Summer Bulletin

Dear Partners and Supporters of the We Won’t Wait Campaign,
We hope this message finds you well. Each month, we will share updates about our work, provide the latest insights about the news of our field, highlight one of our campaign partners, and provide content you can share with your constituents. This month we focus our attention on increasing clinical trial participation and promoting healthy brain initiatives – both critical to our fight against Alzheimer’s disease.

Campaign Updates

Luncheon Recap. In June, we held our first We Won’t Wait Monthly Gathering to Stop Alzheimer’s Conference Call and Webinar. We hope you’re able to join our next Monthly Gathering in September.

Important Convenings Advancing Our Work
Alzheimer’s Association International Conference (AAIC) in Toronto. In July at AAIC, we hosted an issue roundtable as part of our role as a founding member of the Global Alliance on Women’s Brain Health. The luncheon gathered international stakeholders to collaborate on a unified strategy for solutions for Alzheimer’s disease, particularly for the women who are more likely to suffer from it and experience the emotional and physical tolls of caregiving. At this event, we heard that while the overall rate of Alzheimer's might be leveling off, data shows that for women, it is not.  Our luncheon reinforced the mission of the Global Alliance to push the issue of women and dementia onto the global stage, working to expand beyond the US, Canada and Western Europe into developing countries in Africa, Asia and South America where women's issues are critical and different.
At this event, we announced the launch of Phase II of the Health-eBrain Study, which is intended to investigate the impact the Alzheimer’s caregiving experience has on brain and behavioral health. Phase II’s objective is to evaluate the effectiveness of an intervention that combines virtual case management with a cognitive assessment app, through mobile digital health tools, in reducing depression and improving cognition among informal caregivers. The results will help further the efforts of BrightFocus and The Geoffrey Beene Foundation Alzheimer’s Initiative to provide resources, through innovative research, to those affected by Alzheimer’s and their caregivers.
Democratic National Convention in Philadelphia. As a part of the Democratic National Convention, we joined many of our new partners – National Partnership for Women and Families, National Women’s Law Center, National Consumers League, Jewish Women International, National Organization for Women Foundation and others – to highlight the issue of women and dementia by co-hosting a Women Leading the Way Luncheon featuring Senators Stabenow and Markey, Lynda Carter, as well as Dan and B. Smith. We celebrated prominent women paving the way to achieve our nation’s Alzheimer’s goals. The event was hosted by the Alzheimer’s Readiness Project, an initiative by Eli Lilly and Company.

Policy Push: 
Our Effort to Bring Supports to Caregivers

Last month, we took our fight to the Hill, submitting a testimony to a hearing of the Senate Finance Committee’s Subcommittee on Health. The statement, authored by WA2 President Jill Lesser, called for members to co-sponsor the Alzheimer’s Beneficiary and Caregiver Support Act (S. 3137) which would provide Alzheimer’s disease caregiver support services to informal or non-paid caregivers to both keep patients in the home setting for longer periods of time and improve the quality of life of caregivers, ultimately resulting in lower Medicare and Medicaid program costs. 

Monthly Social Action:  
Share Content about the Health-eBrain Study & Clinical Trial Participation

We are asking all of our women founders and partners to consider sharing information about the Heath-eBrain study this month. We've included messages for you to use. 
Are you yourself – or someone you know – one of the millions of family members looking after a loved one with Alzheimer’s disease? It is important that caregivers know they are not alone. New studies show that the intensity of care, over years, negatively impacts caregivers' cognitive vitality and physical health.
Now, with the launch of Health-eBrain Phase II, we are taking action and calling upon caregivers to join the Health-eBrain study and participate in an online assessment of your cognitive vitality and brain health. Help researchers develop a new “Mobile Mirror for Caregivers.” Visit the Health-eBrain Study website to sign up!
The 1st person to be cured of Alzheimer’s will be in a clinical trial. Joining @WomenAgstAlz 2 help increase trial participation #WeWontWait
The Health-eBrain study tracks changes in the cognitive vitality of AD caregivers who suffer in silence. Join at
Do you know an Alzheimer’s caregiver? Ask them to help scientists learn how caregiving impacts brain performance
Women’s brain health is essential to the fight against Alzheimer’s. Why is it important to you? Tell your story:

Upcoming Events You Don’t Want to Miss
National Alzheimer’s Summit and Out of the Shadows Dinner. Please join us for our National Alzheimer's Summit and Hill Day taking place September 27 – 29 in Washington, DC. We especially hope you can join us for the Out of the Shadows Dinner on September 28 – an evening of inspiration and conversation about this nation’s biggest health crisis for women: Alzheimer’s. More information and registration for the Summit and Dinner can be found here.

Network Update

LatinosAgainstAlzheimer’s: 87th Annual LULAC Convention. Congratulations to the League of United Latin American Citizens (LULAC) on a successful 2016 Annual Convention and gracias for inviting the LatinosAgainstAlzheimer's Network to host a workshop on Latinos and Alzheimer's. The workshop featured LA2 coalition member Fuerza Contra Alzheimer's and highlighted Latino risk factors, prevention strategies, and research engagement opportunities like

In the News…

The reason we keep fighting is that our work is supported by brave individuals who share their experience with the world. This month, Charles Ogletree, a renown Harvard law professor, announced that he has Alzheimer’s disease:
“Ogletree went public with his diagnosis last week during a speech at a Philadelphia conference of the African Methodist Episcopal Church. After the speech, he said, many men came up to thank him and share their stories of being diagnosed with the disease.

‘I’m glad you’re so brave to talk about it,’ Ogletree said the men told him. ‘You’ve given me a sense of what I need to say…I need to talk about my illness as a strength and a wake-up call.’” 

What We Heard That Inspired Us

“We all have a role to play in the fight against Alzheimer’s disease. When women participate in the effort, there is no stopping us. We need to lean on each other.”

- Phyllis Barkman Ferrell, Eli Lilly and Company, in her closing remarks at the Global Alliance on Women’s Brain Health 



Why Diane Rehm's Book Is a Must Read

Diane Rehm, the treasured NPR host of The Diane Rehm Show (and friend to UsAgainstAlzheimer’s), has written a deeply personal, profoundly moving, incredibly honest book about her life before and after her husband’s death. Diane and John were married for 54 years. Admittedly, they were not all blissful — what marriage is? They loved each other but perhaps were not suited for each other. John, a brilliant lawyer, taciturn and introspective by nature, was happy just to be alone. Diane, though she appreciates solitude, is a gregarious, inquisitive, people person through and through. They would fight — and make up gloriously. But there were times when John would go without speaking to Diane for three weeks at a stretch. (Continue reading on Huffington Post).

The Leader's Guide For Seasons Of Caring

In 1986, when my mom was diagnosed with Alzheimer’s, I had no idea what it was — except that it was a disease and it was fatal. I knew no one who had it or, at the very least, talked about it. So I entered into the enigmatic maze of Alzheimer’s without a clue about how to navigate or what to expect was to come.

What I would have given to have the Leader’s Guide for Seasons of Caring. Forget Updike, Faulkner or even Theodore White — I truly think that Dr. Richard L. Morgan, author of this guide, should be given a Pulitzer Prize. Why? Because this book changes and saves lives. (Continue reading on Huffington Post.)