The event will be held Oct 19-21, and you can attend all sessions, or choose the ones that interest you the most. Registration is still open; just visit http://www.usa2summit.org to register – you don’t want to miss this fantastic conference!
Marilyn’s Legacy is honored to be an ambassador for the 2020 Summit.
On October 12, 2020, my mom would have celebrated her 84th birthday. When I see healthy, vibrant seniors around that age, I can’t help but imagine what Mom would have been like if Alzheimer’s hadn’t gotten in the way.
In the eight years since her death, we’ve come a long way in terms of shining the light on this disease and bringing it out of the shadows. While a certain level of stigma still exists, people are talking much more openly about their personal experiences, many families are asking for help, and progress is being made in terms of the general public understanding the importance of early diagnosis.
Although we don’t always hear about it, encouraging work is being done in research labs across America and the world. I recently attended a Cure Alzheimer’s Zoom call and heard leading researcher Dr. Rudy Tanzi discuss many studies currently underway. That call served as a reminder that forward progress is being made each and every day. Hope is alive.
Back in 2016, I founded Marilyn’s Legacy because I wanted to keep my mom’s memory alive, and I needed a way to give purpose to everything we had been through. I needed to know something positive resulted from the suffering Mom endured. Because of our many generous supporters, in five years of existence, over $19,000 in donations have been directed to UsAgainstAlzheimer’s, the Cure Alzheimer’s Fund, The Ohio State University Alzheimer’s Fund in Neurology, the HFC (formerly Hilarity for Charity) Caregiver Respite Grant Program, and the National Church Residences Hospice Caregiver Support Program (earmarked for dementia families). I’m very proud of what we’ve accomplished, but there is always more to do.
Families of the over 5 million Americans current living with Alzheimer’s and other forms of dementia are facing challenges the likes of which many cannot fathom. No two days are the same and it is an experience that defies all logic.
Losing a lifetime of memories would certainly be horrendous on its own, but that merely scratches the surface when it comes to these diseases. Severe agitation, paranoia, verbally and physically abusive behaviors, delusions, hallucinations, loss of ability to speak, inability to manage the activities of daily living, and eventually inability to swallow – as time goes on, these symptoms and others can become commonplace.
As we mark Mom’s 84th birthday, we hope you might consider making a one-time or recurring tax-deductible contribution to this, our 5th annual giving campaign. To do so, please visit http://marilynslegacy.org/donate.
Other ways to help:
Amazon Smile. When shopping Amazon, please use our Amazon Smile link: http://smile.amazon.com/ch/81-1813012. By your taking this simple action, Amazon will make a donation to Marilyn’s Legacy and it won’t cost you a dime! Bookmark our link and use it each time you shop!
Alzheimer’s Semipostal Stamp. Thanks to the tireless efforts of advocates Kathy Siggins and Lynda Everman, the Alzheimer’s stamp has returned. Before being withdrawn in 2017, the stamp had generated over $1.0 million for NIH supported research. Stamps are available for purchase at most post offices, online at https://store.usps.com/store/product/buy-stamps/alzheimers-S_564204 and by phone at 1-800-STAMP-24. Get yours today! For additional information, please check out this fantastic blog post by Carlen Maddux.
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Thank you for taking the time to visit The Long and Winding Road. We’re grateful for your support! May you and yours remain safe and healthy during the coming weeks and months.
As someone who has been up close and personal with Alzheimer’s disease, I think about the future a lot. If you are caring for or have lost a loved one to AD or another form of dementia, you more than likely know exactly what I’m talking about. What are our odds of being diagnosed at some point in our lives and if that day should come, will there be a treatment or means to slow the progression? As companies like Biogen and Lilly pull the plug on Phase III studies of drugs that once seemed to hold such promise, one has to wonder.
Brain Health
Today we are seeing much greater emphasis on prevention. How can we keep our brains healthy and stave off the disease for as long as possible? Enter the Brain Health Partnership. Led by UsAgainstAlzheimer’s, the BHP is “a comprehensive strategy to ensure brain health is included as an integral element of overall good health, and cognitive decline is identified and addressed in a timely manner.”
We think of heart health as a critical part of overall health; why isn’t the same true of brain health?
Last year, my PCP laughed at me when I asked to have a baseline SAGE test placed in my medical records. (Note: This was the same PCP that diagnosed my mother’s dementia, so she is fully aware of the family history.) At the time, I was stunned and quite frankly appalled. Thankfully, the Brain Health Partnership aims to ensure the medical community takes us just as seriously when we express concerns about cognitive health as they do when we raise concerns about any other aspect of our health.
Women and Alzheimer’s
When it comes to Alzheimer’s disease, women are disproportionately effected. Did you know that two-thirds of Americans living with Alzheimer’s are women and one in six women age 65 and older will develop AD? These numbers are staggering! Alzheimer’s is a women’s health issue – a women’s health crisis – and Be Brain Powerful was created to address it. Marilyn’s Legacy is proud to be an advocacy partner in this important campaign that shines a light on women’s brain health. The mission is simple: To be brain powerful at any age.
Join the Challenge
We invite you to join the 30-Day Brain Health Challenge kicking off on 04.02.19. It’s free and easy; think of it as the first step toward taking control of your own brain health! Each day, you’ll receive a tip or challenge that can easily be incorporated into your daily routine. You can sign up at any time during the thirty days, so please join us and invite your friends to participate as well! Click here to register.
As someone who has been up close and personal with Alzheimer’s disease, I think about the future a lot. If you are caring for or have lost a loved one to AD or another form of dementia, you more than likely know exactly what I’m talking about. What are our odds of being diagnosed at some point in our lives and if that day should come, will there be a treatment or means to slow the progression? As companies like Biogen and Lilly pull the plug on Phase III studies of drugs that once seemed to hold such promise, one has to wonder.