BY MARIA DENEAU
The color purple has become more than just my favorite color. It is the color of purpose and obsession for me that stirs raw emotion and almost a fight or flight mentality. Purple is the color most associated with Alzheimer’s Disease advocacy. Recently, I was asked why Alzheimer’s advocacy is so important to me. I had never thought about that before but it didn’t happen overnight. Now, I guess I can say it has become my “superhero” power in honor of my late mother as a result of the pain and fear of watching her fade away to a shell of who she was for 11 long years until her death in 2015 from the disease. It was devastating and changed my life because I felt powerless.
I not only advocate in honor of my Mom, but for my entire family. I advocate so that the stigma of this disease decreases. I advocate a I advocate because it is the right thing to do for me. As has been pointed out on more than one occasion, it is an obsession in my life. I am more than okay with that.
I am also not unique nor alone in my annual treks to Washington D.C. for the Alzheimer’s Association/AIM Alzheimer’s Impact Movement Forum every Spring where you will see thousands of purple sashes draped across advocates all over the city. Those advocates I like to call “warriors” speak to their members of Congress and tell their personal stories of how Alzheimer’s has affected them. I am one of those warriors. This year on Capitol Hill, we had over 1200 advocates speaking to Congress…and it’s working. In January of 2018, the bi-partisan BOLD Act (Building Our Largest Dementia Infrastructure for Alzheimer’s Act) was signed into LAW which essentially made Alzheimer’s a national public healthcare crisis. Since I have been advocating with my fellow warriors, we have gone from $562 million in 2014 to $2.6 billion in 2019 in NIH research funds towards Alzheimer’s.
The surprising thing about being a purple warrior? It’s fun and we get to hear about all of the latest and greatest advances in both research and public policy! Lots of us have bonded and become great friends through our advocacy work and our personal experiences. We also try to outdo each other in our purple attire, like my #ENDALZ purple Converse sneakers (a MUST for me on Capitol Hill now!). We also feel powerful in our quest when we see the rising statistics together on the big screen- Here is the link to the 2019 Facts and Figures for Alzheimer’s Disease: https://www.alz.org/alzheimers-dementia/facts-figures
Besides my public policy work and writing about Alzheimer’s, which has been cathartic for me, I recently became involved with The National Alzheimer’s Military Task Force. This is a new initiative that is being piloted through the National Association in the state of Ohio where I live near Wright Patterson Air Force Base. Its mission is to educate active duty soldiers, veterans and their families who are being affected by dementia at alarming rates with a possible connection to traumatic brain injuries & post traumatic stress disorder. The statistics show that it takes two years on average for active duty military and veterans to seek help, which is detrimental to their lives. Interestingly, the number of female veterans who are themselves battling the disease or are caregivers, sometimes simultaneously, is increasing. I think we need to do a better job of taking care of our veterans, and this is how I can help.
So I guess the answer to that very interesting question of “why do I advocate every day” is all around me. I live it and breathe it. It’s part of my fabric now. I will continue to advocate for an end to Alzheimer’s because it’s making a difference and it makes me a better person and a better Mom. I hope that my son sees the importance of giving back through my advocacy example in honor of his Grandmother. Do you see yourself joining the fight to end Alzheimer’s Disease? If so, please contact your local Alzheimer’s chapter online at www.alz.org. See you on The Hill and don’t forget to wear your purple sneakers!