Advocate

 

The decision  about how, when and where to join to fight against Alzheimer’s/dementia is a very personal one based upon how you’d like to make an impact and which aspects of helping individuals and families impacted by dementia you’d like to support. 

Below are the organizations that I’ve chosen to partner with and volunteer for, because I believe that they are doing great good.  I believe in the programs these non-profit organizations offer to both enhance the lives of persons coping with the disease currently as well as the work they do to eradicate it in the future.

I invite you to learn more about the people and organizations listed below.

–Mara.

Mara’s volunteer roles have included serving as:


Alzheimer’s Association
Board of Directors, Southeast Florida Chapter

The Alzheimer’s Association works on a global, national and local level to enhance care and support for all those affected by Alzheimer’s and other dementias. We are here to help.

We enhance care and support. We have local chapters across the nation, providing services within each community. Find a chapter near you.  Our professionally staffed 24/7 Helpline (1.800.272.3900) offers information and advice to more than 250,000 callers each year and provides translation services in more than 170 languages. We run more than 4,500 support groups throughout the country and connect people across the globe through our online message boards. We provide caregivers and families with comprehensive online resources and information through our Alzheimer’s and Dementia Caregiver Center, which features sections on early-stage, middle-stage and late-stage caregiving.

We advance research.  As the largest non-profit funder of Alzheimer’s research, the Association is committed to accelerating progress of new treatments, preventions and ultimately, a cure. Through our partnerships and funded projects, we have been part of every major research advancement over the past 30 years. Visit our online Research Center. Our annual Walk to End Alzheimer’s® is the world’s largest event to raise awareness and funds for Alzheimer’s care, support and research.

We advocate. The Association is the leading voice for Alzheimer’s disease advocacy, fighting for critical Alzheimer’s research, prevention and care initiatives at the state and federal level. We diligently work to make Alzheimer’s a national priority. Join our effort.

Learn more by visiting our website at: http://www.alz.org/seflorida/

 

Dementia Action Alliance
National Access and Utilization Work Group Co-Chair

There are currently 5.2 million Americans living with dementia, including Alzheimer’s in the United States; an amount equal to all the people combined who live in Oregon and Hawaii. Dementia impacts not only the person affected but also his/her family and friends adding another 15 million people impacted – an amount equal to all the people combined who live in Washington, Colorado, and Utah.

Despite the huge numbers of people affected, dementia care, support, and services in the U.S. are fragmented, often hard to find, and care practices generally are not those recommended by the Institute on Medicine. As a result, people living with dementia and their care partners face enormous struggles including negative outcomes to their social, emotional, and physical well-being.

It does not have to be this way. People can and do live fully with dementia with person-centered care practices and a network of good services and supports. The Dementia Action Alliance is a collective of individuals, organizations, and communities across the country partnering together to improve dementia care.

Learn more by visiting our website at: http://daanow.org/

 

Project Lifesaver International
National Alzheimer’s Crisis Intervention Educator

The primary mission of Project Lifesaver is to provide timely response to save lives and reduce potential injury for adults and children who wander due to Alzheimer’s, autism, and other related conditions or disorders. Project Lifesaver International (PLI) was founded by public safety officers themselves to bring about a solution that facilitates not just the speedy return of wanderers to their families upon being found but the actual rapid location of the wanderers themselves — a strategy that greatly increases the chance that the wanderer will be found alive.

Currently, over 1,300 agencies in 47 states participate in the program—police, sheriff, fire, public safety departments and other emergency responders. The method relies on proven radio technology and specially trained search and rescue teams. Citizens enrolled in Project Lifesaver wear a small transmitter on the wrist or ankle that emits an individualized tracking signal. If an enrolled client goes missing, the caregiver notifies their local Project Lifesaver agency, and a trained emergency team responds to the wanderer’s area. Most who wander are found within a few miles from home, and search times have been reduced from hours and days to minutes. Recovery times for PLI clients average 30 minutes — 95% less time than standard operations.

Working hand in hand with trained public safety agencies, Project Lifesaver International (PLI) will help you save time, money and most importantly, your loved ones.

Learn more by calling us at: 772-446-1275 or visiting the Project Lifesaver International website at: http://www.projectlifesaver.org/

 

USAgainstAlzheimer’s
National Support Group Co-Moderator

USAgainstAlzheimer’s theory of change is rooted in the strong belief that we, the American people, can create the national will to prevent and treat Alzheimer’s by pressuring our political, business and civic leaders to devote the necessary resources to outcomes-oriented research and to reform the drug development systems that currently slow the development and availability of promising treatments. We call this “leadership for the cure.” And it works.

To achieve our audacious but achievable goal we must:

•Increase public and private-sector resources committed to stopping Alzheimer’s disease.

•Accelerate the drug development process to deliver therapies to all those in need.

•Bring dramatic improvements to the standards and systems of care for people living with Alzheimer’s and those who care for them.

New research says Alzheimer’s disease claimed 500,000 lives last year in America, with more than 5 million victims slowly dying of the disease and 44.4 million people world-wide battling some form of dementia. These victims are cared for by 15 million caregivers in the United States and 100 million world-wide. Additional research shows that the direct care costs of Alzheimer’s exceed those of cancer and heart disease. Despite these challenges, we believe what leading researchers tell us: that disease-modifying treatments and a cure are within reach if we commit the necessary level of funds to Alzheimer’s research.

USAgainstAlzheimer’s is mobilizing the most deeply affected communities: Women, African Americans, Latinos, Clergy, Researchers and Caregivers. Each of these coalitions is united under the single relentless force of USAgainstAlzheimer’s, dedicated to stopping the disease and caring for those touched by it. 

Learn more by visiting our website at: http://www.usagainstalzheimers.org/