Alzheimer's Forum 2016!

Alzheimer’s Forum 2016        By: Brooke. M. Westlake

Team NEVADA at the annual ALZ Forum 2016

Cathy & I headed to ALZ Forum 2016

I have never been to an Alzheimer’s forum. The first time I heard about this was through my Nevada Policy Committee Team.   I am so glad that I went to Forum in 2016! It was very educational, and I was able to connect with others that had experience with Alzheimer’s/dementia.

Team Nevada! Representing Nevada for the ALZ Forum 2016

My journey for forum all started when I happened to be on the same flight as my awesome teammate Cathy.  Cathy and I were able to spend time getting to know one another.  I got to hear her personal story about her mother and how Alzheimer's has effected her and her family.  Every time I heard a story about Alzheimer's, it reminded me of why I volunteer and do what I do for the cause.

Monday April 4^th I attended the “First Timers” program for forum.  I listened to speakers, John Funderburk, The Director of Advocacy for the Alzheimer’s Association, Matthew Baumgart, and The Senior Director of Public Policy for the Alzheimer’s Association. Last but not least, the ending speaker Stephanie Vance, 25 year veteran of the Washington D.C. political scene. I enjoyed her the best.

     
The evening event had speaker Bob Marino, Member at large of the Alzheimer’s Impact Movement (AIM).  http://alzimpact.org/wp-content/uploads/2015/01/AIM-Factsheet-2015-web.pdf

Nancy Nelson, Author Blue River Apple.
She is living with Alzheimer's.
www.blueriverapple.com

“State Roll Call” was one my favorite highlights.  Each State has an individual or individuals that came up to the microphone in front of a room filled with 2,500 people. They introduce themselves, shared what their personal connection is or was with the Alzheimer's, and then provide a fact or something interesting that their State had done the prior year in regards to Alzheimer’s.

The two most memorable “State Roll Calls” were Brandon Barkwell “Brandon Barkwell, 15, has attended two Advocacy Forums. His father, Brian, was diagnosed with younger-onset Alzheimer's in his late ‘40s, when Brandon was 5.” Being a mom of a son and having experience with Alzheimer’s, my heart sank when Brandon spoke about his dad. I felt so broken for him. Later on, at forum I saw him and I had to give him a hug and commend him on for his courage.

Team Nevada-State Roll Call!

The other memorable “State Roll Call” was a gentleman around 40s or early 50s. I can not recall his name.  I believe he was representing the State of Arizona.   I can recall crying as he spoke. He was living with Alzheimer’s. He struggled with his speech and his wife was there to guide.  She pointed out the words on the paper one by one. At the end of his roll call the whole audience stood up and cheered for him.

Young Advocates Networking Group Photo.

To tie up the evening I got to have drinks with my Nevada team and then I attended the Young Advocates Networking program.  


This was great, because I got to meet individuals my age that all have or had a personal connections to Alzheimer’s.  I especially enjoyed meeting Brent Oldham, YPAAL Advocacy Chair for Lansing county @YPAALMichigan and Terry Steetman, Co-Chair /Co-Founder of YPAAL of Lansing county.  These two gentleman were also a hoot to hang out with.  I am so proud that they are both bringing awareness to Alzheimer’s

Fellow sister queen, Christine Williamson, Miss Mountain Empire, for MAO-Miss Tennessee 2016

Jessica Rothhaar, Manager, Policy and Advocacy, Alzheimer's Association of Northern California and Northern Nevada. Demonstrating the "Ask"

