May 032017
 

The Alzheimer’s Impact Movement, the Alzheimer’s Association and our nationwide network of dedicated advocates are celebrating breaking news from Washington – federal research funding for Alzheimer’s at the National Institutes of Health (NIH) has received a $400 million increase in the FY2017 budget.

We first shared with you the Senate Appropriations and House Appropriations Committee’s intent to once again pass an historic funding increase in the summer and today it was officially signed into law by the president. Today’s news would not be possible without the work of AIM, the Alzheimer’s Association and our advocates. Since last year, we have held thousands of meetings with members and their staff requesting they invest at least an additional $400 million in Alzheimer’s research funding.

Thanks to bipartisan leadership in Congress, today Alzheimer’s research has reached nearly $1.4 billion at the NIH. This bipartisan effort was spearheaded by Senate Appropriations Labor, Health and Human Services, Education and Related Agencies Subcommittee Chairman Roy Blunt (R-Mo.) and Ranking Member Patty Murray (D-Wash.), and by House Appropriations Labor, Health and Human Services, Education and Related Agencies Subcommittee Chairman Tom Cole (R-Okla.), and House Appropriations Committee Ranking Member Nita Lowey (D-N.Y.).

This marks the second consecutive year that Alzheimer’s research funding has been singled out for historic funding increases. Still, more work remains.

Today, Alzheimer’s costs the nation, $259 billion in 2017, with $175 billion coming in direct costs to Medicare and Medicaid. The Alzheimer’s Association estimates that by mid-century the cost of Alzheimer’s is projected to more than quadruple to $1.1 trillion. Yet, despite today’s funding increase, Alzheimer’s research funding at the NIH is still well below what is needed if researchers are to meet the primary goal of the national plan to find a method of treatment or prevention by 2025.

Demonstrating the urgency of this crisis, the NIH Professional Judgment Budget commissioned by Congress has already recommended a $414 million increase in spending on Alzheimer’s disease research for fiscal year 2018. The Alzheimer’s Association and AIM are already working to ensure that today’s increase is not the last. Just last month, a record-breaking 1,300 advocates from across the country came to Washington, D.C. for the Advocacy Forum and asked Congress to continue to act.

Please join us in thanking Congress for taking decisive action today and urge them to remain our partners in the fight to end Alzheimer’s.

About the Author: Robert Egge is the Alzheimer’s Association’s Chief Public Policy Officer and also serves as the Executive Director of the Alzheimer’s Impact Movement

Mar 152017
 

These days nearly every member of Congress is using Twitter, Facebook or Instagram on a regular basis. The era of congressional offices sending out press releases as the main way to convey the Member’s message is long gone. Now, both staff and members alike use social media to push information out immediately and interact with their constituents every single day. Because social media has become the main form of communication with most congressional offices, advocates have had to adapt the way they interact with Congress.

I’m proud to announce our newest way to engage with members of Congress, by using personalized videos. Advocates and the general public can visit alzimpact.org/engage and send a short, personalized video message directly to their members of Congress. The Alzheimer’s Impact Movement (AIM) is launching the video platform in conjunction with the 2017 Alzheimer’s Association Advocacy Forum. Advocates can use the tool to urge Congress to increase federal Alzheimer’s research funding and make fighting this disease a national priority. Please take a minute to send a video to your members of Congress and then share with your social networks.

Additionally, the Alzheimer’s Association is urging all of its advocates to help increase the impact of the 2017 Advocacy Forum by joining Thunderclap. More than 1,200 advocates will flood Capitol Hill on March 29 to ask Congress for increased research funding. Thunderclap allows all Alzheimer’s advocates who can’t attend the Forum a way to amplify our unified message through social networks like Twitter and Facebook.

With a new Congress and administration, Alzheimer’s advocates must increase awareness about this devastating disease and educate leaders about the Alzheimer’s crisis and our policy solutions. Please help the Alzheimer’s Association and AIM continue our momentum on Capitol Hill during this year’s Advocacy Forum and sign up for both alzimpact.org/engage and Thunderclap, and then share with your social networks.   

 

About the Author: John Funderburk is the Senior Director of Advocacy for the Alzheimer’s Association and Senior Field Director for the Alzheimer’s Impact Movement (AIM). John oversees the Association’s nationwide grassroots and grasstops federal and state advocacy programs and manages its national issue advocacy campaigns, along with working to build AIM’s membership base. 

