Why Alzheimer’s Patients/Families Should Fundraise and Advocate

So proud to be an Alzheimer’s Elite Grand Champion once again (this is my 5th time). What does it mean to be an Alzheimer’s Champion? A Champion is someone It means that you walk in the Walk to End Alzheimer’s and raise over $1000 in donations. In my case I have achieve Elite Grand Champion status because I have raised over $3K this year.

This is important to me for many reasons. I initially got involved in the Walk to End Alzheimer’s when my Mom had Alzheimer’s. I walked on her behalf and raised funds to help find a cure. I now walk because a year and a half ago at 57 years old, I was diagnosed with Early Onset Alzheimer’s. Not only do I want to find a cure, I need to find a cure, and soon.

When I used to walk when my Mom was alive I would raise between $500-$750 annually. When I announced publicly on Facebook and to my friends and family that I also had Alzheimer’s and requested them to sponsor me for the walk I have raised between $5K-$10K each year. I guess I am an Alzheimer’s whore. I will do anything I can to help raise money to find a cure that will benefit me and so many others. People don’t actually care if you walk in the walk (if your not able to, but I love it because it’s a very emotional and enjoyable event). What people who donate care about is me, the person, and that I am sharing such a personal story about my life, and sharing how I am trying to overcome it and beat it. Just think how much we could raise if every abled minded Alzheimer’s patient would do this! Heck, we just might find a cure!

When I first found out I had Alzheimer’s I already knew the deck was stacked against me. Not only is there no cure for the disease, but I have a heart condition, and just had cancer. I do not qualify for any clinical trials or studies due to my medical conditions. My doctor confirmed that my situation is pretty grave. Rather than sitting around and feeling sorry for myself (which I rarely do), I decided to fight, and fight like hell. I decided to become an Alzheimer’s Advocate. I went to the Alzheimer’s Association and started attending their meetings. I did research and found out who are the influencers in the Alzheimer’s world and I became friends with them. I started facilitating Alzheimer’s meetings. I reached out to Alzheimer’s researchers online, Alzheimer’s advocates on Facebook and established relationships. I started doing interviews like the one I did with Lori LeBay on Alzheimer’s Speaks Radio, and also one with Chuck Gaidica/Alzheimer’s voices, and Betsy Wurtzel with Chatting with Betsy My favorite interview was with Being Patient regarding a very difficult topic “Wanting to die with dignity“.

So where has all this advocacy gotten me? I would venture to guess that I am much better informed about this disease than most people are with Alzheimer’s. I have also established a network of friends who also have the disease or have recently lost someone to Alzheimer’s. More importantly, I have established contacts within the Alzheimer’s medical community of doctors and researchers who now know who Kelly is and know what my medical concerns are and are actively trying to help me. I cannot participate in any medical trials due to my medical conditions, so I need all the help I can get. I am NOT going down without a fight. My neurologist says she has never seen anyone as proactive as me, and determined to beat this thing. If I can’t save myself, I can damn sure help save future generations.

Not today, Alzheimer’s, not today! Please consider donating to my Alzheimer’s Walk and help find a cure. Thanks!