Alzheimer’s Round Up – Nov 2018

12 Monday Nov 2018

Posted by Ann Napoletan 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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alzheimers, alzheimers research, be brain powerful, brain health, dementia, diagnosing alzheimers, kid caregivers, sandra day o'connor

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.

Remembering Pat Summitt

28 Tuesday Jun 2016

Posted by Ann Napoletan in Advocacy and Awareness, Celebrities, Face of Alzheimer's, Grieving, Pat Summitt, Quotes, Saying Goodbye, USAgainstAlzheimer's

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alzheimers, dementia, Pat Summitt

pat_summit Today, our hearts are heavy with the loss of a legend – a loss at the hand of Alzheimer’s.

May Coach Summitt rest peacefully knowing she impacted countless lives during her time on this earth. What a tremendous coach, role model, and human being.

My mother was an avid follower of women’s basketball and a big fan of Pat Summitt. Both were beautiful, strong, vibrant, seemingly invincible women – and then came Alzheimer’s.

Attitude lies somewhere between emotion and logic. It’s that curious mix of optimism and determination that enables you to maintain a positive outlook and to continue plodding in the face of the most adverse circumstances.

Coach Summitt’s spirit and memory will live on, continuing to touch lives, empower women, and inspire people of all ages. We can honor her life and all the lives lost to Alzheimer’s by boldly continuing to fight this horrific disease. We must be resolute in our determination to #ENDALZ, and we simply cannot stop until the battle is won.

In the coming days and weeks, our hearts and prayers will be with the family, especially son, Tyler, as well as Coach Summitt’s many friends, colleagues, and former players.

Read more about Pat Summitt in this New York Times article and in this press release from UsAgainstAlzheimer’s.

A Story for Valentine’s Day & Beyond

13 Saturday Feb 2016

Posted by Ann Napoletan in Advocacy and Awareness, Blogging, Books, Caregivers, Celebrities, Face of Alzheimer's, Helpful Resources, Inspiration, Tips, USAgainstAlzheimer's

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alzheimer's books, alzheimers, Alzheimers advocacy, alzheimers caregiving, b smith, barbara smith, before i forget, dan gasby

cover Last fall, I had the pleasure of attending a WomenAgainstAlzheimer’s dinner where Barbara (B.) Smith and husband, Dan Gasby, were honored for their Alzheimer’s advocacy work. You may know B. as a chef, restaurateur, entrepreneur, author, lifestyle expert, television host, magazine publisher, or supermodel – this lady has quite a resume!

What you may not know is that Barbara was diagnosed with younger onset Alzheimer’s in 2013 when she was just 64 years of age.

Today, Dan and B. work tirelessly to bring attention to the impending social crisis that is Alzheimer’s disease. They’ve recently written a book entitled, Before I Forget: Love, Hope, Help & Acceptance in Our Fight Against Alzheimer’s, chronicling their story, and whether you have been touched by Alzheimer’s (yet) or not, I suggest you pick up a copy and read it.

Dan writes with a courage and forthrightness that we don’t always see. He shares the good, the bad, and the ugly, in an enlightening and even validating style for those of us who have been through the journey. As I read each page, I found myself nodding, “YES, I’ve felt that way” or “Oh, I remember when that happened to us.”

Throughout the book, Dan shares practical tips based on his own experience. He discusses how this journey has affected the couple’s marriage and some of the things he has found help him cope on a daily basis. Before I Forget is a book about Alzheimer’s, but make no mistake – first and foremost, it’s a love story.

In a recent Alzheimer’s Talks call, Dan encouraged listeners to “do one thing” to move us forward in this fight. Read more about that call in my recap of a very compelling, thought-provoking hour with Dan. You can find it by visiting my friends at UsAgainstAlzheimer’s. Thank you to Trish Vradenburg and Virginia Biggar for allowing me to share my thoughts in A Love Story: B. Smith & Dan Gasby.