Exciting News on the Research Front

With the approaching launch of two exciting new clinical trials, there’s a feeling of optimism in the air. Dr. Suzanne Craft, Professor of Gerontology and Geriatric Medicine at Wake Forest School of Medicine and Genny Matthews of the Alzheimer's Disease Cooperative Study ( ADCS ) joined a recent ActivistsAgainstAlzheimer’s Network teleconference to discuss the latest developments. The SNIFF study and the A4 Trial are getting under way. Dr. Craft is leading SNIFF and the A4 Trial is led by Dr. Reisa Sperling of Harvard Medical School. Both trials are conducted through ADCS. SNIFF is enrolling participants at several sites now

My New Year’s “Wish List” for a National Alzheimer’s Agenda

As a caregiver for my wife, diagnosed with Alzheimer’s Disease (AD) in 2009 at the age of 63, here’s my brief “wish list” for a national Alzheimer’s agenda. Funding changes: First and foremost, our leaders in Congress must make Alzheimer’s a priority in the FY2014 budget by increasing funding for treatment and NIH research. Beyond that, the government must also provide funding for states to disburse to local research labs working on neurodegenerative diseases. Funding should also subsidize clinical trials for potentially new AD medications, but medication labels must note that medication was proven effective only for the number of

Making the Holidays Bright When Alzheimer's Is in the Picture

Editor's note: this piece originally appeared on The Huffington Post The one constant about life is that it is always changing. This dynamic is particularly acute around the holidays. USAgainstAlzheimer's recently asked some of our supporters, who are on the front lines and live this disease every day, for advice on how to tackle this challenging time and create new memories. Here's what they told us: 1. "Keep your expectations reasonable. Prepare for the worst and hope for the best. Holidays won't ever be the way they used to be and every year will be different. But that doesn't mean

Alzheimer's Summit: Some Rare Good News

Editor's note: this blog post originally appeared on Huffington Post 50 It's been a tough couple of months for American healthcare. The sequester - blunt and arbitrary policy that it is - has paralyzed funding for basic medical research. And the launch of the Affordable Care Act has been, depending on your political persuasion, anything from a technical start-up glitch to a predictable debacle. Indeed, the road to improving medicine and healthcare in the latter half of 2013 has been filled with bumps and potholes. Yet, behind the noise, there are signals that a unified effort is arising to tackle

Creating a “Life Celebration” for a Person with Dementia

Even with advanced dementia, my mother could feel moments of joy. I will always feel grateful that we gathered to celebrate her life not after she passed away, but while she was alive and could enjoy being the center of attention. My mother, Judy, told me years ago that when she passed away she wanted me to cremate her and to hold a “life celebration,” not a funeral—a party with family and friends. She pictured us at her lakeside home, reminiscing and laughing. We would spread her ashes on the waves, then talk and eat. As Mom’s dementia progressed, I

The NFL and Alzheimer's - Go Purple

Some of the most watched TV programs each year are NFL games and such large audiences give the NFL a tremendous opportunity to use its broadcasts for public service. To their credit, since 2009 the NFL has used October broadcasts to support breast cancer awareness and help raise money for research. Football players show their support by wearing pink on their uniforms and using pink equipment . Having lost my mother to cancer, and with relatives currently dealing with cancer, I applaud this NFL leadership role and enjoy seeing lots of pink on my TV screen this month. Another opportunity

The Government Shut Down, But Alzheimer's Did Not

Editor's note: this blog post originally appeared on Huffington Post 50 For a tormenting two weeks, the fiscal future of the U.S. seemed to hang in the balance on Capitol Hill. The world's eyes were glued to the Legislative Branch as disagreements boiled into feuds and gave way to iron-fisted gridlock. Markets sputtered. Talking heads excoriated. And while liberal and conservative media outlets disagree on the political consequences, there's a bigger issue no one's talking about: federal research lost. And it looks like it will keep losing. When the government re-opened, it failed to address the arbitrary, across-the-board sequester that

You Can Shut Down the Government, But You Can't Shut Down Alzheimer's

Editor's note: this blog post originally appeared on Huffington Post 50 Here is something that doesn't stop when the government closes down: Alzheimer's. When Louise was 3, her mother, Zoe, who was 29 at the time, was diagnosed with dementia. She is now 42, living in a home care facility unable to walk or talk. Then there is Charlie Collier, who for 25 years traveled the country seeking donations for Harvard University. Charlie gained a national reputation in the field of family philanthropy. Now, he is speaking out -- as much as he is able -- on a topic even

'Surviving Grace': A Story Of Hope And Possibilities

Editor's note: This piece originally appeared on Huffington Post 50. As a determined woman, activist, mother and writer, I've learned to stay humble (kids help you be that), work hard and to never take "no" for an answer. It's been 26 years since my mom was first diagnosed with Alzheimer's disease. This was the first time in my life that I had to accept "no, there is no cure" as the only answer available. At that time, I barely knew what the disease was. What I did know is there was no cure. My mother, this elegant lioness, was reduced

How Blue Button Can Help Caregivers and Beat Alzheimer's

Editor's note: This blog post originally appeared on The Huffington Post It's one of this century's most glaring paradoxes. You can do almost anything on your smart phone -- buy a book, find a taxi, manage your investment portfolio, watch a Yankees game while in Mogadishu -- but you can't get to your health records. The Internet, great disruptive force that it is, can't penetrate the wall between you and your own health information siloed away in your doctors' files. Remember the days, decades ago, when email systems in different companies couldn't speak to each other? It seems like ancient