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Feb 162017
 

I am a hospice and palliative care nursing assistant for people living with Alzheimer’s disease.

I have experienced countless moments of bathing and toileting people who have forgotten what toilet paper is, and countless minutes flipping through photo albums pointing out family members, picture by picture. Most importantly, I have countless special memories of holding someone’s hand as death washes over and a sort of freedom sets in.

I have been someone’s doctor, someone’s granddaughter and just about anyone other than me because the Alzheimer’s tells the person with the disease otherwise. This is why I chose to advocate. I am more than a hospice and palliative care nurse assistant. I am a voice.

There’s something special about being a voice with the Alzheimer’s Association. The passion that flows within the physical walls of the organization and its people is rejuvenating; there is an overwhelming sense of pride in knowing that you’re a part of something that really matters.

The Making of an Advocate

I had been actively volunteering at local Alzheimer’s Association events when the volunteer coordinator suggested I look into a new group called the Young Advocates. Despite the fact that I had no clue what advocacy was, I decided to attend a meeting.

At the time, I knew nothing about politics. I couldn’t tell you how a bill becomes a law, how many districts were in my state of Georgia, or who my legislators were. I didn’t know what the impact of public policy was for those living with Alzheimer’s. I just knew my personal connection to the disease drove my passion. Along the way, I have learned that that’s enough. I felt the importance of the group at that first meeting, and ended up leading the group with another attendee.

A little over two years ago we were a group of five. Today the Alzheimer’s Association Georgia Chapter Young Advocates Group consists of 25 young adults that are passionate about Alzheimer’s advocacy. Together we learn how to make the needs of a community a part of legislation. We’re learning how to better use our voices, and as we grow in numbers, we grow in wisdom and perspective.

I’ve had the pleasure of advocating at both the state and federal level. We work throughout the year, holding meetings at our representative’s local office as well as traveling annually to the annual Advocacy Forum in Washington, D.C.

This spring, I’ll be heading back to Washington, D.C., with fellow advocates for the Alzheimer’s Association Advocacy Forum. I’m not sure I can conceptualize all of the magic that happens at this annual event. From the opening roll call of the states to the national dinner, state caucus training sessions and the last day where over 1,500 advocates from across the country march to Capitol Hill in our purple sashes, sharing our stories and our vision for change, it’s beyond moving.

As a young Alzheimer’s advocate, Forum is a chance to discuss my own vision and learn about the policies other advocates are implementing in their states. It’s also an opportunity to connect with other members of the Alzheimer’s Impact Movement, the nonpartisan sister organization of the Alzheimer’s Association that is working to make Alzheimer’s a national priority.

I know that the biggest impact is made when we all come together to share in fight to end Alzheimer’s. It’s like Mother Teresa said: “I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” I alone may never see the end of Alzheimer’s disease, but together we can create ripples that will eventually lead to a world without this disease.

Every time I am with other Alzheimer’s advocates or meeting with my elected officials, I am ignited and inspired. It’s as if ending Alzheimer’s is not only possible, it’s inevitable! As advocates for the Alzheimer’s Association, we are making change happen. Each change to legislation is a win. It’s a moment where we have honored those we’re advocating for. It’s a life we’ve changed for the better. It’s one step closer to ending Alzheimer’s disease – and it’s our voices that are helping make it happen.

About the Author: Native to Atlanta, Georgia, Sarah Collett is currently pursuing her master’s degree in social work with a graduate certificate in gerontology at Georgia State University. Sarah enjoys music, reading, community organizing and serving as a volunteer advocate for the Alzheimer’s Association. 

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Oct 072016
 

“We have a great opportunity,” said Ruth Gay, our chapter’s chief public policy officer, reaching me at San Francisco International Airport early on September 29 as I was about to board a flight to New York.  “It’s a real long shot,” she explained, “but as an AIM member and volunteer advocate, would you like an opportunity to ask a question about Alzheimer’s disease at the next presidential debate?”

“Absolutely!” I replied, “What do you need me to do and when?”

“Can you possibly get something posted in the next 30 minutes?” Ruth said. “I’ll send you some ideas and a link to the Open Debate Coalition website.”

