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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Cure Alzheimer’s Fund

June is Alzheimer’s & Brain Awareness Month

01 Wednesday Jun 2016

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Alzheimer's & Brain Awareness Month, Caregivers, Cure Alzheimer's Fund, Fundraising, Help Stamp Out Alzheimer's, Helpful Resources, Life After Caregiving, Support system, USAgainstAlzheimer's, Volunteering, Washington

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#endalz, Alzheimer's & Brain Awareness Month, alzheimers, Alzheimers advocacy, alzheimers awareness, dementia

June is upon us, and with the month of the summer solstice comes Alzheimer’s & Brain Awareness Month! It’s the perfect time to get involved in the fight to end this horrific disease, and here are a few ways to do just that.

 

Know the Facts

Learn about Alzheimer’s and then help educate others!

  • Dementia is an umbrella term for a variety of symptoms that may accompany or indicate certain diseases or conditions. Alzheimer’s is a type of dementia. Other types include Lewy body dementia, frontotemporal dementia, vascular dementia, and mixed dementia.
  • Memory loss is just one aspect of Alzheimer’s. The disease also results in problems with executive function, spacial relationships, communication, and judgment. Other symptoms include anxiety, withdrawal, apathy, depression, agitation, paranoia, hallucinations, and delusions.
  • Every 66 seconds, an American develops Alzheimer’s disease.
  • 4 million Americans are living with Alzheimer’s. Of those, at least 200,000 are under age 65.
  • Alzheimer’s takes more lives than breast cancer and prostate cancer combined, yet research is still grossly underfunded.
  • Alzheimer’s is the 6th leading cause of death in the U.S. and the only one that cannot be prevented, cured, or even slowed.
  • In 2015, 15.9 million family and friends provided an estimated 18.1 billion hours of unpaid care for those with Alzheimer’s and other dementias.

Volunteer Your Time

photo-63Give of your time! Contact your local Alzheimer’s Association chapter to find out how you can get involved. If that isn’t in your wheelhouse, reach out to a nearby memory care community. I promise that what you give will come back to you tenfold (and then some!) every single time. No special talents needed. If you’re capable of sitting and holding someone’s hand, you’re qualified!!

Let Your Voice Be Heard

Add your voice to the growing movement calling for an Alzheimer’s semipostal (fundraising) stamp. Take just a moment to encourage the Postmaster General to move forward with a stamp that could raise millions of dollars for Alzheimer’s disease research. The breast cancer stamp has raised over $83 million since its inception! Click the following link to add your encouragement: https://www.uspsoig.gov/blog/putting-stamp-good-causes

You can also reach out to your elected officials, asking them to support increased funding for Alzheimer’s. Consider writing or calling to share your personal story; there’s no better way to underscore just how important an issue is than to put a human face on it. You have the power to do that. If you aren’t sure how to reach your officials, these sites will help:

  • United States House of Representatives
  • United States Senate

Reach Out

Do you know someone caring for a loved one who has Alzheimer’s or another form of dementia? Bring them dinner or offer to provide a couple of hours of respite care so they can have a break to do something they enjoy. Drop off some fresh cut flowers or mow their yard. Small acts of kindness go a long way in letting someone know they aren’t alone.

Likewise, if you have a friend or family member living with dementia, please take time to visit them – no matter what stage they are in. Remember that these are living, breathing human beings who need human contact and love as much as you and I. Even if they can’t communicate, they will feel your energy; even if they don’t recognize you, they will relish the company.

Make a Monetary Contribution

250x126-whiteMarilyn’s Legacy: A World Without Alzheimer’s is a registered 501(c)(3) non-profit organization dedicated to ending Alzheimer’s and supporting and advocating for family caregivers. Marilyn’s Legacy was borne of a desire to honor my mom’s life and ensure that her battle with this disease was not in vain.

We are partnering with UsAgainstAlzheimer’s and the Cure Alzheimer’s Fund, two non-profits that are recognized leaders in this space. It is very important to us that every dollar raised goes directly to the mission rather than salaries and other operational expenses. The founders of UsAgainstAlzheimer’s and the board of directors of the Cure Alzheimer’s Fund cover every dime of overhead ensuring that 100% of your contribution furthers the fight to END ALZHEIMER’S! When you support Marilyn’s Legacy, you can feel confident that the funds donated are being spent wisely.

To make a tax-deductible contribution, visit our donation page.

Join the Brain Health Registry

The Brain Health Registry is an easy way to contribute to research from the comfort of your home. Participants sign up on a website and complete several questionnaires regarding medical history, lifestyle, and current health.

Once the questionnaires are finished, participants are invited to complete a series of tests that might be likened to brain games. Each activity takes just a few minutes. At 3-6 month intervals, registry members receive email reminders to come back and complete additional activities. The hope is that people will continue to be involved for many years, as the longevity of participation helps researchers understand how our brains change over time.

The researchers behind the Brain Health Registry aspire to use the program to build out a pool, or registry, of potential clinical trial enrollees. The hope is that by collecting data on participants in this fashion, the right people can be assigned to studies faster, ultimately accelerating trials.

To join the Brain Health Registry, visit: http://www.brainhealthregistry.org/

Share This Post

Last but not least, share this post. Shout your message from the rooftops! Encourage your personal network to help #endalz! Remember that our collective voice is bold, powerful, and impossible to ignore. Together we can move our agenda forward and realize a world without Alzheimer’s!

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Did you know….

18 Wednesday Mar 2015

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Cure Alzheimer's Fund, Facts & Figures, Helpful Resources, Round Up, Tips, USAgainstAlzheimer's

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alzheimers, Alzheimers advocacy, alzheimers awareness, dementia

 
 
 
 
 
 

  • An estimated 200,000 of the 5 million Americans living with Alzheimer’s are under the age of 65. Many are in their 40s and 50s.
  • When you donate to the Cure Alzheimer’s Fund, 100 percent of funds of your gift goes directly to research. The organization’s founders cover all overhead expenses.
  • Women are at the epicenter of the Alzheimer’s epidemic, which is why Maria Shriver recently announced her new initiative, Wipe Out Alzheimer’s (in partnership with the Alzheimer’s Association).
  • The Longest Day is June 21st and it’s not too early to start planning a dawn to dusk activity to honor your loved one and raise Alzheimer’s awareness!
  • A comprehensive list of helpful resources is just a click away!  -> Resources
  • USAgainstAlzheimer’s makes being an advocate a piece of cake by providing EASY actions you can take to make a real difference. Sign up at http://www.usagainstalzheimers.org
  • The Alzheimer’s Association publishes a comprehensive Facts & Figures Report annually. Check it out to learn more.
  • You can call the U.S. Capitol switchboard to make your voice heard! Simply dial 202-224-3121 and ask for your member of Congress and/or Senators. For each office, give your name, explain that you’re a constituent and an Alzheimer’s advocate, and ask to speak with the Health Legislative Assistant. If that person is not available, ask to leave a message. Share your personal story and explain why you feel it’s critical that they support increased funding for Alzheimer’s.
  • The Long and Winding Road is also on Facebook! Stop by our page for your daily dose of inspiration and information!

 

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An Alzheimer’s Anthem: Remember Me

24 Saturday Jan 2015

Posted by Ann Napoletan in Advocacy and Awareness, Cure Alzheimer's Fund, Events, Face of Alzheimer's, Fundraising, Inspiration, Mom, Music and Art, Research, Ruminations

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#rememberme, alzheimers, alzheimers song, chris mann, cure alzheimers fund, dementia, remember me, rudy tanzi

#remembermeWhile there are plenty of things that stir my emotions, music can really send me into a tailspin. I still haven’t listened to the Glen Campbell song, I’ll Be Me. One day I will, but I’m not ready yet.

Over the past day or so, I’ve seen a couple of Facebook posts regarding a new song and video by Chris Mann, a 2012 finalist on The Voice.

Remember Me is the result of a collaboration between Mann and a rather unlikely suspect, world-renowned Alzheimer’s researcher, neuroscientist Rudy Tanzi.

A recent Rolling Stone article describes how the two met and what inspired the partnership. (Call me crazy, but I feel as though this could be a game changer with regard to bringing Alzheimer’s out of the shadows! Who could have imagined uttering the words “Rolling Stone” and “Alzheimer’s” in the same sentence?)

Tonight as I was driving home, I shook off my apprehension and clicked the play button to listen to this remarkably powerful song for the first time. Within seconds, I found myself sobbing – it’s difficult to describe the raw emotion I felt as the beautiful lyrics cut into my heart. A rush of piercing grief, intense regret, and tremendous loss washed over me – body and soul. It took my breath away in every sense of the word. I couldn’t help but imagine my mom…

I know there’ll come a day, when I have gone away / And the memory of me will fade / But darling think of me, and who I use to be / And I’ll be right there with you again / I hope I’m one thing worth not forgetting / Tell me that you’ll never let me go

You can watch the poignant Remember Me video below, but please click over to iTunes and buy the single, then encourage your friends to do the same. A portion of proceeds will benefit the Cure Alzheimer’s Fund.*

 

Join the #RememberMe movement. Learn more -> here

*Since its inception in 2004, the Cure Alzheimer’s Fund (a 501(c)(3) nonprofit organization) has contributed $27.4 million to research. The founders cover all overhead expenses, and 100% of donations go directly to research. Dr. Rudy Tanzi is a key member of the organization’s research consortium.

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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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