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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Children and ALZ

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.

 

 

 

 

 

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Book Giveaway

29 Sunday Sep 2013

Posted by Ann Napoletan in Books, Children and ALZ, Giveaways

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The Long and Winding Road...

And the winners are…….. Cyndy and Becky.  Congratulations!! Please send me an email and include your full name and mailing address.  anapoletan(at)gmail(dot)com

Max contacted me and generously donated a copy of the book (in addition to the book I had planned to give away), thus two winners were randomly chosen.

winners

 

 

 

_________________________________________________________________________________________

Why_Did_Grandma_PutAs World Alzheimer’s Month draws to a close, I thought it would be fun to do a book giveaway.

Many of you know I’m a huge fan of 17-year-old Max Wallack, an incredibly gifted third year neuroscience major at Boston University. Max is a tireless advocate and researcher in the Molecular Psychiatry and Aging Laboratory at BU’s Alzheimer’s Disease Center and was recently published in the Journal of Alzheimer’s Disease.

Winner of too many awards and honors to list, he founded Puzzles to Remember at age  12. Together with the Springbok, Max created a unique line…

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Friday Potpourri

27 Friday Sep 2013

Posted by Ann Napoletan in Advocacy and Awareness, Books, Caregivers, Children and ALZ, Events, Giveaways, Helpful Resources, Inspiration, Support system, USAgainstAlzheimer's, World ALZ Month

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Alzheimer's books, alzheimers awareness, caregiver, caregiver stories, usagainstalzheimers, world alzheimers month

heroJust a couple of tidbits that may be of interest…

  • In honor of her mother, World Alzheimer’s Month, and the upcoming NYC Walk to #ENDALZ, author and caregiver Lisa Hirsch will be offering her ebook, My Mom My Hero: Alzheimer’s – A Mother and Daughter’s Bittersweet Journey free of charge for 4 days, Sept 28 through Oct 2. Visit Amazon to download your copy. Thank you for your generosity Lisa!
  • Oct 3 USAgainstAlzheimer’s Conference Call – Register NOW!

From Ginny Biggar of USA2:

Please join me on Thursday, October 3 from 12-1 pm Eastern time for the next ActivistsAgainstAlzheimer’s Network conference call focused on Personal Stories. I may be familiar to some of you. For those that don’t know me, I’m the director of the Activists Network at USAgainstAlzheimer’s. I work with individuals around the country who are coping with Alzheimer’s every day.

usa2_logo_email_header

Part of my focus is listening to the stories that you and others tell about how Alzheimer’s is affecting your lives. Telling these stories is a critical way we can raise awareness about Alzheimer’s.

Why_Did_Grandma_Put

  • Last but not least, don’t forget to enter for a chance to win Max Wallack’s fantastic book, Why Did Grandma Put Her Underwear in the Refrigerator?  All you have to do is – click here – and leave a comment on the contest post. A winner will be chosen at random on Sunday evening (Sep 29).

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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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