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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Tag Archives: usagainstalzheimers

UsAgainstAlzheimer’s National Alzheimer’s Summit: Don’t Miss It!

18 Sunday Oct 2020

Posted by Ann Napoletan in Advocacy and Awareness, Events, Marilyn's Legacy, USAgainstAlzheimer's

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alzheimers, bethechangeusa2, dementia, usa2summit, usagainstalzheimers

Due to COVID-19, this year’s UsAgainstAlzheimer’s National Summit is a FREE virtual experience jam packed with outstanding speakers and topics!

The event will be held Oct 19-21, and you can attend all sessions, or choose the ones that interest you the most. Registration is still open; just visit http://www.usa2summit.org to register – you don’t want to miss this fantastic conference!

Marilyn’s Legacy is honored to be an ambassador for the 2020 Summit.

10/25/20 UPDATE: All sessions are now available to view on demand at https://www.usa2summit.org/.

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Fighting Alzheimer’s in Columbus & Washington!

25 Sunday Sep 2016

Posted by Ann Napoletan in Advocacy and Awareness, Events, Ruminations, USAgainstAlzheimer's, Walk to End ALZ, Washington, World ALZ Month

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alzheimers, Alzheimers advocacy, dementia, national alzheimer summit, out of the shadows, usagainstalzheimers, Walk to End Alzheimer's

4mmemwall_sm

-2015 Walk

There’s a feeling of advocacy in the air! Tomorrow, I’ll don purple from head-to-toe and participate in my 8th Walk to End Alzheimer’s!! I’ve been on the planning committee for the past couple of years, so it’s exciting to be walking again. I look forward to taking everything in and connecting with the meaning, emotion, and excitement of the event. It’s looking like 81 degrees and sunshine – a perfect day!

Then, it’s on to the 3rd Annual UsAgainstAlzheimer’s National Alzheimer’s Summit in Washington. The Summit is a two-day event jam packed with panel discussions that include some of today’s most important voices in Alzheimer’s care, research, and advocacy.

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First Lady Laura Bush will be the keynote speaker for the Out of the Shadows dinner where House Minority Leader Nancy Pelosi and Senator Kelly Ayotte will be honored for their commitment to fighting Alzheimer’s disease. Advocate Greg O’Brien, author of On Pluto: Inside the Mind of Alzheimer’s, will also be honored for the hope and courage he displays each day in his own battle against this disease.

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-2015 Summit

 

Capping off the event, we’ll spend a day on Capitol Hill meeting with Senate and Congressional offices, telling our personal stories and asking for additional funding in the FY 2017 budget as well as support of the EUREKA Act and the Alzheimer’s Beneficiary and Caregiver Support Act.

The Summit and Hill Day events are certain to be educational, energizing, and filled with hope and determination. Sharing these two days with such devoted and passionate human beings – all focused on the same goal – is truly inspiring. Be sure to look for the hashtags #StopAlzWithAction and #WeWontWait to keep up on what’s happening!

Here are a few photos from 2014 and 2015.

This slideshow requires JavaScript.

 

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Magnify Your Voice: Join the A List 1000 Today!

20 Saturday Aug 2016

Posted by Ann Napoletan in Advocacy and Awareness, Call to Action, Caregivers, Galaxy A List, Helpful Resources, Life After Caregiving, Mom, Quotes, Research, Support system, USAgainstAlzheimer's

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a list 1000, alzheimers, Alzheimers advocacy, caregiving, dementia, galaxy brain trust, usagainstalzheimers

“Together we can magnify our voice. Validate our journey. Help others too.”   ~Meryl Comer, Caregiver, Advocate, and President, Geoffrey Beene Foundation Alzheimer’s Initiative

So often, we, as caregivers, feel isolated, alone, and misunderstood. We talk, but is anyone really listening? Does anyone even care what we have to say?

The last thing we want to believe is that our journey has been in vain. Whether you are living with dementia or are a care partner to someone with dementia, you know you have an abundance of experience and insight that can help others on this path. You know there is purpose in your story.

What if there was a free, easy way for caregivers and individuals who are living with dementia to share personal experiences and valuable information and insights with researchers? What if we could do something to strengthen the collective voice of people just like us? Well, for the first time ever, that opportunity exists!

Every AD support group should join the A List 1000. Think of the power when together we make our patient/caregiver preferences known. ~Meryl Comer

The A List 1000 is a free, anonymous, online community of self-identified, diverse participants who meet any of the following criteria.

  • Have been diagnosed with MCI, Alzheimer’s, or another form of dementia
  • Believe you are at risk for Alzheimer’s or another form of dementia
  • Is or have been a caregiver to someone living with Alzheimer’s or another dementia

A List members will use their collective voice to accelerate research and bring a new level of understanding and value to self-reported patient and caregiver information. Simply put, we want researchers, lawmakers, advocacy groups, the medical community, and other important agents of change to HEAR US and put our valuable input to work!!

We will:

  • Help federal and state governments understand how they can provide financial support to families through grants and other means.
  • Help researchers understand how doctors, patients, and families can work together to improve the treatment approach and experience.
  • Help lawmakers better understand what patients and caregivers need right now and what is most important to them.
  • Help advocacy groups to better serve those they support.
  • Help test technological devices aimed at making life easier for caregivers and people living with dementia.
  • Help further research by participating in clinical trials.

Members of the A List will be offered various opportunities based upon their specific situation. However, it is completely up to each individual to decide which to participate in, and your information is always anonymous! It may be something as quick and easy as an online survey, but it will be highly impactful!

As someone whose life has been changed by Alzheimer’s disease, I’m extremely excited about this first of its kind initiative! This is a unique chance for caregivers and people living with dementia to be heard and to have our opinions and experiences considered and validated. It isn’t often that we get an opportunity to put our hard earned knowledge to work for the greater good – but the A List is making that possible!

I joined the A List to honor my beautiful mother, Marilyn, who left me almost four years ago. I hope you’ll honor someone important to you by registering today! Click here to join the A List 1000 today and give VOICE to your story! 

 

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The Long and Winding Road

Between 2009 and 2015, Marilyn’s Mighty Memory Makers have raised over $22,000 in the fight to #ENDALZ! To all who have supported us, THANK YOU!!

Marilyn, BA (before Alzheimer's)

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