Want to provide input on Alzheimer's research funding?

NF52
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Re: Want to provide input on Alzheimer's research funding?

Post by NF52 »

CoachDD wrote:...As a Certified FM Health Coach, I am spearheading a "healthy living" program for local veterans so I'd be interested in learning more about this. Who should I contact?
Curious ~ do they support the possible benefits of the Bredesen Protocol?...
Any additional information or insight will be appreciated!
Hi CoachDD,
Deep thanks for your kind comments, and deep appreciation for your outreach to veterans' groups in your community. Here's a brief description of the Mission of the PRARP, from this website: https://cdmrp.army.mil/prarp/default
The Peer Reviewed Alzheimer's Research Panel (PRARP) is focused on the needs of both active military and veterans, as well as their families, care providers and communities, so the grants it recommends are not exclusively focused on the military.
Military personnel and other individuals living with traumatic brain injury (TBI) face an increased risk for developing several long-term health problems. These include Alzheimer’s-like dementia, aggression, memory loss, depression, and symptoms similar to those of other neurological diseases. The PRARP (formerly the Militarily Relevant Peer Reviewed Alzheimer’s Disease Research Program) was initiated in 2011 to address the long-term consequences of TBI as they pertain to Alzheimer’s disease (AD). In FY16, the program was expanded to include AD-related dementias (ADRD) research as it pertains to TBI.
Here's a FAQ's page for consumer reviewers: https://cdmrp.army.mil/cwg/faq#19
They're not kidding when they say it takes about 40 hours of work in the 4-6 weeks before the PRARP panels meets to review grant proposals! As a consumer, I am ONLY reviewing to what extent each proposal appears to be innovative and likely to have a high impact for patients, consumers, caregivers and community members, and to what extent it meets the Overarching Challenges and Focus Areas for this year. So for an average of 14 reviews, with two areas each and a 250 word critique, the total is about 7500 words to write. The entire panel meets to discuss each proposal over about 2 1/2 days (Sunday-Tuesday). No funding is decided at this panel. Only reviews which are highly rated are then passed on to a program funding panel that considers them for the available funds (about $15 million this year).

Panel members are not allowed (ever!) to share which panel they were on within the PRARP (there are several each year), which applications they reviewed, who the other reviewers were and the outcome on voting. The public can see which grants actually got reviewed on the PRARP site.

People in the panels are aware of Dr. Bredesen, and of ApoE 4 as a risk factor. I enjoyed conversations in the breaks we got, but often this is time to meet people from other panels and to discuss topics other than research! (The proposals can never be discussed outside the meeting room--sort of like being on a jury!) I don't know (and due to the confidentiality would likely never know) if Dr. Bredesen has ever applied for funding; I suspect not because of the TBI and military focus of these grants.

Here is a helpful summary of the 2019 Overarching Challenges and Focus Areas. https://cdmrp.army.mil/prarp/pbks/prarp ... et2019.pdf

Here is the application form for consumers (and the nominating organization). Julie G would be the person to contact if you wish o apply for 2020, when the panel is tentatively scheduled to meet in late fall (Nov or early Dec.)
https://cdmrp.army.mil/cwg/docs/consumerform.pdf

Finally, here's a fascinating synopsis of research previously supported in part by PRARP, on effects of impaired sleep after TBI on the glymphatic system, which may have huge implications not only for TBI in vets, but for others with disrupted sleep cycles or dysfunction in this system.
https://cdmrp.army.mil/prarp/research_h ... _highlight

Hope this helps!
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Re: Want to provide input on Alzheimer's research funding?

Post by CoachDD »

Thank you so much for all of the information! I will be sure to review it thoroughly!!

And thanks for posting the research about TBI and the effects on sleep. Interestingly, through my own Cognoscopy and NeuroQuant results, I consulted with Dr. Ackerley who believes I've had MULTIPLE TBIs (I am not aware of a severe accident or head injury...but sadly, I can't ask my parents since they've passed on). I used to be a thrill-ride seeker...loved, loved, loved rollercoasters, so I wonder if that has had an effect. There is one called Mind Eraser at the Six Flags here in New England (MA) that I finally stopped going on since it thrashed our heads around so severely. :shock:

I've had uncontrolled, chronic insomnia for years. I sought help everywhere and it wasn't until I addressed the environmental illness that I finally found some relief. I'm still struggling with only 6-7 hours per night on average ~ and it's STILL not straight through. At it's worst, I was sleeping 2-3 hours per night, which went on for many MONTHS. I would not wish that on my worst enemy (well, maybe one) ;) .
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Re: Want to provide input on Alzheimer's research funding?

Post by Julie G »

Deep bow to our very own NF52 who has steadily continued representing ApoE4.Info as a consumer reviewer in 2020 and 2021. She served on two panels of the Congressionally Directed Medical Research Program (CDMRP) in 2021. 

This first was a panel in September on the Peer-Reviewed Alzheimer's Research Panel (PRARP). This year the funds for those grants focused on new "military risk factors" for Alzheimer's, listed below. They are very much what ApoE4.info recognizes as important risk factors and are likely to increase grants with relevance to the ApoE4 community.  

