Jun 212013
 

My mom, whom we lovingly call LuLu, was diagnosed with Alzheimer’s in 2008. We have been through quite the journey ever since.  There have been challenging and scary times when we didn’t know what might lie ahead, and there have also been incredibly inspiring times, when we’ve been touched by others who readily jump in to help based on their own experiences with Alzheimer’s. purple sunset

When I heard about The Longest Day, a 16-hour Alzheimer’s Association event, I thought it was such a unique way to recognize the millions of people who face Alzheimer’s every hour of every day, and to raise money for such a great cause.  I decided to sign up and ask a few family and friends to join if they could, but I fully expected to cover the majority of the day on my own given that it is on Friday and most people are working.

I was so overwhelmed when the responses came back immediately.  “I’m in!” —one person after another.  Before I knew it, we had all 16 hours of the longest day of the year completely scheduled with activities in LuLu’s honor.

Love of Lulu 1

I could hardly sleep last night—I was so excited for today to get here! Our team, “For the Love of LuLu,” passed a “virtual baton” across multiple states. My college roommate Jenny started us off at 5:30 a.m. (bless her heart) doing aerobics in Chicago.  Then, my sister-in-law Terri walked her dogs in New Hampshire.  Next, I walked my dogs in Aurora.  LuLu LOVES dogs so we had several dog activities throughout the day!

My nephews Tyler and Mike both fished (in separate states), my sister-in-law Sue knitted in Michigan, and more folks walked in Texas and Illinois—including my cousin Lynda who gave LuLu her nickname when we were children!  My husband Tom and stepson Corey played/watched baseball, which is one of LuLu’s favorite sports since she supported all three of my brothers through their baseball years.

One of the most anticipated activities was performed by my friend Tami, who dressed up in a cowboy hat and line danced to John Denver, LuLu’s favorite musical artist.  :)

We’ve raised $3,550 so far and we aren’t stopping there!  One of our most memorable donations was from the kids in student council at the school where my sister-in-law Lynn teaches.  They held a talent show to raise money for Alzheimer’s and donated all proceeds to our team.  We affectionately now call them our “Little LuLus.”

Now, as the sun sets, we are hosting “The Longest Party” and serving several of LuLu’s famous dishes – cucumber sandwiches, deviled eggs and kolaczki cookies.  As we reflect on the day, we are inspired by how many people have come together in Lulu’s honor.  She is my hero, and I will continue to work to end Alzheimer’s until there is a day when no daughter has to watch her mother live with this disease.

Diane Leeming is the youngest of five children. Diane, her husband Tom, her stepson Corey, and their two dogs live in the Chicagoland area.  Diane works in Human Resources and is currently Senior Director of Organization Effectiveness for Kraft Foods Group.  She and her family and friends are participating in the Alzheimer’s Association The Longest Day™ , a sunrise-to-sunset relay to raise awareness and funds for the fight against Alzheimer’s. 

Jun 212013
 

the longest day, ACBLMy daughter and I experienced the longest goodbye during my husband’s decade-long struggle with Alzheimer’s dementia. Henry died in March of this year.

Henry taught me to play bridge more than 30 years ago when we were courting. My daughter, as a little girl, learned how to play the game while sitting on his knee.  Playing bridge became a tradition with my family as we played weekly with friends, and whenever we went to California to visit Henry’s mother (also a very fine bridge player).

All day today, people across the country are doing the things they love as part of The Longest Day, an Alzheimer’s Association event to raise funds and awareness.  Some will participate by hiking, cycling, swimming, sailing, bowling, dancing, painting, running, skateboarding or rock climbing. We are playing bridge.  The Longest Day gives my daughter Kristen and me a chance to honor his memory in a very tangible way.  I am very grateful that Donna Compton, the owner of our bridge club in Dallas, chose to participate in this very special day.

Henry was a brilliant scientist, unfailingly kind and interested in making a difference in the world and in people’s lives.  He was diagnosed with posterior cortical atrophy, a variant of Alzheimer’s, in 2006; but continued working until May of 2009, when he retired after 31 years with the United States Environmental Protection Agency—determined to continue living according to his goals instead of giving in to depression or desperation.  He and my daughter stayed active in the community, especially with the YMCA for which they both raised thousands of dollars each year during the Y’s scholarship fund drive. Before he passed away, Henry made the decision to donate his body to the University of Texas Southwestern Medical Center Memory Research Unit.   Until the very end, he was committed to doing what he could to make a difference.