Tuesday April 5^th was a very busy day.  Presentations were provided on this day as well as break out training “Ask” sessions. The first meeting was for AIM. AIM stands for the Alzheimer’s Impact Movement. It was put together separate from the Alzheimer’s association to support both political parties who are advocates for Alzheimer’s.  This was followed up by a General session on Capitol Hill, followed by a group lunch. We had guest speaker Charlie Cook, political analyst, commentator and publisher of The Cook Political Report.  He was very comical and I enjoyed listening to him; however my highlight from my group lunch was meeting Nancy Nelson www.BlueRiverApple.com She and I had a lovely conversation. When I asked her about her connection with Alzheimer’s she looked at me and said “I have been diagnosed with Alzheimer’s.”  Meeting her was defiantly a highlight because having an individual speak on their own experience with the disease will help break stigmas. I firmly believe that speaking out on this disease is powerful, and lots of caregivers have come forward to speak up and share their story, but the most powerful way to get the message across to the world is to have an individual who has the disease talk about it. It will break your heart, but it will also inspire you.

Pamela Brown, CNN Justice Correspondent & I

 Our afternoon was filled with our second training for “Advocacy for the Federal Ask” followed by Stat Caucuses. Then it was off to get ready for the national dinner.

Pamela Brown, CNN Justice Correspondent

National Alzheimer’s Dinner was a real delight. The Emcee was Pamela Brown, CNN’s Justice Correspondent covering law enforcement.  There were guest speakers from caregivers to individuals who shared their story in several minutes with their loved ones photo on two giant projectors in the room. These individuals brought more personal experience to the cause. Each story unique. Each background different.  I want to commend the Alzheimer’s Association for having a wide range of individuals. We had a same sex couple speak, older gentleman, younger women. The bottom line is that Alzheimer’s does not discriminate against age, sex, religion, color, or political status.

National Stage for the ALZ Dinner

Terry Steetman, Co-Chair /Co-Founder of YPAAL of Lansing county Brent Oldham, YPAAL Advocacy Chair for Lansing county & I.

 We also enjoyed Speakers: Actress and Author, Kimberly Williams-Paisley, Harry Johns, President and Chief Executive Office of the Alzheimer’s Association, Barb Meehan, Alzheimer’s Advocate, Senator Roy Blunt, Chairman of the Senate Appropriations Subcommittee on Labor, Health and Human Services, Joan Uronie Alzheimer’s Association National board of directors and Advisory Group Member, Beth Kallmyer, Alzheimer’s’ Association Vice President of Constituent Services, and Patrick Peyton, Alzheimer’s Impact Movement and Alzheimer’s Association Board of Directors member.

The dinner concluded with several awards. 

The Alzheimer's Association Champion Award, This award honors an individual, organization or company whose actions have promoted greater understanding of Alzheimer's disease and its effects on diagnosed individuals, families and caregivers.

The Alzheimer's Association Outstanding Advocate of the Year Award

Actress and Author, Kimberly Williams-Paisley

Award Winners' Kimberly Williams Paisley & her father

This award is presented annually to an extraordinary Alzheimer's advocate who has shown outstanding leadership. 

The Alzheimer's Impact Movement Humanitarian of the Year Award

The Humanitarian Award is an annual award bestowed upon a public official that has made a significant policy contribution to advancements in research and enhanced care and support for people with Alzheimer's disease.

Wednesday April 6^th- Capital Hill Day!

Senate Minority Leader, Harry Reid & I.

Meeting one with Congressman Mark Amodei's office

Meeting two with  Senator Dean Heller's office

Team Nevada! Cathy, Jacob & I waiting to go
into Amodei's office.

Team Nevada- Washington D.C. Alzheimer's forum 2016

Our last meeting with Senator Harry Reid's office was by far our most amazing ans successful meeting! He agreed to sponsor the HOPE act, and typically he does not sponsor bills. But they thing was, he understood the need. As we sat at the meeting table, Senator Reid told us about a friend of his that had passed away from Alzheimer's. He shared with us his last time seeing his friend and how sad he was that his friend did not know who he was. He understood the disease and knew that this is a national crisis. Its not a political crisis, race crisis, age crisis, man or woman crisis, its an everyone crisis as we continue to deal with the high medical costs.  We are all affected by this disease.