• Home
  • Helpful Resources
  • Reading List
  • Recommended Blogs
  • Marilyn’s Legacy: A World Without Alzheimer’s
  • About Me
  • Contact Me

The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Quotes

Marilyn’s Legacy: 2016 Annual Giving Campaign

11 Tuesday Oct 2016

Posted by Ann Napoletan in Advocacy and Awareness, Fundraising, Marilyn's Legacy, Mom, Quotes, USAgainstAlzheimer's

≈ 8 Comments

Tags

alzheimers, alzheimers awareness, alzheimers caregivers, alzheimers families, alzheimers funding, alzheimers research, dementia, Marilyn's Legacy

It was a year ago on my mom’s birthday, October 12, that I publicly announced my intent to establish a non-profit to keep her memory – and legacy – alive. In early 2016, Marilyn’s Legacy: A World Without Alzheimer’s was born, and shortly thereafter, we were granted tax-exempt status under section 501(c)(3) of the federal tax code.

Our inaugural fundraiser was a great success, and we’ve been pleased to contribute $900 to UsAgainstAlzheimer’s this year. This is an organization near and dear to my heart. I have co-moderated their online support group for three years and have come to know and deeply respect their tireless, determined leadership team. Founders George & Trish Vradenburg personally cover 100% of overhead expenses, ensuring that every dime contributed goes directly toward the goal of ending Alzheimer’s by 2020.

We are optimistic about the potential of preventative and disease-modifying drugs in the pipeline; however, in 2017, Marilyn’s Legacy will broaden our mission slightly. We will seek out opportunities and projects to directly benefit individuals currently living with Alzheimer’s and other forms of dementia.

While a focus on research funding remains critical to our organization’s purpose, we also recognize that millions of Americans are currently in the throes of the illness and need help now. For them, the therapies won’t come soon enough. We feel our mission statement should reflect our profound and passionate belief in person-centered care and each individual’s right to the best possible quality of life at every stage.

This December will mark four years since my mom left this earth, and there are days when it still doesn’t seem real. I suppose people think it should get easier, but I’m not sure that’s the case. Indeed the intense, searing pain subsides over time, but it gives way to a dull ever-present ache. With each milestone or important life event, the list of things I want to share with her grows. Even the mundane, routine happenings can be a stark reminder of her absence and the void in my heart that will never be filled.

Weeks like this are difficult. Mom would have celebrated her 80th birthday on October 12. I’m feeling especially emotional, but equally tenacious. I won’t rest until people understand the devastation of this disease. If your life hasn’t been touched directly yet, count yourself among the lucky ones, but also realize the odds are not in your favor. In the United States, someone develops Alzheimer’s every 66 seconds.

250x126-whiteBecause of my mom’s birthday, we’ve chosen October for our Annual Giving Campaign. Will you help Marilyn’s Legacy change the trajectory of this disease? Will you join the fight to end Alzheimer’s and to support the families currently living its torment on a daily basis? Those who know me well know I find it very difficult to ask for help, but this is one area where that is not the case. I need you. WE need you. Please consider making a tax-deductible contribution today by visiting http://marilynslegacy.org/donate. Thank you!


“ … at age 59, I was diagnosed with early onset Alzheimer’s after a serious head injury doctors say unmasked a disease in the making. Years earlier, I had a front row seat as Alzheimer’s devoured my maternal grandfather and my mother. Now it’s calling for me.”   ~Greg O’Brien, author On Pluto: Inside the Mind of Alzheimer’s

 

 

Share this:

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)
  • Click to share on Pinterest (Opens in new window)
  • Click to share on Reddit (Opens in new window)
  • Click to share on LinkedIn (Opens in new window)
  • Click to share on Tumblr (Opens in new window)
  • Click to email a link to a friend (Opens in new window)

Like this:

Like Loading...

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

≈ 1 Comment

Tags

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! 

 

Share this:

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)
  • Click to share on Pinterest (Opens in new window)
  • Click to share on Reddit (Opens in new window)
  • Click to share on LinkedIn (Opens in new window)
  • Click to share on Tumblr (Opens in new window)
  • Click to email a link to a friend (Opens in new window)

Like this:

Like Loading...