Participating in The Longest Day allows me to be part of a movement and most importantly, carry on my husband’s legacy for the study and eventual eradication of this dreadful disease.  My involvement in this event has given me a new perspective on everything we’ve gone through over the last few years. As I play bridge, I will reflect upon the truly blessed life we had and the nobility with which my dear husband faced his inevitable decline.

I feel as if I owe my service to Henry, to my community and to all of those suffering with Alzheimer’s disease as well as their loved ones.  Seeing our community and others come together shows me that this disease affects everyone in some way.  Sharing our stories, journeys and supporting one another has been an incredible experience. I can only hope that what we do today, in this unified effort, will truly have a lasting impact for the Alzheimer’s Association and the fight to find a cure for this devastating disease.

About the Blog Author: Laura Onsgard lives in Dallas, Texas.  She is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event to raise funds and awareness for Alzheimer’s care, support and research.

Jun 212013
 

Jenny PToday is all about motion.  There has already been hiking – and there will be boating, golfing and biking.  Together with my sister and two wonderful friends, I am participating in Alzheimer’s Association The Longest Day, which involves 16-hours of activity to honor those with Alzheimer’s and their caregivers.

My father was diagnosed with early-onset (also called younger-onset) Alzheimer’s late last year. There is a hereditary mutated gene that runs in our family that has also affected my dad’s father and his sister.  The grandfather of my teammates, Alissa and Erica, also has Alzheimer’s.

The four of us decided to form team “Fighting to Remember” and join The Longest Day to honor these two amazing men.

Fighting to Remember Longest Day Team Alzheimer's Charity

Hiking at sunrise, boating until sunset

At sunrise, the team began hiking because my dad loves to walk in the woods. (He is a great morel mushroom hunter!)

Now, I’m getting ready to undock the pontoon on Lake Wisconsin. We plan to boat for a while and park at the sandbars to play cards. My dad has spent his whole life fishing and he loves playing cards. The same is true for our friends’ grandfather, who grew up in Chicago and moved to his house on Lake Wisconsin 35 years ago.

Tonight, we will dock the boat and have a huge celebration with our families, grilling a pork shoulder and talking about our successful day. We are so honored to be a part of this event and are amazed at the number of people who have come forward to share their stories and struggles with Alzheimer’s.


Reflections on the water

I am grateful to have such a strong dad. He has known that Alzheimer’s disease would likely affect him due to the hereditary mutated gene and has lived his life to the fullest because of it.

We are making plans to travel over the next year so we can continue to make memories while he is strong enough to do it. Unlike most people my age (I’m 33), I choose to live with my parents, along with my 2-year-old daughter, Lauren. This way, we can help my dad and continue to make memories.

I am so grateful for my wonderful family. My sister, Rochelle, is right down the street. Almost every night we get together as a family. I’m also so glad I can help my mom with emotional support during this time. We are best friends, and I love living with them.

Committed to fighting Alzheimer’s beyond June 21

Our team has raised more than $7,200, but our efforts will not end here. We will continue raising awareness beyond today. We are in it until Alzheimer’s is just a distant memory.

About the blog author: Jenny Peterson’s father was diagnosed with younger-onset Alzheimer’s. She is helping to raise awareness and funds with team Fighting to Remember in the Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event to honor those living with Alzheimer’s disease and their caregivers

Jun 212013
 

toddpI’m an actor from San Francisco who came home for Christmas and stayed.  My Mom is in Stage 4 of Alzheimer’s. My Dad is in denial, but he is getting better.

I went to the Alzheimer’s Association and they gave me lots of support, ideas and the skills to move ahead.  They also asked me to do The Longest Day, a 16-hour event to raise funds for Alzheimer’s support, care and research.

I chose theatre.  What was I thinking????

I was worried about my choice, but then I watched “Madagascar 3.” That’s right.  You heard me.  “Madagascar 3.” And I got all teary and emotional…but not when you would expect. It happened when they PUT ON A SHOW in a crazy, grandiose Cirque d’ Soleil way. I wept…..openly. And then I knew I had made the right choice.
directors_chair
So, at 5 a.m. this morning, I got up to prepare for the day of theatre ahead of me.

