Want to provide input on Alzheimer's research funding?

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

Postby Fiver » Mon Oct 29, 2018 7:24 am

Thanks to Julie for putting all the pieces into place. For those who might consider this - or something similar - in the future I'd say it has been well organized and not too much work. It feels good to be a part of the fight.
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Re: Want to provide input on Alzheimer's research funding?

Postby Julie G » Mon Dec 31, 2018 1:21 pm

I just received a press release regarding our members' participation in the first round of peer review. Huge thanks to NF52 & Fiver for taking time out of your busy schedules to help with this important endeavor. I'm very proud to have our interests and voices be represented through you both. Deep bow.
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The Peer Reviewed Alzheimer's Research program (PRARP) consumer advocates, NF52 & Fiver, recently participated in the evaluation of research applications submitted to PRAP sponsored by the Department of Defense. Both were nominated for participation by ApoE4.Info, Inc. As consumer reviewers, they were full voting members and will determine how the $15 million appropriated by Congress for fiscal year 2018 will be spent on PRAP research.

Consumer reviewers are asked to represent the collective views 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, NF52 said "It was a great experience, with panel members, the Scientific Review Office and the Panel chair welcoming outside perspectives. It is also clear that ApoE4 is recognized as an important variable in research." Fiver added, "Overall, it was a very good experience. And I offered to do it again. I just wish there was grant competition specific to apoe4 treatments, which I think needs more direct attention."

Consumer advocates and scientists have worked together in this unique partnership to evaluate the scientific merits of research applications since FY11. Colonel Stephen J. Dalal, Director of the Congressionally Directed Medical Research Programs expressed his appreciation for the consumer advocates' perspective during the scientific review sessions. "Consumer advocates are an integral part of the CDMRP's scientific review process. They provide a key ingredient to the review process, the patient's perspective, which is real and urgent. The collaboration of consumer advocates alongside the scientists' subject matter expertise is truly a unique collaboration that is difficult to find in most medical research programs."

Scientists applying propose to conduct innovative research focused on the longterm consequences of traumatic brain injury as they pertain to Alzheimer's disease related dementias. The PRARP fills important gaps not addressed by other funding agencies by supporting groundbreaking, high-risk, high-gain research while encouraging out-of-the-box thinking.

More information about the DOD's PRARP is available at the website: https://cdmrp.army.mil/prarp/default

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

Postby slacker » Tue Jan 01, 2019 5:16 am

If I'm reading this correctly, the research is "focused on the longterm consequences of traumatic brain injury as they pertain to Alzheimer's disease related dementias", not AD without prior traumatic brain injury. That explains why funding is from DOD!

Many thanks to both NF52 and Fiver. You guys rock.
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Re: Want to provide input on Alzheimer's research funding?

Postby Julie G » Tue Apr 16, 2019 1:09 pm

Hi All! The folks at the DOD's Congressionally Directed Medical Research Program for 2019 is once again looking for novice peer reviewers to serve on their panel. They were so impressed with Fiver & NF52 that they will be asked to participate as senior reviewers.

The focus this year for the DOD is slightly different; they are looking into the connection between Alzheimer’s and Traumatic Brain Injury (TBI). Consumer reviewers are needed who are caregivers of someone who developed Alzheimer’s and who may have suffered from a TBI. If you fall into this category and you'd like to be nominated for this position, please reach out to me with an email at: Juliegee@apoe4.info. To get more of an idea of what's involved, please read the announcement from last year. Thanks for your consideration.
Friends, we’ve recently been approached to nominate member(s) to act in a peer review capacity for the Congressionally Directed Medical Research Program for Alzheimer’s disease research. This is an important role considering that last month Congress approved and appropriated $15 million in funding for the Peer Reviewed Alzheimer’s Research Program for FY18.

They are seeking Consumer Reviewers to act as lay experts on Alzheimer’s, bringing your experience and perspectives to the evaluation of research grant proposals. You would be providing crucial input to the panel, serving alongside scientific and medical experts to represent those most directly affected by Alzheimer’s. Consumer Reviewers help to ensure research selected for funding has the greatest potential of impact. Your perspective and opinion bring relevance and practicality to the review process and is valued by scientists and clinicians. You will also learn about exciting proposed research projects that may lead to new therapies and interventions.

The Consumer Reviewer selection is a multi-step process. The selection process includes submission of an electronic nomination form linked below, a current resume and a written recommendation from an advocacy organization familiar with your advocacy work- that would most likely be us. The application indicates that you must have some affiliation with the military, while that likely wouldn’t hurt, I’ve been assured that is not the case. If selected, you’d be provided a fee for your service and all travel expenses would be covered. Please let me know if you’re interested: juliegee@apoe4.info and I’ll try to navigate the process with you.

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

Postby Julie G » Sun Oct 27, 2019 4:23 pm

Huge thanks to NF52 for participating as a consumer advocate in the Congressionally Directed Medical Research Program’s (CDMRP) Peer Reviewed Alzheimer’s Research Program (PRARP) for the second year in a row! I'm very proud to have our interests and voices be represented through you. On behalf of all, we are deeply grateful. Please see a press release shared by the organization below.
__________
The Congressionally Directed Medical Research Program’s (CDMRP) Peer Reviewed Alzheimer’s Research Program (PRARP) consumer advocate “NF52” recently participated in the evaluation of research applications submitted to the PRARP. NF52 was nominated for participation by ApoE4.Info.Inc. As a consumer reviewer, she was a full voting member (along with prominent scientists) at meetings to help determine how the $15 million appropriated by Congress for Fiscal Year 2019 will be spent on Alzheimer’s research.

Consumer reviewers are asked to represent the views of patients and caregivers 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, NF52 said “Scientists who evaluate innovative grants on the risk of traumatic brain injury (TBI) for late-onset AD and other dementias are eager to hear the voices of those with TBI and ApoE4. In addition to being a Consumer Reviewer, I was asked to speak to the experiences of our members who have both TBI and ApoE4 at the Plenary Dinner for all PRARP participants. Afterwards, clinicians and researchers asked me to thank the ApoE4.Info community for our hard-won wisdom and our advocacy for high-impact research.”

Consumer advocates and scientists have worked together in this unique partnership to evaluate the scientific merit of research applications since 2011. Colonel Stephen J. Dalal, Director of the CDMRP, expressed his appreciation for the consumer advocate’s perspective during the scientific review sessions. “Consumer advocates are an integral part of the CDMRP’s scientific review process. They provide a key ingredient to the review process, the patient perspective, which is real and urgent. The collaboration of the Consumer advocates alongside the scientists’ subject matter expertise is a truly unique collaboration that is difficult to find in most medical research.”

Scientists applying propose to conduct innovative research focused on the long-term consequences of traumatic brain injury as they pertain to Alzheimer’s disease and Alzheimer’s disease related dementias. The PRARP fills important funding gaps not addressed by other funding agencies by supporting groundbreaking, high-risk research while encouraging out-of-the-box thinking.

More information about the CDMRP’s PRARP is available at the website https://cdmrp.army.mil/prarp/default.

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

Postby SusanJ » Sun Oct 27, 2019 6:21 pm

NF52 wrote:“Scientists who evaluate innovative grants on the risk of traumatic brain injury (TBI) for late-onset AD and other dementias are eager to hear the voices of those with TBI and ApoE4. In addition to being a Consumer Reviewer, I was asked to speak to the experiences of our members who have both TBI and ApoE4 at the Plenary Dinner for all PRARP participants. Afterwards, clinicians and researchers asked me to thank the ApoE4.Info community for our hard-won wisdom and our advocacy for high-impact research.”


Thank you for doing this NF52 - you are a rock star!

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

Postby TheBrain » Mon Oct 28, 2019 7:29 am

Way to go, NF52! Thank you!
ApoE 4/4 - When I was in 7th grade, my fellow students in history class called me "The Brain" because I had such a memory for detail. I excelled at memorization and aced tests. This childhood memory helps me cope!

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

Postby Fiver » Mon Oct 28, 2019 10:13 am

Thank you!
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Re: Want to provide input on Alzheimer's research funding?

Postby mike » Wed Oct 30, 2019 3:21 pm

You're my hero!
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Re: Want to provide input on Alzheimer's research funding?

Postby CoachDD » Thu Oct 31, 2019 11:54 am

I watched one of the videos. . .this is so great! Kudos to Fiver and NF52 for their continued participation and support!

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? In the program I am developing, I will be introducing the benefits of IF and Keto, as well as some basic information around the "Cognoscopy".

Any additional information or insight will be appreciated!
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