The PRARP has identified 8 Military Risk Factors which are viewed as avenues towards addressing the FY21 PRARP Overarching Challenges. These represent Military Risk Factors most suited to the PRARP's Overarching Challenges:
* Traumatic Brain Injury: Studies investigating how head injuries function as risk factors for subsequent AD/ADRD.
* Neuropsychological/Neurobehavioral: Alterations in cognition or behavior that may be associated with subsequent AD/ADRD.
* Modifiable Risk Factors: Alterations in activities (e.g., exercise, diet, behaviors, etc.) that may be associated with subsequent AD/ADRD.
* Vascular: Studies investigating the vascular (e.g., heart disease, hypertension, hyperlipidemia) contributions to cognitive impairment and dementia risk factors for subsequent AD/ADRD.
* Inflammation: Evaluating the pathways of peripheral and brain inflammation and its relationship to subsequent AD/ADRD.
* Genetic: Genomic analyses or genetic manipulations that investigate the linkages with subsequent AD/ADRD.
* Metabolic: Alterations in bioenergetics (e.g., diabetes, brain metabolism, endocrine dysfunction) that may be associated with subsequent AD/ADRD.
* Sleep: Alterations in sleep patterns (e.g., physiological changes or glymphatic changes) that may be associated with subsequent AD/ADRD.
https://cdmrp.army.mil/prarp/default 

The second panel, which took place this week, was on TBI and Psychological Health (TBIPH), and focused primarily on the military incidence of both TBI and psychological health issues such as PTSD, while recognizing that those issues also affect civilians of all ages. 

The CDMRP has provided us with a press release regarding NF52’s outstanding service.
___
In 2021, NF52 participated as a Consumer Reviewer in evaluating research applications submitted to the Congressionally Directed Medical Research Programs (CDMRP), under the Peer-Reviewed Alzheimer’s Research Program (PRARP) and the Traumatic Brain
Injury and Psychological Health Research Program (TBIPHRP). NF52 was nominated for participation in the program by ApoE4.info, Inc.

As a consumer reviewer, NF52 was a full voting member, (along with prominent scientists)
at meetings to help determine how $175 million appropriated by Congress for Fiscal
Year 2021 for Traumatic Brain Injury and Psychological Health research and $15 million for Peer-Reviewed Alzheimer’s research will be spent.

Consumer reviewers are asked to represent the collective view of patients by preparing
comments on the impact of the research on issues such as diagnosis, treatment, and
quality of life. NF52 notes that “representing the diverse perspectives of military service members, veterans and the civilian community affected by Alzheimer’s disease, TBI and psychological health issues such as PTSD, including those with the ApoE4 allele, is a responsibility I take seriously and value deeply. I appreciate the nominating support of the Board of ApoE4.info, which prioritizes the lived experiences of its members. The commitment of CDMRP to rapidly advancing research may benefit those of us living with or at risk of TBI and Alzheimer’s disease.”

Consumer advocates and scientists have worked together in this unique partnership to
evaluate the merit of research applications since FY21. COL Sarah B. Goldman,
Director of the CDMRP, expressed her appreciation for the consumer advocates’ hard
work. “Integrating consumer perspectives into our decision-making process brings
energy and focus to our research programs. Patients, caregivers, family members, and
advocates help us keep our efforts centered around what is truly important to those
impacted. We very much value this critical input from our consumers who help ensure
that CDMRP’s work remains critical and relevant,” she said.
Researchers applying to the TBIPHRP propose to fund research to understand, prevent
and treat traumatic brain injury and psychological health conditions that accelerates
solutions to improve health and healthcare of Service Members, DOD beneficiaries,
Veterans, and the American public. The TBIPHRP fills important gaps by supporting groundbreaking research while encouraging out-of-the box thinking. 

More information about the CDMRP’s TBIPHRP is available at the website: https://cdmrp.army.mil/tbiphrp/default
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Re: Want to provide input on Alzheimer's research funding?

Post by Julie G »

I also wanted to shine a spotlight on one of our previous interns, Lauren Goring, "Ignoring," who served with us from 9/20 through 2/21. Lauren has been personally affected by Alzheimer's as her grandfather, who served in Vietnam, is living with the disease. Lauren continues to be a member of our community and is also representing us by serving on both the PRARP and TBIPH panels. Please see a recent press release that they've forwarded to our organization.
SCIENTIFIC PEER REVIEW OF CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAMS’ TRAUMATIC BRAIN INJURY AND PYSCHOLOGICAL HEALTH RESEARCH PROGRAM FOR THE DEPARTMENT OF DEFENSE

The Congressionally Directed Medical Research Programs’ (CDMRP), Traumatic Brain Injury and Psychological Health Research Program (TBIPHRP) consumer advocate, Lauren Goring, recently participated in the evaluation of research applications submitted to the TBIPHRP. Lauren was nominated for participation in the program by ApoE4.info As a consumer reviewer, she was a full voting member, (along with prominent scientists) at meetings to help determine how the $175 million appropriated by Congress for Fiscal Year 2021 will be spent on Traumatic Brain Injury and Psychological Health research.

Consumer reviewers are asked to represent the collective view of patients by preparing comments on the impact of the research on issues such as diagnosis, treatment, and quality of life. When commenting on serving as a consumer reviewer, Lauren said that, “I felt my voice as a patient advocate was heard during each research proposal; my goal was to help the panel see what is currently realistic for patients in our current health care system.”

Consumer advocates and scientists have worked together in this unique partnership to evaluate the merit of research applications since FY21. COL Sarah B. Goldman, Director of the CDMRP, expressed her appreciation for the consumer advocates’ hard work. “Integrating consumer perspectives into our decision-making process brings energy and focus to our research programs. Patients, caregivers, family members, and advocates help us keep our efforts centered around what is truly important to those impacted. We very much value this critical input from our consumers who help ensure that CDMRP’s work remains critical and relevant,” she said.

Researchers applying to the TBIPHRP propose to fund research to understand, prevent and treat traumatic brain injury and psychological health conditions that accelerates solutions to improve health and healthcare of Service Members, DOD beneficiaries, Veterans, and the American public. The TBIPHRP fills important gaps by supporting groundbreaking research while encouraging out-of-the box thinking.
 
More information about the CDMRP’s TBIPHRP is available at the website: https://cdmrp.army.mil/tbiphrp/default
Deep bow to Lauren for her service and excellent representation of our community.
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