Thank goodness my pal Ian Smith in the United Kingdom did a comedy radio show in the wee hours. But, now it’s my turn. I’ve got to get down to the Mill Coffee Shop in the Haymarket of Lincoln, Nebraska, to meet my co-hostess Jessica West Bower for our morning talk show “Mornings Are a Drag.”  Drag Queens are always late so I might be vamping a bit there.  Then off to the Tada Theatre across the way for a day of show tunes and Chopin, sonnets, soliloquies and schtick.   I have all ages signed up to perform for 16 hours and it will be open to the public. It is going to be an amazing day of making memories – memories that seem more important than ever before.

One of my friends, Brendan Kelly, who is a fellow actor, stated in his donation comment box, “In support of live theatre everywhere and the healing the arts provide.”  And that is why I am doing this:  My mom gave me the support when I boldly stated I wanted to be an actor ,and it’s only fair I give back. The thought of keeping someone and their family from going through this would bring me so much joy and what better way to celebrate than by doing what has always given me the greatest joy in my life—performing.

About the blog author: Todd Pickering is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 21, 2013, to raise awareness and funds for Alzheimer’s care, support and research. 

Jun 202013
 

TLD_Homepage_BlogFeature_Bernie (1)The porters pack my tent and soon there is a line of headlamps ahead, trailing the lead guide. It will be an extraordinarily long night.  One that I am embarking upon as part of The Longest Day, an Alzheimer’s Association event that involves thousands of participants throughout the world who are passionate about finding a cure for Alzheimer’s and providing assistance to all those who have this illness.

Family heartbreak inspires action
As a boy, I overheard stories of how Grandmom was placed in an asylum because Grandpa couldn’t take care of her. She would wander away (sometimes in the middle of the night, sometimes with few clothes) down the street, challenging every compassionate act provided by Grandpa.

Many years later, the symptoms of this merciless disease became evident as my mother would demonstrate unusual behavior, make strange comments, and frighten us with her driving, lack of personal hygiene, financial mismanagement and delusions. The remaining family wrestled with how to keep mom safe in her own home, providing her with ready cooked meals, access to emergency care, therapeutic help and community services. Yet, in the back of our minds and contrary to the hope in our heart, we knew we were losing. Mom was eventually placed in an assisted living after we tried keeping her in our homes. The house was sold and finances ran low.

As I looked into her far away eyes, sensing the heaviness of my own, I was struck by her willingness to be lead anywhere in a simple, child-like manner. Trusting everyone, believing anything, this child-mother of mine seemed at peace in the face of not even recognizing who I am.

Reaching out and raising funds
During the course of my fundraising, I reached out to everyone I knew and could remember— high school classmates, military companions, colleagues from different careers, clients I work for, family, friends and total strangers.

I wore my The Longest Day t-shirt everywhere, encouraging conversation. I solicited help from family and friends, and promoted my goal in social media, the newspaper and at community colleges.  I told my story on a handout and on a donation form. I had handouts wherever I went. I even took time to sit in a shopping mall on a community services day.

Most importantly, I offered people a chance to honor and memorialize their loved ones by promising to take their name to the top of Mt. Kilimanjaro and leaving a steel tube that would last for eons on the top of the mountain.

At the top, honoring loved ones lost to Alzheimer’sSONY DSC
As I hike for the next seven hours towards the summit, I not only remember my mother and grandmother, but also the 47
other names I have printed on a scroll. I speak aloud their name and let the breeze carry it from the mountain top. I will be at the summit soon, and I will bury this scroll within a tube under some rocks in a hollow, out of sight. There it will stay for hundreds of years, in memory and honor of our loved ones, just that much closer to the heart and hands of God.

I love you, Mom.

About the blog author: Bernie Buckley  is coupling his interest of hiking with “doing something with a purpose.” His team “Climb 4 Alzheimer’s” honors his mom who had Alzheimer’s. He is trekking up Mt. Kilimanjaro, and his siblings are climbing mountains where they live. They are all helping to raise awareness and funds in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event to honor those living with Alzheimer’s disease and their caregivers.

