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

Wednesday, April 5, 2017

National Advocacy Forum & good times in Washington DC!!

What a wild ride its been the past few weeks!  Time seems to be flying by and every day brings challenges and victories.

We had a wonderful experience in Washington DC at the 2017 Advocacy Forum. It was the first time we attended and were overwhelmed with the support and kindness of everyone we met. The data and the statistics given were overwhelming and sobering. I think I knew most of them but do you realize every 66 seconds someone in America develops Alzheimer's? Or that there are over 5.5M Americans living with Alzheimer's today? And over 200,000 of them are under the age of 65! Staggering statistics considering the cost of care. We spent several days getting training and education and then went to Capital Hill to share our stories and ask for support for funding and research.

They had special breakout sessions for those with Alzheimer's and I was able to meet several people who, like me, are very vocal and able to care for themselves with minimal support. It was encouraging to hear their stories and to learn from them how they deal with daily life and memory issues. Several of them are on the National Early Stage Advisory Group. I applied a few months ago to be part of this group and hope to be interviewed later this month.  It's a one year role focusing on raising awareness about early stage issues, informing the public about all the wonderful things the Alzheimer's Association does, advocating and speaking to the media, and providing input to external groups regarding early stage issues.  Wish me luck😊

Bob and I also were asked to support Maria Shriver as she testified before the Senate Special Committee on Aging. Originally she wanted to use pictures of my brain that showed the Amyloid and Tau protein build up, but it was too difficult to get a medical release in time. She did mention me in her testimony and Bob and I also joined her and her staff at an event at the Equinox Sports Club in DC kicking off the Move For Minds event.  Move For Minds is a one day, eight city event on June 4th.  Check it out and register! You will learn how to keep your brain healthy, have an amazing breakfast and have a fabulous workout!!

The combination of being surround by 1300 people from around the United States with a passion to find a cure, and connecting with Maria Shriver again was overwhelming!  I had to take a few breaks and spent some time in our room to rest.  At Intel, events like this were common place and fun, now they are overwhelming and exhausting for me.  

There are many days I feel almost normal, but when I travel and get in uncomfortable or stressful situations I can tell that my coping mechanisms are different now.  I used to be invigorated by people and events, now they are exhausting and I can only take small doses at a time.  I'm learning more and more each week how to deal with my 'new normal'.  But that's OK. I have a wonderful husband and caregiver, amazing children and grandchildren and many many friends who keep me smiling and give me support when I need it!

Thank you all for your continued prayers & support💜

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