Standing in line, juggling my luggage, I managed to type this question into my mobile phone, editing on the fly to comply with the 80-character limit:  What’s your plan to tackle the large public health crisis:  Alzheimer’s disease? As a supporting statement, which couldn’t exceed 200 characters, I wrote: An estimated 5.4 million Americans are living with Alzheimer’s disease.  Our nation’s most expensive disease, it is the leading cause of death in US without any known prevention, treatments or cure. 

I pressed send, confirmed the posting and tweeted a link just before boarding. By the time my plane landed, we were at 1,500 votes. I emailed our Chapter Board and staff, asking them to vote and activate their networks. And then my focus turned to spending three wonderful days in New York.

But early Sunday morning, October 2, I received an email from the Open Debate Coalition, advising that our question was now in the top 50 and asking:

  1. Would I be willing to talk to a reporter about the Open Debate process, the content of my question, and my personal connection to it?
  1. Would I send a simple video, shot from my phone, of me asking the question for “the candidates — and America! — to see the actual people who asked these questions”?
  1. If the opportunity presented itself would I be willing to attend in person?

I immediately answered yes to all the above, and forwarded the video (shot by my husband) to the Coalition.

In the meantime, the Alzheimer’s Association legislative advocacy team and Alzheimer’s Impact Movement (AIM) staff started engaging social media to mobilize our advocates across the country. Our question began rising in the rankings: number 33 out of 9,000 by October 4 in the morning, number 30 by midday. The e-News alert went out on October 5 and we received more than 500 votes in less than 20 minutes. Our question jumped to number 23, and by late afternoon had reached number 15, now of more than 10,000 questions. When we awoke on Thursday, October 6, our question was in the top 10, and had climbed to number nine out of 12,000 questions by the end of the day.

It was a giddy feeling — to think we’d have the chance to reach more than 80 million people about the need to end Alzheimer’s disease!  My mobile phone was at my side every moment, just to be sure I didn’t miss a call from the Coalition.

By Friday morning, with the debate less than three days away, our question had slipped a bit in the rankings but is still growing in support. Organizers have said the Top 30 will be considered and with some questions on duplicate topics, I’m still feeling optimistic about our chances. And I’m not done growing support for our question as we head into the final days of voting.

On Sunday night, I’ll join tens of millions of Americans watching the debate. Of course I’m hoping our question will be included, or at least that the candidates will mention Alzheimer’s disease on their own initiative, now that so many people have shown how much they care about this issue. But regardless of the outcome, it’s been exciting to see our network of advocates mobilize around this special opportunity to raise Alzheimer’s awareness. Many thanks to everyone who voted for our question and spread the word. It gives me even more confidence that together we will end Alzheimer’s!img_1798

To vote for Karen’s question, please visit: bit.ly/Ask4ALZ

About the Author: Karen Stevenson is the board chair of the Northern California & Northern Nevada chapter of the Alzheimer’s Association.

 

Aug 232016
 

This summer has been filled with positive advancements towards increased federal Alzheimer’s research funding in the House and the Senate for FY17. And, in August, Alzheimer’s champions received another reason to celebrate when the National Institutes of Health (NIH) recommended a $414 million increase in spending on Alzheimer’s disease research above NIH’s base appropriation for Fiscal Year 2018. Were this provided next year on top of what Congress is on track to provide this year, that increase would bring overall Alzheimer’s research at NIH to $1.8 billion per year, quadruple what it was just a few years ago.

This recommendation came during the National Alzheimer’s Project Act (NAPA) Advisory Council meeting when the second-ever professional judgment budget for Alzheimer’s research was released. To date, only two other diseases have received NIH professional judgment budgets: cancer and HIV/AIDS. This recommendation continues to lay the groundwork for the next step toward meeting the lead goal in the National Plan to Address Alzheimer’s Disease to prevent and effectively treat Alzheimer’s disease by 2025.2016-pjb-infographic-2-page-001

NIH laid out the research milestones it expects to meet if Congress provides the increase called for in this professional judgment budget, also called a bypass budget. These milestones include new insight into the disease mechanisms, identifying pharmacological and non-pharmacological ways to treat Alzheimer’s, creating more effective methods of research, and performing trials to enhance caregiving and support for caregivers, among many other areas of research. With steady, appropriate funding increases, the future is promising for Alzheimer’s research.

The announcement by NIH comes on the heels of the U.S. House and Senate appropriations committees approving increases that could be as high as $400 million for FY2017.

