I fight for a cure for me & our amazing children❤️

Thursday, June 28, 2018

This really is a full time job 😊

To say we’ve been busy is an understatement! Just a few days after I wrote my previous blog I flew to Washington DC for the Alzheimer’s Association National Advocacy Forum. I flew alone and was able to get to the hotel with an Uber ride. I'm so glad I can still navigate airports and find my way around! Last year the event was at the same hotel so I felt comfortable there, and finding the elevators and my room was pretty easy.

2017-2018 ESAG
I was there alone because Bob had commencement at Cal Poly and would be arriving a few days later. I had to arrive on Friday because we had our last Early Stage Advisor Group meeting and other events leading up to the Forum on Sunday. I can’t believe it’s been a year since I was chosen for the group! What an honor. I met some great people who are now dear friends, all who have Early Stage Alzheimer’s. I really hope we can stay in contact and see each other again😀

Sunday the ballroom was filled with over 1200 people and the energy was contagious. I was surprising comfortable with the noise and all the energy in the room. Normally I don't do well with loud noises and have to carry ear plugs so I don't get too stressed out. The event is very well planned and the training we received before heading over to 'The Hill' on Tuesday was great.

Bob finally arrived after a missed connection early Monday morning! I felt so bad for him. He was exhausted and went to lay down while I attending some meetings. I'm not sure he ever recovered from flying overnight and arriving in the morning.

Marsha Gay Harden & Senator Susan Collins
Monday night was the big event with formal dinner, awards and a few speakers. I was honored this year to be chosen as one of the advocates to speak about the work I’d done and WHY being involved is so important to me.

At first I was worried about the large crowd, and the fact that I hadn't used a teleprompter before. They let me practice and I realized it was much easier than trying to memorize the speech or read from my notes. It is so intuitive and stops scrolling when you stop talking! What a great technology.

I was also happy to see that Senator Susan Collins was speaking, as well as actress and writer Marsha Gay Harden, and others who received awards for their advocacy and dedication to the cause. I knew it was going to be a great night! They are all wonderful strong role models.

Everyone who was honored, including Richard Lui who has been our master of ceremonies for two years, were very humbled and appreciative of the recognition.

When I got on stage that evening I was surprisingly comfortable and excited. Not really nervous at all! The view from the podium was magnificent and I couldn't resist telling everyone how beautiful they looked. I shared my story of getting involved and committing my life to finding a cure and raising awareness. I also shared a little of my journey of living with Younger Onset Alzheimer's disease and how it changed my life, and that of my family forever.

When I was finished everyone stood and clapped and clapped! I was so taken aback. I just stood there and said thank you, God bless you, thank you, God bless you....about three times. I finally walked off the stage with a huge smile on my face! That event and the opportunity to speak was something I hope I never forget. Thank you to the National Alzheimer's Association for your support and your continued faith in me to share my story and deliver a message of hope💜

Our Team!
Tuesday was our last day and a busy one too. We got up early and met with our Congressional team to practice our 'pitch' that we would be delivering that day. We all had a connection to Alzheimer's and each of us had a role to play. We weren't able to see Senator Diane Feinstein or Congressman Swalwell but we did see their staff.

I was in DC for five days and got so much out of the interactions with my peers and the staff of the Alzheimer's Association. I met some new friends and have been texting with them and staying in touch. Events like these are important to me even though they are exhausting. I did a good job of resting every day before dinner and went to bed as early as I could. I would do it again, and I hope I can do it again next year. It's important and it's something that I love

When we got home we had a days rest and then we drive over to UCSF Memory and Aging Center for a full day of testing for my clinical trial. As I said, helping to find a cure and advocating for Alzheimer's research is a full time job for me now!!

Thank you for your continued support and prayers. All of you lift me up and keep me going😘

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