May 052014
 

In a record year for the Alzheimer’s Association Advocacy Forum, nearly 900 advocates gathered on Capitol Hill, compelling Congress to make Alzheimer’s disease a national priority. With representatives present from all 50 states, this event once again brought together those affected by Alzheimer’s and allowed them to share their stories, their passion and their personal challenges living with the disease. Chuck Warner was one of the 900 strong.

From April 7-9, my wife Lisa and I had the opportunity to attend the 2014 Alzheimer’s Association Advocacy Forum in Washington, D.C. This was my first experience as a Forum attendee. I was looking forward to meeting other advocates living with the disease and the opportunity to connect with my peers from the Alzheimer’s Association National Early-Stage Advisory Group.

National Early-Stage Advisors represent individuals living with Alzheimer’s and related dementias and use their voice to educate state and federal officials about the need for improved research funding, care and support programs to support individuals and families affected by Alzheimer’s disease. In this role, advisors advocated for people with Alzheimer’s so that they may receive expedited access to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) through the Compassionate Allowance Initiative. They also advocated for the inclusion of an individual living with dementia to serve on the Advisory Council on Alzheimer’s Research, Care, and Services to the National Plan to Address Alzheimer’s Disease.

My experience at the Forum was even more impactful than I could have imagined. This year, a record-breaking 40 individuals living with Alzheimer’s or related dementias registered to attend the Advocacy Forum. Twenty of those individuals were either current or former National Early-Stage Advisors. These numbers represent the largest contingency of individuals living with dementia in the 26-year history of Forum.warner_hill

It was a pleasure meeting fellow advocates living with the disease and I was overcome by the emotional bonding that occurred among this group. The opportunity to spend time with other individuals using their voice and sharing their stories to raise awareness of the unique needs of individuals and families living with Alzheimer’s disease was a powerful experience.

Along with staff from our local Association chapter and other advocates from California, we brought our message to Capitol Hill where we met with Congressman Sam Farr. I have known Congressman Farr for many decades and enjoyed our conversation. Our message – that Alzheimer’s is the most expensive disease in America, with costs set to skyrocket in the years ahead – was heard. But there is more work to be done. The number of Americans with Alzheimer’s disease is growing and at some point the federal government will have to face the financial and economic impact of Alzheimer’s disease on this country.

My experience in Washington, D.C. heightened my resolve to educate others about Alzheimer’s disease and the growing crisis which stands before us. As an advocate, I think it is time for policymakers to get on board and pledge to support the fight to end Alzheimer’s.

Since my return home – and recovery from jet lag – I feel more determined than ever to raise awareness about Alzheimer’s and the consequences for others like me living with the disease, our families and the millions of others who will eventually be impacted. The Forum inspired me to try and do something each day to politely educate those who do not know (or perhaps do not want to know) about Alzheimer’s and the consequences of this disease.

You can join the cause by becoming one of the thousands of Alzheimer’s advocates who are making a difference. At the Alzheimer’s Association, we are working toward a time when we will have effective treatments, preventive strategies and gold-standard care for all people affected by Alzheimer’s disease. To learn more about how you can become an integral part of this movement, visit the Advocacy homepage to become an advocate today.

About the Author: Chuck Warner is a member of the Alzheimer’s Association 2013 National Early-Stage Advisory Group (ESAG). He encourages others living with the disease to be actively involved in planning for their future and engage in a fulfilling life. “An Alzheimer’s diagnosis feels like the end of the world, but it’s not – you can make a difference.”

 

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Apr 072014
 

I’m in Washington, D.C. today as an Alzheimer’s advocate. Why? Three years ago my life took a very unexpected change in course. In 2011 at the age of 56, I was diagnosed with younger-onset dementia, probable frontotemporal dementia (FTD). But my journey, although altered, is by no means over. I have chosen not to let this disease isolate or silence me.

After my diagnosis I found it difficult to locate services and education for people with dementia; everything seemed to be for the caregivers. I started to advocate for more support, and with the help of the Alzheimer’s Association I started a local support group for those affected with Early Stage & Younger Onset Dementias and their caregivers. My involvement with the local chapter of the Alzheimer’s Association led to more advocacy opportunities. I was empowered to share my personal story about this disease, raise awareness and needed funds, while also helping to reduce the stigma associated with dementia.

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As an advocate, I have chosen to use my voice while I still can. It gives me a sense of purpose, and a reason not to give up. I encourage others living with Alzheimer’s and related dementias to consider advocacy as a way to feel empowered and engaged in their own lives.

Last year I attended the Alzheimer’s Association Advocacy Forum for the first time. My experience was an extremely stimulating and overall rewarding opportunity. I felt inspired and motivated by my encounters with other advocates living with dementia. They encouraged me to become more involved. I wanted to contribute by using my insight as a person living with dementia, so I submitted my nomination for the National Early-Stage Advisory Group and I was selected to join the 2013 cohort. Over the past year, I have shared my personal story at the National Alzheimer’s Project Act’s (NAPA) Advisory Council on Alzheimer’s Research Care and Services meeting, attended a Senate hearing for the Subcommittee on Labor, Health and Human Services, and Education, and Related Agencies and met with my state legislators.

It is such a great feeling to connect with others living with dementia and reminds me that I am not alone. With my expectations fulfilled from the last year’s Forum I look forward to continuing to encourage Congress to address the needs of individuals and families affected by Alzheimer’s and related dementias through legislative action. As advocates, we have strength in numbers.

Since devoting my time to advocacy, it has given me a renewed purpose in life.

My hope for the future of Alzheimer’s and other dementias is that this disease will get the recognition that is necessary to find a treatment, and ultimately a cure. Although I know that I will not see the day when a cure is discovered, it is my hope that my grandchildren will know a world without Alzheimer’s and dementia. For us to reach this goal, we will have to work together.

Last week the Alzheimer’s Accountability Act was passed. Experts at the National Institutes of Health will now have an annual opportunity to provide Congress with budget recommendations reflecting the current state of Alzheimer’s research and emphasizing the most promising research opportunities.

Your voice is powerful and needed – and you don’t have to travel to Washington to have it heard. All it takes is a minute and a click of your mouse. Join me in asking Congress to fund the research necessary to reach the goal of the National Alzheimer’s Project Act to prevent and treat Alzheimer’s by 2025 by clicking here.

Thank you!

About the blog author: Terry is living with younger-onset dementia and is a proud member of the national Alzheimer’s Association Early-Stage Advisory Group. In 2013, Terry received the Inspiring Champions Award from the National Capital Area Chapter for her contributions to the local chapter. According to Terry, “A diagnosis of Alzheimer’s or other dementia is not the end of the journey.” Terry lives in Manassas, Virginia. She has three daughters and eight grandchildren.

 

Learn More:

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Become an Advocate
I Have Alzheimer’s Website
Find a Support Group
Alzheimer’s Association Early-Stage Advisory Group

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