The Roy Blunt Alzheimer's research center at the National Institutes of Health has had its budget slashed as part of the ongoing random cost-cutting program. The center does research on what now-retired Senator Blunt (R - MO) called "our most expensive disease."
It’s so freaking unacceptable on so many levels💕💙It’s not political, it’s science, it’s people’s lives and we are getting so close for our future generations.
I'm so disappointed to see a link to Rachel Maddow on this site…we all have enough troubles dealing with caregiving…no place for politics here.
Rachel Maddow is actually journalism, not politics.
This shouldn’t be considered political. This is factual news we all want to know about. I don’t care if its Rachel Maddox or Fox. Facts are facts and I didn’t realize it had happened until it was shared. Let’s not fall into anger over a link sharing facts.
I apologize for my ignorance. I did not realize that Rachel Maddow was a controversial source for factual news. In a google search of articles in the "News" area with the text "Blunt Alzheimer's Clinic", I only see links to what are probably now considered radical, left-wing news sources (i.e. ABC News, MSN, etc). I would have loved to have posted a link to an article by Fox News on this subject, but alas, I was unable to find that they are covering this story.
The bottom line of the story is that the new administration is cutting staff at a program helping lead the U.S. effort in Alzheimer's Research (including the new Director who was specifically recruited for the position). I would have guessed that of all the people on the planet, the members of this forum would be highly interested in research in Alzheimer's Disease. I stand corrected.
I would expect the Alzheimer's Association to have a comment on this cut. For example, see the 2018 press release from the Alzheimer's Association regarding a bill sponsored by Senator Roy Blunt for a $423M increase to the budget for Alzheimer's research. Side note - this is the same Roy Blunt as in the Blunt Alzheimer Clinic now in the news. I apologize up front if any find this the following link offensive, but I will note the link is internal to the Alzheimer's Association (the sponsor of this forum).
I saw a post on social media this week that there were cuts being made at the NIH. My husband died in August from Alzheimer's and I have been fighting cancer since 2017 so this worried me greatly. Also my daughter works for a major cancer hospital that receives funding for cancer research So I decided to look into it myself and get some facts. Here's what I found:
NIH NEW research grants have been suspended temporarily for review. The review will be quick & proper funding will resume. Old grants already approved will not be cut unless they find fraud.
There were other cuts but only for INDIRECT costs such as administrative & overhead. NO cuts for actual research have been or will be made. Just the bloated overhead. This will mean more funding for actual research.
The Neurosciences group that does Alzheimer's research had a director who was fired by the former administration in Sept 2024 after a 9 month investigation into research misconduct. The interim person was declared acting director internally but not by the administration and was never confirmed even as "acting". He was fired recently along with 10 other administrative employees of the 100 administrative employees in the NIH Neurosciences Division which oversees research grants for Alzheimer's, Dementia & other brain diseases. None of these 11 employees had anything to do with research. There will probably be a new director named shortly.
All of this info is readily available online.
So if you hear anything about this, don't worry. We have enough to worry about. Pray for a cure for this terrible disease. 🙏
the truth: I saw a post on social media this week that there were cuts being made at the NIH. My husband died in August from Alzheimer's and I have been fighting cancer since 2017 so this worried me greatly. Also my daughter works for a major cancer hospital that receives funding for cancer research So I decided to look into it myself and get some facts. Here's what I found:
NIH NEW research grants have been suspended temporarily for review. The review will be quick & proper funding will resume. Old grants already approved will not be cut unless they find fraud.
There were other cuts but only for INDIRECT costs such as administrative & overhead. NO cuts for actual research have been or will be made. Just the bloated overhead. This will mean more funding for actual research.
The Neurosciences group that does Alzheimer's research had a director who was fired by the former administration in Sept 2024 after a 9 month investigation into research misconduct. The interim person was declared acting director internally but not by the administration and was never confirmed even as "acting". He was fired recently along with 10 other administrative employees of the 100 administrative employees in the NIH Neurosciences Division which oversees research grants for Alzheimer's, Dementia & other brain diseases. None of these 11 employees had anything to do with research. There will probably be a new director named shortly.
All of this info is readily available online.
So if you hear anything about this, don't worry. We have enough to worry about. Pray for a cure for this terrible disease. 🙏
Ouch! I'll keep my mouth shut from now on…
and here we are again …. A thread that has evolved into political posts that set all of us on edge no matter what our political leanings are. Stop. This is a forum for dementia support. We all have to be comfortable here.
We all have a lot of reason to be interested in the research, but these cuts are very early in the process. More money doesn't necessarily mean better outcome. You can look at many programs and see that. I think we should Lobby for outcome and remember that we are here for support and to support each other. I value the comments on here and hope no leaves the form over a disagreement.
I'm sad
By way of background, my high level of emotion on this topic is driven by my battle with AD. I was diagnosed with MCI about a year ago. I elected to start treatment with Leqembi, one of the two FDA-approved monoclonal antibody drugs that remove amyloid from the brain (the other is Kisunla). Unfortunately, clinical trials showed the two drugs only reduce the cognitive decline associated with AD by on average about 30%. The next lines of battle in AD seem to be in anti-tau drugs (which are currently undergoing clinical trials), and other drugs which attempt to mitigate the formation of amyloid/tau.
