Last week, the Alzheimer’s Impact Movement (AIM) Advocacy Forum, the nation’s premier Alzheimer’s disease advocacy event was held. The event offered volunteer advocates from across the country, including 50 from Georgia, to lend their voice, share their stories about why they’re fighting to #ENDALZ.
Several of our Georgia advocates, whose voices were heard while meeting with their district legislators, talked about why they are advocates and what the hope will be accomplished in Washington, D.C to help people living with Alzheimer’s and their caregivers.
TAMMY KAY BRUNSON – Ambassador to Representative Jody Hice (R-GA 10th District)
1. Why did you decide to advocate for Alzheimer’s and dementia? My daddy passed away in October 2018 from an 8-year struggle with Alzheimer’s. He fell out of the bed, broke his hip and never recovered. He died at home 2 weeks later when his brain could no longer tell his body to swallow or breathe. It was very peaceful.
I retired from teaching school in 2014 and was able to help my mother, his full time caregiver, on a daily basis. This time spent with my parents was a special blessing that I will always be grateful!
My parents and I participated in activities for Alzheimer’s patients and their caregivers provided by the Alzheimer’s Association district office in nearby Augusta, GA. That was such a blessing also! Through this, I was asked to consider advocating for the Alzheimer’s Association.
2. What has been the most rewarding part of being an advocate? Meeting all the other people with ties to this dreaded disease and how they have taken care of their loved ones.
3. What has been your overall experience with attending Forum in the past? First time to Forum? What are you looking forward to? Participating in Forum in DC is the best experience I’ve ever had. The hope and joy in the face of the adversity shared by the advocates is unfathomable! My daddy was always so proud that his baby girl was going to Washington, DC “to talk to the Big Man (the president) about Alzheimer’s!”
4. What is your desired outcome of this year’s Forum? My personal desire is for my particular fiscally, conservative congressman to support our asks!
DONNA CAMACHO – Ambassador for Representative Buddy Carter (GA 1st District )
1. Why did you decide to advocate for Alzheimer’s and dementia? My Mother was diagnosed in 1997 and lived with Alzheimer’s for the next 10 years. Although two of her three daughters were nurses, we knew almost nothing about this disease and reached out to the local Alzheimer’s chapter for information and support. I learned about the disease and learned that there was so much that was unknown – both in the physiology and etiology of the disease and in the care of the person living with the disease. I want to help move the scale in any way possible toward a treatment or a cure and I want families to have more resources than we had when my Mother was diagnosed.
2. What has been the most rewarding part of being an advocate? The reward is that we are making progress both in the knowledge of the disease and in resources available to families. The reward is when a family tells you they were helped by the information we provided and their journey was somewhat easier.
3. What has been your overall experience with attending Forum in the past? First time to Forum? What are you looking forward to? This may have been my 9th Forum – I’ve lost track. Forum is a renewal of spirit, a renewal and a rededication to our purpose to end Alzheimer’s. It’s one of those times (in non-virtual times) when you have to be there to fully understand the impact of more that 1300 people who all share the same passion and commitment – to End Alzheimer’s – in the same space!
4. What is your desired outcome of this year’s Forum? I hope that we will have the same impact through our Virtual Forum that we have in person on The Hill. I am excited for the new legislation and hope that all of us can convey the importance of all our “ASKS” to our Congress and get 100% support.
PATTI HEWITT – Advocate Volunteer for Representative Buddy Carter (GA 1st District)
1. Why did you decide to advocate for Alzheimer’s and dementia? I advocate because Alzheimer’s is a disease like no other. Caring for my husband, who died of younger onset Alzheimer’s, was a terrible lesson on how inadequate our healthcare infrastructure to meet the intense demands of this disease. I am his memory and wish to be a small part of the change we need to better support our families and communities.
2. What has been the most rewarding part of being an advocate? Meeting and working with other advocates and giving a voice to our loved ones.
3. What has been your overall experience with attending Forum in the past? First time to Forum? What are you looking forward to? This was my first time to Forum. I’m enjoyed sharing with our legislators how important their work is to improve the lives of their constituents dealing with Alzheimer’s and dementia.
4. What is your desired outcome of this year’s Forum? I want to ensure that our representatives have a better understanding of the impact their support of this legislation could have on families in their state.