In issuing the FY2018 Alzheimer’s research bypass budget, NIH noted that Alzheimer’s disease represents a huge financial burden on taxpayers both nationally and individually. The Alzheimer’s Association 2016 Alzheimer’s Disease Facts and Figures report showed that Alzheimer’s and other dementia related care costs are expected to rise from $236 billion in 2016 to over $1 trillion in 2050 (in 2016 dollars).

The NIH decision and recent actions in Congress are the latest signs that the work of the Alzheimer’s Association, the Alzheimer’s Impact Movement, and our relentless advocates are being heard in Washington. Working together we will create a world without Alzheimer’s.

About the Author: Robert Egge is the Alzheimer’s Association’s Chief Public Policy Officer and also serves as the Executive Director of the Alzheimer’s Impact Movement

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Aug 232016
 

This is the final piece of a three part series on the need to act decisively to address the Alzheimer’s crisis. Part one reviewed the fiscal imperative to address the Alzheimer’s crisis, while part two addressed the research needs and opportunities.

THE PEOPLE’S IMPERATIVE

The public is increasingly aware of the need for action. A nationwide survey the Alzheimer’s Association fielded in 2015 found that voters view Alzheimer’s disease as a significant priority. The survey found:

  • 73 million voters have had a family member or close friend with Alzheimer’s disease.
  • More than one-third, or 52 million American voters, have provided care or personal assistance to a relative, friend or neighbor with Alzheimer’s.
  • 82 percent of voters nationwide are concerned about Alzheimer’s disease.
  • 87 percent of voters feel unprepared or only somewhat prepared to meet care needs of a family member who develops Alzheimer’s disease.
  • The majority, 64 percent, of voters would be more likely to vote for a presidential candidate who has pledged to support a major national research effort to fight Alzheimer’s.Alzheimers Grassroot Mailer Iowa

Millions of American voters have had personal experience with Alzheimer’s disease and understand the dramatic toll the disease takes on families across the country. It is unsurprising that presidential and congressional candidates on both sides of the aisle have been discussing the Alzheimer’s crisis while campaigning.

Constituents want Washington to address this mounting health crisis by advancing research and increasing support for caregivers. This year, Alzheimer’s Association advocates are pressing for a $400 million increase in Alzheimer’s research at the NIH in order to achieve the breakthroughs needed to develop preventions and effective treatments by 2025 — the goal established in the National Alzheimer’s Plan.

Issues important to constituents can be controversial, but urgently addressing Alzheimer’s is not. Prioritizing Alzheimer’s disease research funding is smart politics for a very important reason: Americans understand it is the only way to change the deadly and expensive trajectory that is bearing down on so many American families.

This challenge unites Washington, just like the country as a whole. It is time to act.

 

About the Author: Robert Egge is the Alzheimer’s Association’s Chief Public Policy Officer and also serves as the Executive Director of the Alzheimer’s Impact Movement

This post originally appeared on www.alzimpact.org.

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Aug 222016
 

This is part two of a three-part series on the need to act decisively to address the Alzheimer’s crisis. Part one reviewed the fiscal imperative to address the Alzheimer’s crisis, while part three reveals public opinion on the need for government to act.

The Research Imperative

The federal government has taken several important steps in recent years to address this looming crisis. The National Alzheimer’s Project Act (NAPA), passed unanimously by Congress in December 2010 and signed into law by President Barack Obama in January 2011, mandated a national strategic plan to address the crisis and coordinate Alzheimer’s disease efforts across the federal government. First released in 2012, the National Plan to Address Alzheimer’s Disease set a clear goal: “prevent and effectively treat Alzheimer’s disease by 2025.”

There’s only one way to meet the 2025 goal: research, research and more research.

Courtesy: NIH

Courtesy: NIH

Promising research is both underway and ready for the pipeline. During the past decade, researchers have significantly advanced our understanding of how a healthy brain works and what happens to the brain of a person living with Alzheimer’s disease. Many of the new drugs in development aim to modify the disease process itself by targeting those brain changes.

This is in part why prominent scientists believe the national plan is attainable if we accelerate funding. Encouragingly, Congress has begun to heed the message:

  • The omnibus spending bill for Fiscal Year 2015 included the Alzheimer’s Accountability Act, which requires the National Institutes of Health (NIH) to develop a professional judgment budget to execute the milestones established by NAPA. This will advise Congress on what NIH believes is needed to reach the goal of effectively treating and preventing Alzheimer’s disease by 2025. Only cancer and HIV/AIDS have been previously designated for this special budget development aimed at speeding discovery.
  • In December of 2015, Congress passed and the president signed an omnibus spending bill that included a $350 million increase for Alzheimer’s disease research at NIH. This is the largest annual increase ever in federal Alzheimer’s research funding — a nearly 60 percent increase that brings the total spending for research investigating Alzheimer’s disease and other dementias to nearly $1 billion per year.

