• Home
  • Helpful Resources
  • Reading List
  • Recommended Blogs
  • Marilyn’s Legacy: A World Without Alzheimer’s
  • About Me
  • Contact Me

The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Research

June 7, 2021: A Historic Day

08 Tuesday Jun 2021

Posted by Ann Napoletan in Health Care Equity, Pharma, Research, Treatments and Therapies, USAgainstAlzheimer's

≈ Leave a comment

Tags

aducanumab, alzheimers, alzheimers therapies, alzheimers treatments, biogen, dementia, fda, Health Care Equity

On June 7, 2021, the FDA approved Biogen drug aducanumab, the first-ever disease-modifying therapy for early stage Alzheimer’s disease. Through the years, we have never let go of hope, but this feels like a true turning point. As pointed out in the UsAgainstAlzheimer’s (UsA2) press release below, with the approval of this first drug, the second, third, fourth, and beyond, should follow at a more rapid pace.

UsAgainstAlzheimer’s AlzTalks – June 9

To hear the latest, be sure to register for UsA2’s June 9th (4pm ET) AlzTalks. Click HERE to register.

Meryl Comer will moderate a discussion that will include one of Biogen’s top leaders as well as George Vradenburg, Chairman & Co-Founder of UsAgainstAlzheimer’s, Russ Paulsen, Chief Operating Officer of UsA2, and advocates Jim and Geri Taylor. Geri lives with Alzheimer’s disease and participated in the Clinical Trial for this therapy.

UsAgainstAlzheimer’s Press Release

Washington, D.C. (June 7, 2021) – UsAgainstAlzheimer’s issued the following statement from George Vradenburg, chairman and co-founder, on the Food and Drug Administration’s decision to approve Biogen’s aducanumab, the first disease-modifying therapy for early-stage Alzheimer’s. 

“This first disease-slowing drug is a dramatic turning point in the fight against Alzheimer’s. Hope will replace despair for many families in the early stages of the disease. 

“By delaying the progression for people in the early stages of the disease, this drug therapy promises to give people more time to live independently and perform daily activities longer.  

“We believe that FDA’s approval of aducanumab will have a positive ripple effect on pharmaceutical innovation far beyond this one drug. To get to the best-in-class drug – and ultimately a cure – there must be a first-in-class drug such as aducanumab. This approval will spark additional investment by other companies in disease-modifying treatments and therapies. With approval of this first drug, drugs 2, 3, 4 will follow, and at a faster pace.  

“We are very concerned about the ability of patients to gain access to aducanumab, particularly those on Medicare fee-for-service without supplemental insurance. And, shockingly, Medicare does not reimburse patients for the expensive PET scans important to determine whether someone is appropriate for this drug. We intend to work with Biogen and Medicare to make access to this drug affordable for every American who needs it.

“After so many disappointments in potential treatments, the Alzheimer’s community now knows this deadly enemy has finally been engaged. At long last, science and time are on our side. Patients in the early stages of the disease will engage with their physicians to learn what can be done, with early detection, to slow their cognitive decline and this disease. 

“Because aducanumab is for people in the early stages of the disease, it will be important for people to learn whether it is right for them. Our new BrainGuide™ platform empowers people with the knowledge and confidence to take the best next steps in managing their own or a loved one’s brain health. BrainGuide is free and easy to access at mybrainguide.org or at 855-BRAIN-411.”

Source: https://www.usagainstalzheimers.org/press/usagainstalzheimers-hails-fda-approval-aducanumab-first-disease-modifying-therapy-early-stage

Lisa Genova’s Comments on the Approval of Aducanumab

Lisa Genova is a Neuroscientist, a #1 international & NY Times Bestselling Author, and a TED speaker. Her comments below can be found on Instagram. Be sure to follow Lisa at https://www.instagram.com/authorlisagenova/.

“Today, the FDA approved Aducanumab, the very FIRST disease-modifying treatment for Alzheimer’s disease.

“Aducanumab is a monoclonal antibody that clears a protein called beta-amyloid from the brain. If you’ve watched my TED talk, you’ll remember that uncleared amyloid can stick to itself, forming amyloid plaques. If the accumulation of amyloid plaques reaches a tipping point, this will trigger a molecular cascade that results in neuron death and a kind of dementia we call Alzheimer’s.

“Think of amyloid plaques below the tipping point as a lit match. After the tipping point, the brain is set on fire.

“This drug blows out the match.

“Aducanumab is currently approved for people with early-stage Alzheimer’s (lit match, brain not yet on fire) who have had a positive PET scan confirming the presence of beta-amyloid in their brains. Dosing will be by infusion, once a month. Not ideal, but a very exciting and hopeful beginning.

“This historic approval will also likely accelerate the development, approval, and reimbursement of biomarkers and simple blood tests for Alzheimer’s. In the near future, we won’t need to rely on PET scans or lumbar punctures to identify the early signs of Alzheimer’s—tests that the vast majority of folks will never have because they’re too expensive, too invasive, and not accessible.

“Much like getting your cholesterol levels checked for heart disease, we’ll soon have a blood test that measures your brain’s relative risk of becoming ablaze with Alzheimer’s. And then, again much like we do for heart disease, we’ll come up with a plan to lower that risk—through diet, exercise, managing stress, getting enough sleep, staying socially and cognitively active, and now, possibly adding a drug that clears beta-amyloid (like statins do with cholesterol).