ROB POLAK – Ambassador to Representative Andrew Clyde (GA 9th District)
1. Why did you decide to advocate for Alzheimer’s and dementia? For my family that has been ravaged by Alzheimer’s….the following have all passed due to this disease:
Grandfather John, Uncle John, Aunt Mary, Mother Rita, Sister Rita. I, and millions of other Americans live in fear of this disease. Therefore, I have chosen to do what I can to make a positive impact toward our vision…. A World without Alzheimer’s disease and other dementias!
I do this by advocating with the Alzheimer’s Association! This includes multiple activities – from being the Chairman of the Walk to End Alzheimer’s-Gainesville, to being a member of the Board of Directors, to working with our elected officials on budgets and legislation that make a positive impact in the lives of those impacted and their caregivers.
2. What has been the most rewarding part of being an advocate? It is helpful to know that others have been impacted by the disease and they also live in fear of the disease. Advocating creates a shared bond with these other victims and their caregivers. Getting to know these people, hearing their personal stories of struggle and small victories, and understanding how they have/are dealing with the disease is inspiring!
3. 2021 was my 5th forum. I enjoyed increasing my knowledge and understanding of the disease. I also enjoyed connecting/reconnecting with other advocates, and meeting with my elected officials to educate them on why we need their help and how they can support our cause!
4. What is your desired outcome of this year’s Forum? I am confident that we educated our elected officials on Alzheimer’s and other dementias and its devastating impact on our country. I am hopeful we will obtain their unwavering support for our priorities (legislative and budget asks) in 2021 and beyond.
TVONIA THOMAS – Ambassador to Representative Barry Loudermilk – (GA-11th District)
1. Why did you decide to advocate for Alzheimer’s and dementia? I chose advocacy to live my dream of one day experiencing a dementia free world. Though this dream has not materialized, being an advocate helps me put my passion in action so that I may help in every conceivable way. I am an advocate not only for the current generations that suffer, but for my generation as well. I cannot imagine being as cognitively sound as I am now, then to gradually lose the ability to recognize the people I love most. As a caregiver, advocate, and student of Gerontology, I realized that my passion was helping individuals and families dealing with this dilapidating disease is very much needed; to say the least.
2. What has been the most rewarding part of being an advocate? Being an advocate has tremendously blessed my life in several ways. Before volunteering with the Alzheimer’s Association last year I did not really know what, my exact purpose was in life. Through this process I have had the opportunity to network with other ALZ volunteers that share my same sentiments. The Alzheimer’s Association has a lot of valuable training and resources that I use for my clients and family members/acquaintances that may be having trouble with finding help. Overall, I am elated to be able to exercise my voice for such a dire public health threat.
3. What has been your overall experience with attending Forum in the past? First time to Forum? What are you looking forward to? I super excited as this was my first time attending the AIM Forum. Though virtual, I believe that our impact will be astronomical.
4. What is your desired outcome of this year’s Forum? This year, my hope is to see our legislators here in GA and all over the United States take a stand to assist our most fragile population with the necessary care, resources, and support to combat Alzheimer’s disease and other dementias.
ANGIE YOUNG – Advocate Volunteer to Representative Rick Allen (GA 12th District)
1. Why did you decide to advocate for Alzheimer’s and dementia? I decided to be an advocate for Alzheimer’s and dementia for my mom and grandma. My mom passed away on April 9, 2021 and was diagnosed with Frontal Lobe dementia two years ago. My grandma passed away a few years ago with Alzheimer’s.
2. What has been the most rewarding part of being an advocate? The most rewarding part of being an advocate is being a voice for those that don’t have a voice.
3. What has been your overall experience with attending Forum in the past? First time to Forum? What are you looking forward to? This was my first time attending the Forum.
4. What is your desired outcome of this year’s Forum? My desired outcome is results and change.
With help from our Georgia advocates like Donna, Tammy Kay, Patti, Rob, Tvonia and Angie, we’ve passed critical legislation and increased federal research funding seven-fold since 2011.
But our work isn’t done and we need dedicated advocates like you to build on this success in Congress and in every state capital. We’ll train you to advocate in a variety of ways, some of which take just an hour or two every few months. Whatever your experience and availability, we’re eager to have you on our advocacy team!
Will you join us? Take the next step here