Despite this progress, we must reach higher. In 2013, the Advisory Council on Alzheimer’s Research, Care and Services, which advises the Secretary of Health and Human Services, recommended investing at least $2 billion a year in research to meet the 2025 goal, as advised by scientists convened by NIH.

 

About the Author: Robert Egge is the Alzheimer’s Association’s Chief Public Policy Officer and also serves as the Executive Director of the Alzheimer’s Impact Movement

This post originally appeared on www.alzimpact.org.

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Aug 092016
 

This is part one of a three-part series on the need to act decisively to address the Alzheimer’s crisis. Part two addresses the research needs and opportunities. Part three reveals public opinion on the need for government to act.

In the three seconds it takes you to read this sentence, taxpayers will have spent more than $15,000 on Alzheimer’s disease and other dementias. Within the hour, the cost will reach $18.3 million.

Our nation’s entitlement programs are coming under increasing strain as the cost of Alzheimer’s and other dementias are poised to cost Medicare and Medicaid $160 billion this year alone. At this moment, more than five million people are living with the disease, and, without medical breakthroughs, by 2050 that statistic may be as high as 16 million people at a cost of $1.1 trillion per year to Medicare and Medicaid.

The baby-boom generation is on track to become Generation Alzheimer’s, as more than 28 million of them are expected to develop the disease.

Alzheimer’s, the most common cause of dementia, is a progressive brain disorder that damages and eventually destroys brain cells, leading to loss of memory, thinking capacity and other brain functions. Over time, those with the disease become entirely dependent on others for all activities of daily living. Those with severe or late stage Alzheimer’s eventually lose their ability to eat, bathe and manage their own bodily functions. It is a devastating disease for those living with it and for their families who watch their loved ones slip away. Ultimately, Alzheimer’s is always fatal. We cannot yet celebrate a single Alzheimer’s survivor.ALZ-18.3M-01

What’s more, there are no available therapies to address the underlying cause of Alzheimer’s, making it the only disease among the top 10 causes of death in the United States that cannot be prevented, cured or even slowed. With its soaring prevalence, lack of effective treatment and skyrocketing costs, Alzheimer’s disease is a crippling triple threat unlike any other disease.

In just a few decades Alzheimer’s has reached epidemic proportions, while the federal research funding necessary to better understand and eliminate the disease has been insufficient to meet scientific recommendations. A few months ago, however, Congress took an important step with the largest-ever federal funding increase for Alzheimer’s disease research, which now totals nearly $1 billion per year. While this is a promising step in the journey to end this epidemic, the nation’s top scientists and researchers have told Congress that research funding must be brought up to at least $2 billion per year — a level comparable to that for other major diseases — if Congress intends to make adequate progress against this disease in time to be relevant for most Baby Boomers.

The Fiscal Imperative

Already America’s most expensive disease with an estimated cost of care at $236 billion a year, excluding unpaid family caregiving, the cost to our nation will only continue to grow as our nation’s population ages.

  • Today, an estimated 5.4 million Americans have Alzheimer’s disease, including approximately 200,000 under the age of 65. One in nine people age 65 and older have Alzheimer’s, and one in three seniors dies with Alzheimer’s or another dementia.
  • Increasing age is the greatest risk factor for Alzheimer’s, and the U.S. population is aging. As baby boomers reach the age of greater risk of developing Alzheimer’s, it can be expected that — barring a treatment or breakthrough — millions of them will spend their retirement years either living with Alzheimer’s or caring for someone who has it.
  • And while the medical community is working hard to find treatments, today the five drugs approved by the U.S. Food and Drug Administration to treat Alzheimer’s only temporarily help memory and thinking problems in about half of the people who take them. The medications do not treat the underlying causes of Alzheimer’s.
  • Alzheimer’s makes treating patients with multiple diseases more expensive, and most individuals with Alzheimer’s typically suffer from more than one chronic condition. For example, a patient with diabetes and Alzheimer’s costs Medicare 81 percent more than a patient who only has diabetes, according to our analysis of Medicare claims data.

