My 1st Alzheimer’s Advocacy Forum – It’s time to Lobby/Educate our Elected Officials

My Mom was diagnosed with Alzheimer’s four years ago. Two years ago, I moved home from Minnesota to be closer to my parents and help care for my Mom. (I actually moved in with them here at our family home in Michigan) About a year ago, I realized that I had to do more and become a bigger voice for the fight of my Mom’s life. Since she is not able to fight, I’m going to fight for her.

I started blogging and tweeting last year; I continue to do so today. I share my experiences, what I read and what I learn from others. I invest 2 hours a day into learning about this horrible disease, being an advocate, fundraising, sharing my story and sharing what I read/learn.

I may not be the most politically correct person, I speak from my heart and I speak with passion. I’m in this fight to win it! Failure is not an option! If I’m not able to do something in my Mom’s lifetime, I will keep fighting for a cure for my Sisters and Nieces.

I have been to DC many times in my lifetime. This was the most meaningful trip that I have every been on (it was something that had so much meaning and importance to me). The only other trip that had significant meaning to me was when I was in DC last year for my friends father (Frances Gary Powers) when he was awarded the Silver Star.

So far this year, I have invested a week of my vacation time to support this cause! I’m doing my part, but I could probably do more.

When I saw the email several months ago to register for the Advocacy Forum in DC, I registered immediately and send a note to Salli Bollin, Executive Director for the Northwest Ohio, Alzheimer’s Association to let her know that I registered and was going. I just knew that I had to be there to share my Mom’s story for her.

It’s Time! The Alzheimer’s Advocacy Forum finally arrived. I spent several days prior to the event preparing my tweets, verifying Twitter handles for elected officials and verifying my schedule of meetings and events.

I had the privilege to spend more time with the Prichard’s! Rev. Darrell and Alberta Prichard are amazing advocates for this cause. Darrell has Alzheimer’s and his wife Alberta cares for him. They have given up their privacy to participate in a documentary, share their story and fight for Alzheimer’s. This has become their new ministry! They have been followed around by a film crew since late last year. I can’t wait to see the final documentary, after having the honor of being a part of this weeks journey with them. The two guys (Ben and Zack) that are filming the Prichards are amazing young men that have taken on the challenge of immersing themselves into the Prichard’s family. You can see by how they interact with the Prichard’s, that they are a family now.

There were more than 900+ advocates in DC for the Alzheimer’s Advocacy Forum. Including many politicians, network news personalities, celebrities, individuals with the disease, caregivers, family, and advocates.

We arrived in DC on Sunday evening! We met with other advocates from the Northwest Ohio Chapter and other chapters around Ohio and the country. Several of us when out to dinner on that first night. It was great to connect with so many advocates and hear their story.

Monday morning, I went down to register for the conference. I picked up all the program material and went back to my room. I could have gone out and toured DC, relaxed by the pool or visited the spa. That was not what this trip was about, I was there to be an Advocate for my Mom and fight. I went line by line through all the material that they provided and created around 1,000 tweets to share throughout the Alzheimer’s Advocacy Forum. (I actually got blocked by Twitter several times for Tweeting too much)

Monday night, we had our opening session (David Hyde Pierce was the Honorary Chair). I went down to participate in the roll call. This is where every state has someone stand up and state what they did the previous year to advocate for the cause. It was a very emotional experience to hear some of the stories and statements made by each state. Each state had 30 seconds to share what they did. It was so impactful to hear all that is being done. I cried many times throughout this session.

Tuesday Morning, one day before we go to The Hill to educate our elected officials. We attend more sessions around learning, advocacy and sharing our story. Harry Johns, President & CEO of the Alzheimer’s opens up the morning. We also heard from Dr. Francis Collins, Director, National Institutes of Health. He shared a lot of information with us about what they are doing. He also shared that he found $40 million in his discretionary budget and has applied it to Alzheimer’s research. Awesome! We also heard from the Honorable Debbie Stabenow from the great state of Michigan; she is an Alzheimer’s Advocate.

We attended several sessions throughout the day to prepare ourselves for our day on The Hill. We wanted to have one voice and one message. I think we did a good job getting the message down. It’s easy to deliver a message that you have so much passion behind. I think that our personal stories will bring The Hill to tears and action! It brought me to tears and action; still does every day.

Tuesday Night, we had the Alzheimer’s Annual Dinner. It was a night filled with Alzheimer’s champions, advocates, celebrities, politicians, laughter and tears.

We heard from Glen Campbell and his family, several politicians including Sen. McConnell, Sen. Harkin and Sen. Moran.

Senator Harkin said it best “We are not lobbying Congress, but educating Congress”

Wednesday morning we prepared for our day on The HIll. We were all wearing purple sashes. My first time wearing a sash. 🙂

We stormed The Hill in a sea of Purple! It was an amazing sight to have that many advocates on Capital Hill supporting a great cause that no one could not support. We have all been impacted by this disease in one way or another.

We had several meetings on Capital Hill. I participated in Sen. Portman from Ohio, Sen. Brown from Ohio, Rep. Kaptur from Ohio and Rep. Walberg from Michigan.

We were able to meet with all of them except for Sen. Brown. We had an opportunity to meet with one of his aides (Monica Carmean) – She listened and also shared her story with the disease.

All of the Senators/Representatives are champions for the cause. They have all been touched by someone with this disease.

Most of our meetings ran long! Several times, the Senator/Representative was interrupted by their aides, trying to get them to rap up for the next meeting. We had such a compelling message that several of their aides cried during the message and our elected officials were so moved by the personal stories, shared by the advocates.

I had a change to have a one on one conversation with each of our elected officials that we meet with.

Representative Tim Walberg is my Representative. I had a chance to meet him at a Town Hall meeting earlier this year. I was able to ask a question during the town hall meeting and we talked after the Town Hall. He has personally been touched by this disease.

At the end of the day, it was time to head back to the airport and return home to Michigan! Our mission was accomplished for the day, but advocacy is about 365 days a year. We now need to meet with our elected officials when they are back in District. We need to follow-up with emails, hand-written letters and phone calls. We need to spread the word and get our friends and family to become advocates as well.

I feel good about the visits on Capital Hill and feel like I made a difference!

I was moved by all the advocates that I met; our youngest advocate, celebrity advocates, political advocates, caregivers, family members that have lost someone and those with the disease. I am more inspired now to continue the fight and not stop until we have  cure for Alzheimer’s.





About Richard Kenny

My Mom has Alzheimer's and I help my Dad with caregiving!
This entry was posted in Alzheimer's, Caregiver, caregiving, Dementia, Family, fundraising, Memory Loss and tagged , , , , , , , , , , . Bookmark the permalink.

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