Marilyn’s Legacy 2018 Annual Campaign

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Greetings readers, friends, and Marilyn’s Legacy supporters!

Autumn is upon us, and this was always Mom’s favorite season; it’s hard to imagine that she would have turned 82 this past Friday and that December 15th will mark six years since she left us. I miss her so much. As Jess and I are just returning from a lovely trip, I am reminded of the many experiences Mom missed out on due to this horrendous illness – Alzheimer’s disease.

As many of you know, Marilyn’s Legacy was borne of a desire to honor her memory and give purpose to our journey – an unexpected experience that defies all logic. Our mission is to increase Alzheimer’s awareness among the masses as well as raise funds to stop this insidious disease and provide support to enhance quality of life for families currently on this journey.

ORIGINAL_12959358_10207650539373514_272841886_oThis month, we embark on our 3rd annual giving campaign. I’m proud to say that because of your generous support, we’ve raised over $10,000 since our inception in 2016. Those funds have been directed to organizations that are leaders in this space. They are driving bold innovative research, advancing national care policies to support caregivers, and working to increase speed, efficiency, and diversity around clinical trials. There is too much good work being done to even begin to touch on all of it, but progress is being made each and every day. We are more hopeful than ever.

Fiscal responsibility is of utmost importance to us at Marilyn’s Legacy, so we can assure you that the organizations who receive funding from us display superior financial stewardship. We know you want your contributions to go straight to the important work taking place, not to paying salaries and overhead. Two of our most important partners, UsAgainstAlzheimer’s and the Cure Alzheimer’s Fund, deploy every dollar of donations to the goals of stopping Alzheimer’s and supporting affected families.

Will you join us in the fight to stop Alzheimer’s and in supporting families currently facing this journey each day? Please consider making a one-time or recurring tax-deductible contribution today by visiting http://marilynslegacy.org/donate.

We sincerely appreciate your support of our mission and wish you a blessed autumn and holiday season.

Ann Napoletan
Founder, Marilyn’s Legacy 💜

P.S. Stay tuned for new content coming soon.

The Longest Day: 8 Ways to Get Involved

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June 21st is more than just the summer solstice. It’s The Longest Day – a time for our thoughts to be with those living with Alzheimer’s and other forms of dementia and their care partners.

It’s a day to spend doing something you love or something to honor a special person living with – or lost to – dementia… a day to raise awareness about AD, how it affects families both emotionally and financially, its staggering impact on our economy and healthcare system, the desperate need for research, education, improved care, and support for family caregivers.

We can’t afford to turn away from the problem, nor can we afford to remain on the current trajectory. If you haven’t yet been personally impacted, odds are you will be. If you have been, you know it’s a life-altering journey.

Get Involved

Learn More. At Marilyn’s Legacy, we proudly support the outstanding work being done by UsAgainstAlzheimer’s. Visit their website to learn more about AD, its colossal impact to our nation both socially and economically, exciting and promising research, and more. Join one of UsA2’s networks, check out their activist toolkit, and join the monthly Alzheimer’s Talks calls to speak directly with leading researchers and other subject matter experts.

Join the A-LIST.  The A-LIST is a first-of-its kind online community of people with or at risk for Alzheimer’s disease, other forms of dementia, or Mild Cognitive Impairment, along with current and former care partners, and the worried well who are concerned about AD. I’m proud to be one of the earliest members of this group that provides members the opportunity to change the face of research by sharing caregiver and patient experiences and preferences. For me, it’s one very easy way to give purpose to our story, or as Meryl Comer often says, “flip the pain.”

Share our Resource List.   Do you know someone touched by Alzheimer’s or another form of dementia that is feeling lost and alone? Share our free Resource List with them, and check back often for updates.

Join a Registry. Another free, easy way to get involved is by joining a registry. Research comes in many forms; some studies simply require online surveys or brain tests that can be taken from the comfort of your living room. Check out the Alzheimer’s Prevention Registry, Brain Health Registry, GeneMatch, and TrialMatch.

Buy Alzheimer’s Stamps. Did you know there is an Alzheimer’s semipostal (fundraising) stamp? The stamp was released in November 2017 and has already raised over $400,000 for research, not to mention the attention/awareness the stamp generates each time it is seen on an envelope! Since its first issuance in 1998, another familiar semipostal – the breast cancer stamp – has raised over $86 million. A sheet of 20 Alzheimer’s stamps costs $13. Visit your local post office or the USPS website to purchase!

Contact Your Representatives. Your voice matters! Call or write your senators and representatives, and ask them to support additional funding for Alzheimer’s. If you have a personal story, share it.  Also ask them to co-sponsor the CHANGE Act, which promotes timely detection and diagnosis, encourages innovative approaches to supporting family care partners, and removes regulatory barriers to disease-modifying treatments. Here is a link to allow you to do this as quickly as you can enter your email address, name, and zip code.

Make a donation. Marilyn’s Legacy: A World Without Alzheimer’s is a 501(c)(3) non-profit organization inspired by my late mother, Marilyn Napoletan. Our mission is to increase Alzheimer’s awareness among the masses as well as raise funds to stop this insidious disease and provide support to enhance quality of life for families currently on this journey. We support organizations that are recognized leaders in this space and have shown superior financial stewardship in regard to use of charitable contributions.

Share This Post on Social Media. In the words of Margaret Mead, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” Little did Ms. Mead know then that in 2018, her words might be more important than ever before.

Personhood: The True Essence Remains

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Personhood. It’s important to know and always remember that the person living with dementia never loses their true essence.

All of these photos were taken during the course of our Alzheimer’s journey, some very early on and others in the final years. Although the painful moments became more frequent and lasted longer as the disease progressed, and despite the delusions, paranoia, hallucinations, agitation, anger, depression, and episodes of acting out, Mom never stopped showing us little reminders that she was still very much “in there.”

Long after she lost the ability to communicate verbally, she found ways to joke and playfully tease. With time, it took more effort to reach her, but when we did, her mannerisms, gestures, and facial expressions told us she was very much “Still Marilyn.”