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a list 1000, alzheimers, Alzheimers advocacy, caregiving, dementia, galaxy brain trust, usagainstalzheimers
“Together we can magnify our voice. Validate our journey. Help others too.” ~Meryl Comer, Caregiver, Advocate, and President, Geoffrey Beene Foundation Alzheimer’s Initiative
So often, we, as caregivers, feel isolated, alone, and misunderstood. We talk, but is anyone really listening? Does anyone even care what we have to say?
The last thing we want to believe is that our journey has been in vain. Whether you are living with dementia or are a care partner to someone with dementia, you know you have an abundance of experience and insight that can help others on this path. You know there is purpose in your story.
What if there was a free, easy way for caregivers and individuals who are living with dementia to share personal experiences and valuable information and insights with researchers? What if we could do something to strengthen the collective voice of people just like us? Well, for the first time ever, that opportunity exists!
Every AD support group should join the A List 1000. Think of the power when together we make our patient/caregiver preferences known. ~Meryl Comer
The A List 1000 is a free, anonymous, online community of self-identified, diverse participants who meet any of the following criteria.
- Have been diagnosed with MCI, Alzheimer’s, or another form of dementia
- Believe you are at risk for Alzheimer’s or another form of dementia
- Is or have been a caregiver to someone living with Alzheimer’s or another dementia
A List members will use their collective voice to accelerate research and bring a new level of understanding and value to self-reported patient and caregiver information. Simply put, we want researchers, lawmakers, advocacy groups, the medical community, and other important agents of change to HEAR US and put our valuable input to work!!
We will:
- Help federal and state governments understand how they can provide financial support to families through grants and other means.
- Help researchers understand how doctors, patients, and families can work together to improve the treatment approach and experience.
- Help lawmakers better understand what patients and caregivers need right now and what is most important to them.
- Help advocacy groups to better serve those they support.
- Help test technological devices aimed at making life easier for caregivers and people living with dementia.
- Help further research by participating in clinical trials.
Members of the A List will be offered various opportunities based upon their specific situation. However, it is completely up to each individual to decide which to participate in, and your information is always anonymous! It may be something as quick and easy as an online survey, but it will be highly impactful!
As someone whose life has been changed by Alzheimer’s disease, I’m extremely excited about this first of its kind initiative! This is a unique chance for caregivers and people living with dementia to be heard and to have our opinions and experiences considered and validated. It isn’t often that we get an opportunity to put our hard earned knowledge to work for the greater good – but the A List is making that possible!
I joined the A List to honor my beautiful mother, Marilyn, who left me almost four years ago. I hope you’ll honor someone important to you by registering today! Click here to join the A List 1000 today and give VOICE to your story!
The researchers behind the Brain Health Registry aspire to use the program to build out a pool, or registry, of potential clinical trial enrollees. The hope is that by collecting data on participants through online games and activities, the right people can be assigned to studies faster, ultimately accelerating trials.
As data is collected and analyzed, some people will have an opportunity to increase their level of participation. This might include genetic screening, providing blood samples, sharing medical records, or even participating in a clinical trial. Keep in mind all of these additional activities are completely voluntary.
Respected leaders in Alzheimer’s research and advocacy from around the nation are partnering with UCSF to make this project a success. A few of those partners are the Cleveland Clinic’s Lou Ruvo Center for Brain Health, the Alzheimer’s Prevention Registry, Luminosity, the Alzheimer’s Drug Discovery Foundation, the Alzheimer’s Association TrialMatch Program, Brigham & Women’s Hospital, Massachusetts General Hospital, and the Global Alzheimer’s Platform Foundation! Now that’s a pretty impressive list!
Right now, more than 17 potential treatments are in Phase 3 clinical trials, and leading researchers are optimistic that promising new drugs will reach the market in the next five years.
The Long and Winding Road... 