Category Archives: Advocacy and Awareness

Alzheimer’s Round Up – Nov 2018

12 Monday Nov 2018

Posted by in Advocacy and Awareness, Be Brain Powerful, Brain Health, Celebrities, Children and ALZ, Events, Face of Alzheimer's, Genetic Testing, Research, Round Up, Treatments and Therapies, USAgainstAlzheimer's

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Greetings, friends. It’s time for an Alzheimer’s Round Up. As always, thank you so much for reading. Stay tuned for some tips as you prepare for the upcoming Thanksgiving holiday.

Until then…

Be Brain Powerful

This past week, the Be Brain Powerful campaign launched in NYC. This WomenAgainstAlzheimer’s campaign aims to bring awareness to women’s brain health and “ignite a cultural transformation in the way we care for our brains.” We talk about taking care of our bodies, but why don’t we talk about taking care of our brains? Be Brain Powerful will be a formidable health and wellness initiative, and Marilyn’s Legacy is proud to be a partner in this movement! If you had to choose one word to explain what brain health means to you, what would it be? Mine would be, independence.

Alzheimer’s Talks – Nov 20

Coming up at 1pm ET on November 20, UsAgainstAlzheimer’s hosts AlzTalks: A Biomarker Test – Now and in the Future.  During the call, Scott Lewis, Director of Alzheimer’s Disease Diagnostic Pathway at Biogen, will discuss techniques used today to diagnose Alzheimer’s and what diagnosis might look like in the future. In addition, Melissa Bianchi, an expert in patient protections and partner at law firm, Hogan Lovells, will share thoughts on how families should prepare for receiving biomarker confirmation. The call is free, register by clicking here.

Keep Asking Questions

Retired Justice Sandra Day O’Connor, the first female ever named to the U.S. Supreme Court, recently disclosed she has been diagnosed with dementia, most likely Alzheimer’s disease. O’Connor retired from the Court in 2006 to care for her husband, John, who also had the disease. In his touching article for Psychology Today, Greg O’Brien shares the story of meeting Justice O’Connor in Arizona back in the 1970’s and the mentorship and friendship that ensued. Click here to read Greg’s article.

Exciting Research at West Virginia University

Judy Polak was diagnosed with Alzheimer’s in 2014 and is now the only person in the world to undergo a new procedure using ultrasound waves in an attempt to slow the disease. The key is temporarily opening the blood-brain barrier, allowing antibodies from the immune system to pass into the brain and break up the plaques. You can read more about the trial, overseen by Dr. Ali Rezai, Executive Chair of WVU’s Rockefeller Neuroscience Institute, by clicking here.

An 11-Year Old Making a Difference

Hailey Richman is a force to be reckoned with! Her grandmother was diagnosed with Alzheimer’s when Hailey was just four, and that experience sparked her passion for helping others. Noticing there wasn’t much support available for kids, she started Kid Caregivers, a website providing support and encouragement to children affected by the disease. To learn more about how Hailey is using puzzles to help thousands who are living with Alzheimer’s, click here.

 

 

 

 

 

The Longest Day: 8 Ways to Get Involved

21 Thursday Jun 2018

Posted by in Advocacy and Awareness, Brain Health Registry, Call to Action, Caregivers, Fundraising, Galaxy A List, Help Stamp Out Alzheimer's, Helpful Resources, Life After Caregiving, Marilyn's Legacy, Mom, Registries, Research, USAgainstAlzheimer's, Washington

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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

19 Saturday May 2018

Posted by in Advocacy and Awareness, Face of Alzheimer's, Inspiration, Marilyn's Legacy, Mom

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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.”