This is a disastrous formula for Medicare. Today, Medicare already spends one dollar of every five on care for beneficiaries with Alzheimer’s or another dementia. By 2050, that will increase to one dollar of every three. And, in 2050 Medicare spending just on people with Alzheimer’s disease will be almost as much as the total defense budget is today.

About the Author: Robert Egge is the Alzheimer’s Association’s Chief Public Policy Officer and also serves as the Executive Director of the Alzheimer’s Impact Movement

This post originally appeared on www.alzimpact.org.

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Mar 252016
 

Brenda Bouchard is certainly qualified to advocate on behalf of people affected by Alzheimer’s. The 58-year-old New Hampshire resident serves as a full-time caregiver for her mother with the disease, as well as for her husband, Ken, 69, who has younger-onset Alzheimer’s.

My husband was just 59 years old when our journey began.

bbouchardHe, like his grandfather, mother, seven aunts and uncles and two older brothers before him was diagnosed with Alzheimer’s disease. That was 10 years ago. My 89-year-old mother lives with us; four years ago, she was diagnosed with mild cognitive impairment. People with mild cognitive impairment have an increased risk of developing Alzheimer’s or another dementia, and that’s exactly what happened to my mother.

Alzheimer’s has devastated our family. What was once normal for our family is no more. We’re missing an important link. Our lives are forever changed. Throughout the Alzheimer’s journey, everyone walks his or her own path. Life is ever changing in ways we never could have imagined — and not for the better. Alzheimer’s is a disease of behavior. With each change in behavior, people with the disease and caregivers alike stand on shifting sand. The ground beneath our feet is never solid. It’s always moving.

The most difficult aspect of this experience is the loss of my husband and my mother.

Their bodies and spirits are here, but their minds have been altered and the precious gift that was their memory is gone. It’s a slow, agonizing loss and very, very difficult for them to cope with and extremely painful for us to watch.

In the early stage of the disease, it was very difficult to look at Ken and know he was a prisoner in his brain. He was aware of what was happening. He knew he was losing his mind and would continue to do so — he knew what was to come.  Through the middle stage, it was heartbreaking to be a helpless bystander as Ken lost his ability to drive and participate in all of the hobbies he loved so very much. He lost his independence. And then there was the sinking feeling as we stood by and watched him struggle to comprehend why he could no longer independently do so many of the things he loved, and there wasn’t a thing we could do to stop the march of Alzheimer’s or assuage the emotional pain he was enduring.

Ken is now in late stage. We’re very fortunate as Ken has great care and a lot of love surrounding him. He’s extremely happy in his new world, but I often wonder what the Ken of 10 years or more ago would think of his life today now that he can no longer take care of himself in any way. It’s heartbreaking to contemplate.

As I watched the grueling losses and changes this disease was wreaking on him and our family, I recognized I didn’t want to sit idly by and do nothing.

We were very private people, and when my husband was diagnosed, he wasn’t comfortable sharing his diagnosis. It was a very big decision to speak out publicly about Ken’s diagnosis because at the outset I felt I was betraying him. Initially, I didn’t realize that by speaking out, even in small ways, I was honoring Ken’s life and the person he was and also giving a voice to many people who are in the same situation and yet unable to speak out.

I never thought I would become an Alzheimer’s advocate, but out of all this loss and horror, I feel I’m joining voices with other advocates to make a difference. And we are making a difference. Every time we speak up and speak out, we’re changing the culture and climate around Alzheimer’s. We’re collectively making a difference in Washington by making them aware that we’re here and we’re not going to stop speaking up and speaking out until Alzheimer’s gets the attention it so greatly needs and deserves.


I started advocating when our local chapter of the Alzheimer’s Association asked me to come to our state capitol to testify on a bill that would put a plan in place for Alzheimer’s and related dementias in our state.

At that time, New Hampshire was one of only 13 states without a plan. I made three trips to Concord to testify on that bill over the course of a year-and-a-half. It was signed into law in August of 2014. It was an extremely satisfying experience to realize that by sharing our story I may have contributed to making a difference for people who are just starting their journey.

A local videographer made a short film about our journey titled “Honoring Ken.” Our film has been viewed more 30,000 times and has made its way around the world to England, Pakistan, Australia and beyond. I also started a YouTube channel and a Facebook page spotlighting our advocacy work and everyone else who has traveled or will travel this path.