My hope is that these new drugs will come to market in time to stop the progression of AD in my brain, thereby allowing me to return to a "normal" life and die from some other problem rather than slowly lose my mind with AD.
Hence, ongoing research into AD is critically important to me.
So I was greatly saddened with news reports that the Roy Blunt Center for Alzheimer’s and Related Dementias (referred to by the acronym CARD) was recently ordered to reduce 10% of their workforce. The irony doesn't escape me, as Roy Blunt was a Republican Senator for Missouri, who pushed hard for the funding for CARD. Here is a quote from Dr. Tabak who was acting NIH director at the dedication ceremony for CARD:
"The CARD fills gaps that exist across basic science, translational, clinical and data science portfolios of Alzheimer’s and related dementias research. We are not here to compete with existing programs. We are here to compliment research through open science, training and collaboration."
CARD was formed in 2022 as a collaboration between the National Institute on Aging (NIA) and National Institute of Neurological Disorders and Stroke (NINDS), to support basic and clinical research on AD.
CARD is currently lead by Dr. Andrew Singleton. He was born and educated in the UK, with his postdoc work at the Mayo Clinic in Jacksonville, Florida. Singleton has received numerous awards in his career, including an NIH Distinguished Investigator and the American Academy of Neurology Movement Disorders Award.
Singleton is apparently nearing his retirement, and Kendall Van Keuren-Jensen had been tapped to be the acting director of CARD when Singleton departed. Per her LinkedIn profile, Keuren-Jansen was the Senior Scientist/Lead for Neurogenomics and Diagnostics at the NIH from Jan2024 to present. She has been called a leading researcher in the field of AD, and was specifically recruited to join CARD as a replacement for Singleton.
Last Tuesday, 10% of the staff at CARD was fired, including Keuren-Jensen. Singleton wrote in an e-mail that "This loss will have a profound impact on the work we do to understand and treat disease.”
A CARD employee stated "It’s devastating for us—and for anyone who is worried about getting Alzheimer’s, or has already gotten Alzheimer’s, and is hoping there will be better treatments in the future. It’s a huge blow."
Michael Greicius, a neurologist at Stanford University, had this to say about the staff firings at CARD: "CARD has developed infrastructure and a brain trust that’s really unmatched in the world, in terms of its advances in Alzheimer’s and Parkinson’s. Weakening CARD will set Alzheimer’s and Parkinson’s research back substantially.”
This is like a punch in the stomach for my hopes of a speedy development of anti-tau and other drugs for AD.
Im so sorry @LBC83 that is just heartbreaking and so scary. My Grandmother and Mom both had Parkinson’s. I am terrified of it happening to me. The research I’ve been following is amazing and I finally feel like it could be in reach for us. Some things are just plain irreplaceable.
Good information, thank you. Sad for all who love someone battling a dementia or for those like you who fight your own battle. All the best to you. Hold on to your hope!
Nothing to apologize for. Facts are facts!
No place for politics? Tell that to the administration using cuts to Medicaid, the CDC, and USAID as a show of political power.
When someone says “research the facts” they often mean to find media online that tells them what they want to hear. That isn’t research.
You are correct that this forum is not the administration. It is a place to come with our concerns about how a disease affects our loved ones and ourselves by extension. Research into this nightmare is part of that. Talking about it isn’t aggressive. That’s what we do in a democracy and in an online forum. It’s a shame that anyone would come here and belittle another’s concerns about the future of their lo’s health as “politics.”
My Republican representative has not responded at all to any of my requests for information, nor has he spoken to the constituents of his district in any town halls. He ran on being reasonable, and a supporter of law and order. I have since called his office several times asking for specific info on bills they are proposing and have yet to hear anything back. He spent his recess talking to friendly groups and not talking to constituents even though we beg in the FB comments to speak to us. How can you get facts and information from an elected official who ignores you? This is not "politics" at all, instead it is getting our government to work for us and tell us what's going on truthfully.
Exactly. Some of us are just beginning this journey and if the Republican House has a budget bill cutting most of Medicaid, how do we pay for MC, etc? I'm worried about losing everything I've worked for all these years. That is not "political."
So please share where you go to access full interviews, source documents and actual bills and how you determine they are factual and not “facts” that are going to change in a couple days or weeks?
Today, the Alzheimer's Association (the organization sponsoring these AD forums) issued a statement titled "Moving Our Mission Forward". Here is the first sentence "Alzheimer’s isn’t a red or blue issue — it is purple."
I found the statement encouraging, my take-a-way is they are asking us to write our Congressional Representatives regarding any of our concerns about cuts to AD research funding. I plan to follow their advice.
Regarding providing links to sources, here are my sources:
NIH Center for Alzheimer's and Released Dementia's (CARD) This is background info about the org with the recent 10% reduction in staff
Wikipedia article for Andrew Singleton, Current CARD Director
2022 NIH Press Release about Grand Opening for CARD
Info about Kedall Vn Keuren-Jensen, she had apparently recently joined CARD as a planned replacement for Andrew Singleton
Today my inbox included an e-mail from BioPharma Dive Newsletter (which I subscribe to for updated info about AD drug testing). The Newsletter included an article about the recent administration proposed changes to NIH grants. I skimmed the article, it seems to provide a good view from the perspective of the BioPharma industry.
