her time to supporting families of those with Lewy body dementia with her annual event, The Lisa Kelly Ironman Challenge, and her Facebook birthday fundraisers. She has raised over $20,000 for LBDA and continuously supports LBDA for two and a half years. Lisa’s passion and commitment for helping others in their journey with LBD are selfless.
Kathy Teyler Jarrett was care partner for her husband, who passed away with Lewy body dementia. She is currently the facilitator of a LBD support group in Portland, Oregon. Kathy support sthe efforts of the Oregon Health & Science University, an LBDA Research Center of Excellence, attending quarterly meetings of the neurology team. Kathy is also a “Lewy Buddy” and is always willing to help other Lewy Buddies who need information about her area.
Barbara Leipow has a nursing background and her personal experience with LBD provide empathic support to individuals affected by LBD. Barbara is a “Lewy Buddy” as well as an LBDA Support Group Facilitator. Barbara works with her county to educate first responders and emergency personnel understand dementia. Barbara is also a member of the Georgia Alzheimer’s and Related Dementia Collaborative as an LBD advocate.
Nancy Martin and Pat Snyder exhibit dedication and passion for supporting those with LBD and their caregivers. Their accomplishments include launching support groups in their area, authoring books and publications on the disease, and reaching hundreds of individuals in an effort to raise awareness and help others facing this disease.
Paula Biever launched an LBD support group in her community, volunteered as a Lewy Buddy, and dedicates herself to raising awareness of this terrible disease.
Thomas Clark is a support group facilitator and Lewy Buddy (Lewy Buddies provide support to caregivers. He facilitates two groups in the Austin, TX area, and presents materials on LBD at conferences and events as an advocate. Without his determination and involvement, the Texas support group network would not be as extensive as it is today.
Rosemary Dawson is a loyal LBD advocate and Lewy Buddy. She serves as a member on LBDA’s Volunteer Program Services Committee, and takes personal initiative to advocate for awareness of LBD. In addition, she moderates the LBD Caring Spouses Yahoo group, and connects caregivers to the resources they need.
Katherine Fowler is a long-time support group facilitator and caregiver to her husband who lives with LBD. She guides a strong group of individuals who either have loved ones that currently live with LBD, or have experienced a loss of a loved one due to complications from LBD. She is also an active participant in awareness campaigns.
Paul Smith is a support group facilitator and Lewy Buddy. Paul facilitates an active support group in Illinois. He proved instrumental in expanding communications between LBDA, Lewy Buddies, and constituents while providing feedback on LBDA programs. He is a community activist and often lends his voice to interviews and articles on LBD.
Kathleen Anduze is a former registered nurse and nursing director, horseback rider and painter. Kathleen was diagnosed with LBD at the age of 51. Despite the fact that Kathleen suffers from Lewy body dementia, she has been a tireless supporter, contributing a painting for LBDA’s holiday cards, and organizing and participating in fundraisers including a Lick-it for Lewy Ice Cream Social.
Robert Bowles, a family man, retired pharmacist, and a man of faith, is guided by his passion for dementia advocacy and his desire to help others along their journey with the disease. He speaks about LBD to community groups, physicians and pharmacists. Robert has organized fundraisers and he mentors others who have dementia – both in person and online.
Joy Walker is a writer, hospice worker and bereavement counselor and worked as a professional care-manager for her father. In 2011, she published a memoir both about being her father’s live-in caregiver and about her experiences cleaning out the family home, filled with 40 years of living, memories, and hoarded material.
Jason M. Rubin is a successful writer and novelist, wrote a touching blog post about his mother’s illness on the tenth anniversary of her death from Lewy body dementia, which caught the attention of staff at the Lewy Body Dementia Association. Jason was soon invited to share his LBD story on LBDA’s website, and he began to volunteer with the organization.
Norma Loeb, for whom service to others is more than just a volunteer activity — it’s a way of life. Norma was selected as the recipient of the 2011 LBDA Volunteer of the Year Award. She is one of seven nominees recognized for her outstanding commitment to serving LBD families throughout the year.
Irene Selak serves as a moderator on LBDA’s discussion forums. In addition to her work welcoming new members of the online LBD community, she serves as a primary contact for telephonic and electronic support on LBDA’s Caregiver Helpline. She first came to LBDA through an LBD support group while serving as a caregiver for husband, Jim.
Ronnie Genser worked tireless to help so many families throughout the United States and Canada. She volunteers as the LBDA’s Support Group Coordinator for LBDA’s national support group network. Through her leadership and expertise, the network has grown from just six support groups to 68 support groups which are now in 26 states as well as the Canadian province of Ontario.
Victoria Ruff she cared for her mother who passed away from LBD. She joined LBDA in 2006 and currently sits on the Outreach Committee. She has made the LBDA Chat Room a valuable resource for caregivers and others affected by LBD to meet online in real-time. Victoria leads an LBD support group and has helped to bring information and resources on Lewy body dementias to local facilities.
Helen Whitworth joined LBDA in 2005 when she began exhibiting at medical conferences. In 2006, she took over writing volunteer job descriptions, supervising new volunteer applications, and developed a new volunteer orientation process. Under her supervision our volunteer ranks have nearly doubled and we are now more effectively engaging volunteers in our mission across the country.
Carol Caughran started the first LBD monthly support group in the US, and in January 2006 held a LBD caregiver’s symposium in Coral Springs, FL. The symposium included two professional speakers and a caregiver panel. Carol arranged for the event to be filmed and it is now an excellent resource for professional and home caregivers.
Gourete Broderick was selected as the first LBDA volunteer of the year for her dedication to raising awareness of LBD throughout Canada, the US and beyond. Gourete (a.k.a. “Courage”) conducted an international e-mail campaign to professionals and mailed LBD brochures to hundreds of organizations throughout Canada.