• 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…

Tag Archives: alzheimers families

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 this to a friend (Opens in new window)

Like this:

Like Loading...
© 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 1,324 other followers

Archives

Blog Directory & Business Pages at OnToplist.com

Blog Stats

  • 128,873 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

  • 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?
  • Tasha 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 1,324 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...
 

    loading Cancel
    Post was not sent - check your email addresses!
    Email check failed, please try again
    Sorry, your blog cannot share posts by email.
    %d bloggers like this: