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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: ALZ Assn – National

World Alzheimer’s Month

02 Saturday Sep 2017

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Facts & Figures, Meme, World ALZ Month

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alzheimers, alzheimers facts and figures, dementia, world alzheimers month

Note correction to second bullet point, this should read “5.5 million Americans…”

IMG_9139

Data Source: Alzheimer’s Association 2017 Facts & Figures

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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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World Alzheimer’s Day: How Can You Make a Difference?

17 Thursday Sep 2015

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Caregivers, Fundraising, Helpful Resources, Life After Caregiving, Prevention, Quotes, Ruminations, Tips, USAgainstAlzheimer's, Volunteering, Walk to End ALZ, Washington, World ALZ Month

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alzheimers, Alzheimers advocacy, alzheimers awareness, alzheimers caregivers, alzheimers prevention, alzheimers volunteerism, dementia, world alzheimers day

According to the World Alzheimer Report 2015: The Global Impact of Dementia, published by Alzheimer’s Disease International (ADI), there are 46 million people living with dementia globally. Without a medical breakthrough, that number will rise to 131.5 million by 2050. Worldwide, in 2015 alone, there will be 9.9 million new cases of dementia; that’s a new case every THREE seconds.

World Alzheimer’s Day is September 21, 2015, and it’s a great time to pause and think about what you can do to make a difference. You don’t have to be a brilliant scientist or a millionaire to make a significant impact.

Here are a few ideas to consider. If you have others, please share them by posting a comment below!

Take Care of a Caregiver

  • Deliver lunch, dinner, or a plate of homemade cookies. Send a restaurant gift card, or put together a group of folks willing to take turns cooking a couple of meals each week.
  • Mow the lawn, rake leaves, or offer to help with another household task.
  • Put together a spa basket! Think bath salts, lotion, candles, lavender essential oil, comfy slippers, et cetera.
  • Offer to hold down the fort for a couple of hours to give a caregiver a much-needed break. Perhaps they’d like to go shopping, see a movie, read a book, or just relax!
  • Simply send a card to say you care and offer your support.

Volunteer Your Time and Talent

  • Spend time visiting with memory care residents.
  • Volunteer at an Alzheimer’s Association event, join a committee, help with a special project, or offer to make phone calls.
  • Form a volunteer group to make fidget quilts or comfy blankets for people living with Alzheimer’s.
  • Volunteer to provide respite care during a caregiver support group meeting.
  • Become a support group leader.

Donate or Fundraise

  • Make a monetary donation to your favorite Alzheimer’s organization.
  • Sign up for Walk to End Alzheimer’s or The Longest Day and set a fundraising goal.
  • Donate puzzles, picture books, dolls, art supplies, or CDs to a nearby memory care unit or adult day care.
  • Sign up for AmazonSmile and designate your favorite Alzheimer’s organization as your charity.

Be an Advocate

  • Write or call your representatives in Washington and ask for their support on Alzheimer’s issues.
  • Commit to sharing an Alzheimer’s-related fact or statistic with three friends.
  • Use social media to help raise awareness.
  • Join the Alzheimer’s Prevention Registry!
  • Sign a petition.
  • Share your story!
  • Check out the Action Center at UsAgainstAlzheimer’s for more ideas!

Focus on Prevention

  • Commit to walking for 30 minutes at least 3x per week.
  • Each day, replace one unhealthy item in your diet with a healthier choice.
  • Make a monthly date to get together with friends!
  • Take the stairs instead of the elevator.

As Margaret Mead said, “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”

I’ve been told plenty of times that I’m wasting my energy. After all, I’m just one person can’t change the world My response to that is simple. I may not be able to change the world, but I can certainly make a positive difference – and you can too!

Here’s to World Alzheimer’s Day. May it be more than just another Monday – let’s all do a little something to further the #ENDALZ movement!

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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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