Remembering Pat Summitt

28 Tuesday Jun 2016

Posted by Ann Napoletan in Advocacy and Awareness, Celebrities, Face of Alzheimer's, Grieving, Pat Summitt, Quotes, Saying Goodbye, USAgainstAlzheimer's

≈ Leave a comment

Tags

alzheimers, dementia, Pat Summitt

pat_summitToday, our hearts are heavy with the loss of a legend – a loss at the hand of Alzheimer’s.

May Coach Summitt rest peacefully knowing she impacted countless lives during her time on this earth. What a tremendous coach, role model, and human being.

My mother was an avid follower of women’s basketball and a big fan of Pat Summitt. Both were beautiful, strong, vibrant, seemingly invincible women – and then came Alzheimer’s.

Attitude lies somewhere between emotion and logic. It’s that curious mix of optimism and determination that enables you to maintain a positive outlook and to continue plodding in the face of the most adverse circumstances.

Coach Summitt’s spirit and memory will live on, continuing to touch lives, empower women, and inspire people of all ages. We can honor her life and all the lives lost to Alzheimer’s by boldly continuing to fight this horrific disease. We must be resolute in our determination to #ENDALZ, and we simply cannot stop until the battle is won.

In the coming days and weeks, our hearts and prayers will be with the family, especially son, Tyler, as well as Coach Summitt’s many friends, colleagues, and former players.

Read more about Pat Summitt in this New York Times article and in this press release from UsAgainstAlzheimer’s.

Share this:

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)
  • Click to share on Pinterest (Opens in new window)
  • Click to share on Reddit (Opens in new window)
  • Click to share on LinkedIn (Opens in new window)
  • Click to share on Tumblr (Opens in new window)
  • Click to email a link to a friend (Opens in new window)

Like this:

Like Loading...
← Older posts
© Copyright 2020
All Rights Reserved
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)

Contributor

Contributor

Recent Posts

  • June 7, 2021: A Historic Day
  • UsAgainstAlzheimer’s National Alzheimer’s Summit: Don’t Miss It!
  • Happy 84th Birthday, Mom.
  • Mother’s Day in Heaven
  • World Alzheimer’s Month

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 1,326 other subscribers

Archives

Blog Directory & Business Pages at OnToplist.com

Blog Stats

  • 132,804 hits

Meta

  • Register
  • Log in
  • Entries feed
  • Comments feed
  • WordPress.com
stats for wordpress

Categories

Popular Posts

  • About Me
  • Thank you!
  • A Special Bond
  • Telling the Story
  • Monday ... on Caregivers
  • Caregiving: Imperfections, Weaknesses, Acceptance, and Forgiveness
  • Walking a mile in his shoes...
  • Look for me on VoiceQuilt!
  • CGSN: Focus on YOU!
  • Hiding In the Canned Goods Aisle...and Other Stuff

Recent Comments

  • Betty Trimble on Film Review: Angel’s Perch
  • Ann Napoletan on Caregiver PTSD: Fact or Fiction?
  • Ann Napoletan on Caregiver PTSD: Fact or Fiction?
  • Ann Napoletan on Caregiver PTSD: Fact or Fiction?
  • Ann Napoletan on Caregiver PTSD: Fact or Fiction?

Pages

  • 2013-2014 News Archive
  • Helpful Resources
  • Latest News & Events
  • Postmaster General Letter – Alzheimer’s Semipostal
  • Reading List
  • Recommended Blogs
  • About Me
  • Contact Me
Coming Soon!
Marilyn's Legacy: A World Without Alzheimer's, Inc.
Stay tuned!!

Blog at WordPress.com.

  • Follow Following
    • The Long and Winding Road...
    • Join 446 other followers
    • Already have a WordPress.com account? Log in now.
    • The Long and Winding Road...
    • Customize
    • Follow Following
    • Sign up
    • Log in
    • Report this content
    • View site in Reader
    • Manage subscriptions
    • Collapse this bar
 

Loading Comments...
 

    %d bloggers like this: