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a list, alzheimers, Alzheimers advocacy, alzheimers registries, alzheimers research, alzheimers resources, alzheimers stamp, change act, dementia, Marilyn's Legacy, the longest day
June 21st is more than just the summer solstice. It’s The Longest Day – a time for our thoughts to be with those living with Alzheimer’s and other forms of dementia and their care partners.
It’s a day to spend doing something you love or something to honor a special person living with – or lost to – dementia… a day to raise awareness about AD, how it affects families both emotionally and financially, its staggering impact on our economy and healthcare system, the desperate need for research, education, improved care, and support for family caregivers.
We can’t afford to turn away from the problem, nor can we afford to remain on the current trajectory. If you haven’t yet been personally impacted, odds are you will be. If you have been, you know it’s a life-altering journey.
Get Involved
Learn More. At Marilyn’s Legacy, we proudly support the outstanding work being done by UsAgainstAlzheimer’s. Visit their website to learn more about AD, its colossal impact to our nation both socially and economically, exciting and promising research, and more. Join one of UsA2’s networks, check out their activist toolkit, and join the monthly Alzheimer’s Talks calls to speak directly with leading researchers and other subject matter experts.
Join the A-LIST. The A-LIST is a first-of-its kind online community of people with or at risk for Alzheimer’s disease, other forms of dementia, or Mild Cognitive Impairment, along with current and former care partners, and the worried well who are concerned about AD. I’m proud to be one of the earliest members of this group that provides members the opportunity to change the face of research by sharing caregiver and patient experiences and preferences. For me, it’s one very easy way to give purpose to our story, or as Meryl Comer often says, “flip the pain.”
Share our Resource List. Do you know someone touched by Alzheimer’s or another form of dementia that is feeling lost and alone? Share our free Resource List with them, and check back often for updates.
Join a Registry. Another free, easy way to get involved is by joining a registry. Research comes in many forms; some studies simply require online surveys or brain tests that can be taken from the comfort of your living room. Check out the Alzheimer’s Prevention Registry, Brain Health Registry, GeneMatch, and TrialMatch.
Buy Alzheimer’s Stamps. Did you know there is an Alzheimer’s semipostal (fundraising) stamp? The stamp was released in November 2017 and has already raised over $400,000 for research, not to mention the attention/awareness the stamp generates each time it is seen on an envelope! Since its first issuance in 1998, another familiar semipostal – the breast cancer stamp – has raised over $86 million. A sheet of 20 Alzheimer’s stamps costs $13. Visit your local post office or the USPS website to purchase!
Contact Your Representatives. Your voice matters! Call or write your senators and representatives, and ask them to support additional funding for Alzheimer’s. If you have a personal story, share it. Also ask them to co-sponsor the CHANGE Act, which promotes timely detection and diagnosis, encourages innovative approaches to supporting family care partners, and removes regulatory barriers to disease-modifying treatments. Here is a link to allow you to do this as quickly as you can enter your email address, name, and zip code.
Make a donation. Marilyn’s Legacy: A World Without Alzheimer’s is a 501(c)(3) non-profit organization inspired by my late mother, Marilyn Napoletan. Our mission is to increase Alzheimer’s awareness among the masses as well as raise funds to stop this insidious disease and provide support to enhance quality of life for families currently on this journey. We support organizations that are recognized leaders in this space and have shown superior financial stewardship in regard to use of charitable contributions.
Share This Post on Social Media. In the words of Margaret Mead, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” Little did Ms. Mead know then that in 2018, her words might be more important than ever before.
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!
The Long and Winding Road... 