This past summer, I met with one of our representatives and a representative from one of our senator’s offices in New Hampshire to discuss Alzheimer’s.

I’m very excited to attend the Advocacy Forum. Having done some advocacy work in my home state, I’m now anxious to advocate in Washington. I’m  looking forward to meeting with elected officials and sharing my story and the heartbreaking stories of so many people I’ve met. I’m also very excited to meet other advocates, hear their stories of advocacy, learn from them, share my personal lessons learned and continue to be inspired.

I believe I’ve been, and continue to be, one spoke in the wheel of Alzheimer’s advocacy. We’re all working together to be heard, make a difference and make change. I feel, sense and believe we’re doing just that.

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Sep 162015
 

Seattle Seahawks’ J.R. Sweezy is not the tough offensive guard most people know when he’s around his wife Gissell. “She’s everything I ever wanted. I became so much happier when she came into my life. She’s my support system,” he says, lowering his gaze shyly, petting their black Labrador Otis.

Gissell laughs, returning his smile. “There’s that soft side of him that people don’t see,” Gissell says. “I think everyone sees him as just a football player. Not me. That’s just what he does for a living.”

J.R. and Gissell met in sixth grade after she and her family moved to Mooresville, North Carolina. “We were in homeroom together,” said Gissell. “We would laugh and talk, and we became friends.”

Although Gissell wasn’t in the same popular crowd as J.R. in high school, they continued their friendship and attended senior prom together. “We dated and broke up three times from high school into college,” said Gissell. “I was done after the last one,” she said, as she shook her head laughing.

Gissell attended Peace College while J.R. attended NC State University to play football, following his paternal grandfather Roger’s footsteps. “It took time for me to grow up and realize how special she is,” said J.R.

They led separate lives for five years until running into each other at Duckworth’s Grill while visiting family. “We talked for a month after that and then were back together,” said Gissell. “I felt peace. When we’re together everything makes sense.”

J.R. nodded his head with assurance. “We make each other better.”seahawks

Soon after getting back together, J.R. was drafted and selected by the Seattle Seahawks.

“Football is something I’ve always loved, and I’m blessed enough to do it,” said J.R. “We’ve won a lot of games because of our fans, the 12s. It’s the only place like that in the entire NFL, and I’m lucky enough to call it home,” he said about Century Link Field.

“I love it. I get goose bumps just thinking about running out of that tunnel. The 12s are so loud; they’re great fans—they set the mood and keep us going.”

J.R. believes the 12s will also support him in raising awareness about Alzheimer’s disease. “They go above and beyond, and I think they’re doing that outside of football too.”

J.R.’s Papaw Gene, a successful businessman, was diagnosed with Alzheimer’s disease nine years ago. After seeing his maternal grandfather’s drastic decline last April, J.R. and Gissell decided to create #the12s Walk to End Alzheimer’s team to raise awareness nationally for Alzheimer’s disease.

“If we are raising money and have the right people researching and understanding it, maybe we will find a cure one day,” said J.R. “I want to raise awareness from coast to coast. We’re helping now for the future. It’s too late for Papaw Gene, but not for our kids.”

J.R. only gets to visit his papaw two or three times per year, but even now in the late stages of Alzheimer’s disease, Papaw Gene will sometimes ask, “Is that the boy that plays football?” and reach for his Seahawks hat.

Both of J.R.’s grandfathers were prominent role models in his life. His Grandpa Roger not only played football, but exemplified hard work and taught J.R. “not to doubt myself, to do what is right and to be my own man. He told me that ‘til the day he died,” said J.R.

They were successful men who led by example. “I’ve learned never to take a day for granted. God’s the only one who knows the in-story.” said J.R. “Just like in football, we can’t take a day for granted, because it could all end in one moment.”

Although J.R. was at the Seahawks’ hotel in La Jolla, California preparing for their third exhibition game on the afternoon of August 29, Gissell was at Seattle University Park with her mother-in-law, grandmother-in-law and other Seahawks’ wives and girlfriends representing #the12s team and raising awareness about Alzheimer’s disease.

“We’re soul mates living the dream,” said Gissell. “Every day he works to be a better man—in football and in our personal lives. I’ll do anything for him because he’s the love of my life.”

To read more blogs from the Alzheimer’s Association, Washington State Chapter, please visit this link.

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