“Today marks an exciting, massively important step in the battle against Alzheimer’s.“

Source: Lisa Genova via Instagram

Approval of Aducanumab Highlights the Need for Health Equity

While we celebrate the FDA’s approval of the first disease-modifying therapy for early-stage Alzheimer’s, we must not lose sight of the work required to ensure aducanumab and future drugs are available to ALL who need them. Without proper focus on this critical issue, current disparities in health care are only likely to widen as new treatments emerge.

In order for aducanumab to work, early diagnosis is critical. In fact, drugs like this are most successful when started before patients begin showing signs of dementia. Key diagnostics include brain imaging (PET scan) and spinal taps, both requiring high-cost specialty care that is out of the reach of many minority patients; further, Medicare does not reimburse for PET imaging.

Black people are twice as likely and Hispanic people are 1.5 times more likely than white people to have Alzheimer’s or other dementias. The wealth gap is evident in many areas and certainly, health care is one of the most significant. We must make sure the cost of diagnostics and therapies are within reach of every single American who needs them.

To learn more about how health care inequity affects many Black and Latinx families, please read this article about Sonia Cardona and her primary caregiver, daughter Daisy Duarte. Ms. Cardona developed young-onset Alzheimer’s in her 50’s and was misdiagnosed for at least five years despite a very obvious family history.

A landmark Alzheimer’s drug approval would likely deepen racial inequities in dementia care

Source: https://www.statnews.com/2021/06/04/aducanumab-alzheimers-drug-approval-would-likely-deepen-racial-inequities-in-dementia-care/

Share this:

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)
  • Click to share on Pinterest (Opens in new window)
  • Click to share on Reddit (Opens in new window)
  • Click to share on LinkedIn (Opens in new window)
  • Click to share on Tumblr (Opens in new window)
  • Click to email a link to a friend (Opens in new window)

Like this:

Like Loading...

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

≈ Leave a comment

Tags

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.

 

 

 

 

 

Share this:

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)
  • Click to share on Pinterest (Opens in new window)
  • Click to share on Reddit (Opens in new window)
  • Click to share on LinkedIn (Opens in new window)
  • Click to share on Tumblr (Opens in new window)
  • Click to email a link to a friend (Opens in new window)

Like this:

Like Loading...

The Longest Day: 8 Ways to Get Involved

21 Thursday Jun 2018

Posted by Ann Napoletan 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

≈ 2 Comments

Tags

a list, alzheimers, Alzheimers advocacy, alzheimers registries, alzheimers research, alzheimers resources, alzheimers stamp, change act, dementia, Marilyn's Legacy, the longest day

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.

Share this:

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)
  • Click to share on Pinterest (Opens in new window)
  • Click to share on Reddit (Opens in new window)
  • Click to share on LinkedIn (Opens in new window)
  • Click to share on Tumblr (Opens in new window)
  • Click to email a link to a friend (Opens in new window)

Like this:

Like Loading...
← Older posts
© Copyright 2020
All Rights Reserved
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)

Contributor

Contributor

Recent Posts

  • June 7, 2021: A Historic Day
  • UsAgainstAlzheimer’s National Alzheimer’s Summit: Don’t Miss It!
  • Happy 84th Birthday, Mom.
  • Mother’s Day in Heaven
  • World Alzheimer’s Month

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 1,326 other subscribers

Archives

Blog Directory & Business Pages at OnToplist.com

Blog Stats

  • 132,021 hits

Meta

  • Register
  • Log in
  • Entries feed
  • Comments feed
  • WordPress.com
stats for wordpress

Categories

Popular Posts

  • About Me
  • Thank you!
  • A Special Bond
  • Telling the Story
  • Monday ... on Caregivers
  • Caregiving: Imperfections, Weaknesses, Acceptance, and Forgiveness
  • Walking a mile in his shoes...
  • Look for me on VoiceQuilt!
  • CGSN: Focus on YOU!
  • Hiding In the Canned Goods Aisle...and Other Stuff

Recent Comments

  • Ann Napoletan on Caregiver PTSD: Fact or Fiction?
  • Ann Napoletan on Caregiver PTSD: Fact or Fiction?
  • Ann Napoletan on Caregiver PTSD: Fact or Fiction?
  • Ann Napoletan on Caregiver PTSD: Fact or Fiction?
  • Tasha on Caregiver PTSD: Fact or Fiction?

Pages

  • 2013-2014 News Archive
  • Helpful Resources
  • Latest News & Events
  • Postmaster General Letter – Alzheimer’s Semipostal
  • Reading List
  • Recommended Blogs
  • About Me
  • Contact Me
Coming Soon!
Marilyn's Legacy: A World Without Alzheimer's, Inc.
Stay tuned!!

Blog at WordPress.com.

  • Follow Following
    • The Long and Winding Road...
    • Join 446 other followers
    • Already have a WordPress.com account? Log in now.
    • The Long and Winding Road...
    • Customize
    • Follow Following
    • Sign up
    • Log in
    • Report this content
    • View site in Reader
    • Manage subscriptions
    • Collapse this bar
 

Loading Comments...
 

    %d bloggers like this: