“Even When I’m Confused, I Don’t Feel Like I Am Lost”

From Todd Ballantine, PCA Patient

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Aduhelm (aducanumab) Approved by FDA on June 7, 2021

The Food and Drug Administration (FDA) approved a new treatment for Alzheimer's disease, Aduhelm (aducanumab) through their accelerated approval pathway, which the FDA describes as being a pathway "used for a drug for a serious or life-threatening illness that provides a meaningful therapeutic advantage over existing treatments…and where there is an expectation of clinical benefit despite some residual uncertainty regarding that benefit." This is the first new Alzheimer's disease treatment to be approved since 2003, and the first drug that has been shown to be disease modifying instead of symptom modifying (in research studies, aducanumab has been shown to decrease levels of amyloid plaque in the brains of people with Alzheimer's disease). Aducanumab has not been shown to improve cognition or halt the disease, but it was shown to slow decline in a limited population of people with Alzheimer’s disease who have early dementia or mild cognitive impairment (a precursor to dementia). Biogen, the pharmaceutical company that developed the drug and conducted the initial clinical trials, is required to conduct post-approval studies (i.e., phase IV studies) on aducanumab to verify benefit of the drug. If clinical benefit of aducanumab is not verified, it could lead the FDA to remove the drug from the market. The CU Alzheimer's and Cognition Center has been chosen as a site for this clinical trial. The Memory Disorders Clinic has also been working to develop processes for including aducanumab as a potential treatment for appropriate patients, and we will provide an update when that information is available. At this time, even though the FDA has approved aducanumab, it is not yet available, because insurance companies, including Medicare, are still determining who will be covered to receive this treatment. We ask that you please be patient while these decisions are made and processes are developed, and if you are interested in seeing if aducanumab is right for you or a family member, please discuss it with your doctor. The approval of aducanumab is surrounded in some controversy, as the FDA advisory panel did not recommend aducanumab’s approval at their meeting on November 6, 2020. The physicians and scientists at the CUACC will remain up-to-date on the scientific evidence and regulatory issues related to aducanumab. In the meantime, continued research and optimal clinical care for people living with Alzheimer's disease and their families remain our absolute priority. We are hopeful that aducanumab will be just the first of a new generation of Alzheimer’s disease modifying therapies. For more information on aducanumab and its approval, please review the press release from Biogen and the press release from the FDA.

Links to more information

Biogen Press Release

FDA Press Release

For more information on the advisory panel meeting on November 6, 2021, check out this New York Times article or this article from Science.

You can find out more about aducanumab here .




IMPORTANT STUDY THAT NEEDS PEOPLE WITH POSTERIOR CORTICAL ATROPHY! Click Here For More Infomation.

The NIH and the Alzheimer’s Association is sponsoring an important study that will shape the way we understand, and eventually treat, people who develop symptoms of Alzheimer’s disease between 40 and 64 years of age. Currently, PCA syndrome is underrepresented. I urge you to consider contacting the study group to see if you can participate. Read more about it here: https://www.clinicaltrials.gov/ct2/show/NCT03507257?cond=Early+Onset+Alzheimer+Disease&draw=2&rank=2

Study Team and how to contact them:
Telephone: 317-963-7436
Email: iuLEADS@iupui.edu


dementia risk factors

Upcoming Events

  • Colorado PCA Support

    Colorado PCA Webinar and Support Group via Zoom: Aduhelm (aducanumab) Approved by FDA

    Monday, June 28, 2021

    8:00 am to 9:00 am (Pacific Time)

    9:00 am to 10:00 am (Mountain Day Time-Denver)

    10:00 am to 11:00 am (Central Time)

    11:00 pm to 12:00 pm (Eastern Time)


    Register for the webinar and submit questions here (all questions must be submitted prior to the event)




  • The Walk to End Alzheimer’s

    Colorado PCA Support

    Walk to End Alzheimer’s
    Denver, CO September 18, 2021
    Durango, CO September 25, 2021
    Eagle, CO September 25, 2021
    Colorado Springs, CO October 2, 2021

    https://act.alz.org/site/SPageServer/?pagename=walk_homepage

Thank you for Your Donations

Linda S. Munilla
John & Joanne Hare
Lauren Munilla
Guin & Ronald Lyster
Janella Rosenthal
Lucy & Anthony Turrisi
An Award-Winning New Mexican Filmmaker
Carol Hawkins
Kurt & Melissa Ronacher
Jessica Fish
Kimberly Best
Jaime & Rose Pabon
Roberta Schain
Michelle Lutz
Dorothy & Dwight Finkel
Jill & Theodore Nelson
Susan Bardwell & Frank Scalise
Dudley A. Eppel, Jr.
Michelle Doe
Andy Weinheimer & Sue Eyler
Robert Yetz
Colleen Peace
Michael & Martha Montano
Barbara & Lee Mendel

Kenneth Tiffany
Edwin Baxter
Thomas & Joy White

Susan & John Quinlan
Victoria Pelak, MD

The Brain and Vision Fund wishes to thank our generous donors! The funds have helped support a student researcher and research presentations on Posterior Cortical Atrophy at National and International Conferences. Donations also made it possible to hire two summer interns beginning June 10, 2019, Stephanie Serva & Vishal Krishnan. Thank you for making a difference for people with PCA.

PCA Summer Interns – Stephanie Serva & Vishal Krishnan

Summer PCA Research Interns Presentations

CBS News Interview

October 24, 2018: Rare Form of Alzheimer’s Affects What The Eyes See – CBS News Interview of Dr. Pelak & Robert Yetz: Click Here

Our Vision

To be a beacon of hope and refuge for all persons affected by Posterior Cortical Atrophy

Our Mission

To serve those affected by Posterior Cortical Atrophy by providing in-person meetings and a virtual space for support, information, and resources

Dementia Resilience – Jill Lorentz Podcast with Dr. Pelak

Take a listen to Dementia Resilience with Jill Lorentz podcast with an interview of Dr. Pelak discussing Posterior Cortical Atrophy and other episodes to help people with PCA and their care partners. Click here: DRwJL & Dr. Pelak – PCA Podcast

NEW FILM ABOUT LIVING WITH POSTERIOR CORTICAL ATROPHY May 8 to Jun 30, 2020
An award-winning independent filmmaker and Director, Ann Bromberg, has released a film entitled Painting Gray about artist Brian O’Connor, who has PCA. The filmmaker and Brian O’Connor and Brian’s wife, Iva Morris, invite you to “buy a ticket/donation to the Guild Cinema” to watch online. A percentage of the donations will go to the Colorado Brain and Vision Fund to help support PCA research and the Colorado PCA Support Group. The cost is minimal ($5). See below for the link to the film.

SUMMARY OF THE FILM
Painting Gray is an intimate biographical sketch of a renowned Native New Mexican painter as he redefines himself in his art studio while battling a progressive brain disorder, PCA, or Posterior Cortical Atrophy. This compelling narrative is unique in its presentation through the cinematic language that focuses on the stigma of the disease, both personal and professional, within a vibrant art community. The outcome of Painting Gray reveals the short and long-term effects of PCA through the mind of master painter Brian O’Connor.
You can view the film HERE

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