Jun 132013
 

Christina and Giovanni It was a perfect summer evening.  The sun was just starting to go down and there wasn’t a cloud in the sky.  I was home from college on a visit to introduce my parents to my new boyfriend (my now husband).  We sat on our patio, enjoying our evening together.

My father, Giovanni, summoned me into the kitchen through the window overlooking the patio.  I excused myself, assuming he wanted some help in preparing the food and getting the table set for dinner.  While I was correct that my father needed some help in the kitchen, I was not prepared for the kind of help he was asking for.

My father, an Italian man and one of the best chefs I have ever known, was asking ME for help on how to cook his signature pasta dish that I had requested he make for this occasion.

I could see the sadness and sheer terror in his eyes that he was asking me for assistance on something he previously could do with his eyes closed.  Immediately, I sprang into action, telling him not to worry, assuring him that we all have days like this sometimes, and that it had been a long time since he had made the dish.  But deep down, I knew something was very wrong.  It wasn’t long after this occasion that my father was officially diagnosed with Alzheimer’s disease.

More than six years have passed since that summer night.  During that time, my father gradually forgot every pasta dish he ever made; he forgot the simple daily acts we take for granted; the disease robbed my father of knowing that I was his daughter — and finally, of his life.

Here is what my journey with my father taught me: Alzheimer’s changes things, but there is still a person inside.  Even after this disease progresses, there are ways to share meaningful moments.

A special recipe to share

Make a tax-deductable donation to The Alzheimer’s Association and receive a downloadable recipe card of Giovanni’s signature pasta dish as a thank you for your donation.

donate

One of my favorite memories of my father is of my wedding day.  It was toward the end of his illness, and he was having more bad days than good.  I wasn’t sure he would be able to attend. He was having trouble walking at that point. But he made it – and something amazing happened.  Not only did he walk – he lit up.  He was back to being an entertainer and a host and he loved every minute of it.  We danced to Sinatra’s “The Way You Look Tonight” and he looked so happy.  We both were.

As my father’s youngest and only child in the United States, I always tried to be strong for him, and support him in any way that I could. Our time together has inspired me and shaped the woman I’ve grown to be.  My father’s journey affected my career choice. I now work for the Alzheimer’s Association, providing education and guidance to other families trying to navigate this awful and often mysterious, challenging disease.

Now that my father has passed away, the greatest gift I can give him is doing my part to help end this disease for other families. I hope that my effort to help others, I honor my father, who was one of the most gentle, kind and caring people I have ever known.

Happy father’s day, Dad. I love you and miss you.

About the blog author:  Christina lives near Chicago with her husband, two dogs and a cat.  They are expecting their first child later this year.  She works at the Alzheimer’s Association helping other families dealing with dementia. 

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Apr 172013
 
The Longest Day: Fighting Alzheimer's

“This Is Our Life” is the final line of a production entitled “Resurrection” that my husband Steve and I have been a part of with our church singing group for the past 17 years. During the last song, everyone in the congregation holds a candle that is lit from a single candle that stands alone on the altar. As each candle is lit, we watch the church go from dark to light.

The first year we performed, a small group of us got together and pitched in—sewing costumes, rehearsing and doing whatever was necessary to make it happen.  Almost two decades later, there are more than 100 people in the  cast. The experience has taught us that when people come together, the illumination is very bright.

This summer, on June 21, my husband, our family, our friends, and community will stay in motion from sunrise to sunset as a way of showing our commitment to a day when Alzheimer’s is no more.  It’s part of The Longest Day, an all-day event to raise awareness and funds for Alzheimer’s care, support and research. We’ve named our team “This Is Our Life” because we believe—similar to watching the church go from dark to light during the performance —if we all work together, we can illuminate the darkness of Alzheimer’s.  The more people willing to tend to the light, to spread awareness about Alzheimer’s and to get involved, the closer we come to a time when Alzheimer’s doesn’t exist.

Alzheimer’s is no stranger to our family.  Last year, right before his 59th birthday, my husband Steve was diagnosed with early-stage, younger-onset Alzheimer’s.  Five years earlier, his mother was diagnosed with Alzheimer’s.

In a way, Steve’s diagnosis is a gift.  Because we have this knowledge, we don’t waste a minute.  We know this time is sacred.  Steve’s quality of life is good—and we are living every day.

Time to Make a Difference

After  receiving a diagnosis of Alzheimer’s, there is so much you feel like you can’t do. There currently aren’t treatments to stop this horrible disease. There is no cure. But Alzheimer's Charity Event: The Longest Daybeing part of The Longest Day is something we can do.  It is empowering to have this tangible event where we can take action.  And it’s action that really matters.The nearly $12,000 we raised last year helps support Alzheimer’s programs and care, and furthers the Alzheimer’s research going on throughout the world to try to find better treatment and a cure.

For us, the event is also about community. At the end of The Longest Day last year, we felt better about the future than we did at the beginning of that day. Every donation came with a note of support and love.  At sunset, 30 people gathered at our house for a celebration of all we accomplished. This year, we hope to have 50—or even 100.  When you bring people together, for important causes, unbelievable mountains can be moved—and our amazing community has shown us that they are here with us on this journey, that IS Our Life, until a day when Alzheimer’s is finished….or is just a memory!

Judy Johanson is care partner for her husband, Steve, who was diagnosed with younger-onset Alzheimer’s at age 59. Together with her family and friends, Judy is participating in Alzheimer’s Association The Longest Day®, a sunrise-to-sunset event on June 21, 2013, to raise awareness and funds for Alzheimer’s care, support and research. 

Aug 302012
 
Rob Epp is a full-time Alzheimer's caregiver for his partner Jordan.

Courage is the thing you need most and the hardest thing to get when you’re faced with Alzheimer’s Disease.

Jordan, my partner of 17 years has younger-onset Alzheimer’s. His father and several grandparents had memory problems, so the diagnosis was not totally unexpected, but it is still hard to grasp that someone so young and vital is facing such a ravaging illness.

Since Jordan’s diagnosis four years ago, we’ve both experienced the stigma that is attached to this disease. At the time of Jordan’s diagnosis we were lucky to live in Seattle where awareness of Alzheimer’s is high. That helped us avoid many problems that I know others experience from the medical establishment. But we’ve each had to handle other issues. Memory problems in older people are expected and tolerated. Memory problems in younger people are often seen as a serious defect.

One situation that stands out in my mind happened on a visit to Florida. After his diagnosis Jordan had severe depression and anxiety, and he was taking a powerful combination of medications, which caused him to lose his balance. He decided to walk several blocks to the beach at sunrise one morning and fell. A police officer happened to be in the area and stopped in his car. His response was “Sir, Are you drunk?” Jordan responded “No. I have Alzheimer’s.” The officer repeated that he felt Jordan was drunk and drove away leaving Jordan on the ground.

My experience with stigma was at work. Because Alzheimer’s remains a diagnosis of exclusion, it takes a tremendous amount of testing to reach that conclusion. I was taking more and more time from my high-pressure job for doctor visits. Jordan and I were also emotionally reeling from new memory problems that would appear weekly. (At one point, Jordan put socks in the fridge.)  I decided to take a leave of absence. When I returned, I found that a shadow replacement had been hired, and I was forced to leave six months later.

Finding courage

When faced with discrimination you must have the courage to say “I’m here and just as important as anyone else.”  We all have weak moments but fighting the illness sometimes means fighting for yourself or your loved one. Breaking Past the Stigma of Alzheimer's: Rob Epp's Story

There is stigma or discrimination surrounding any serious illness. Just ask someone with Parkinson’s or cancer or multiple sclerosis. But, we’ve also have found that people are generally supportive when they are aware. Many “stigma moments” are really caused by ignorance. People don’t understand Alzheimer’s and many even don’t understand what it means to be chronically ill.

So often, people only think of Alzheimer’s as an end-of-life illness. Even in hospitals nurses will say “but he’s so young to have it.” Courage to change the public perception thru education and awareness is key. And it’s usually accomplished one person at a time through personal contact.

Silence is the enemy

Alzheimer’s Disease consumes a tremendous amount of energy and resources. Families are often exhausted by the sheer volume of care responsibilities. And yet this disease is very poorly understood so we also carry the burden of having to educate others.

Jordan quickly tells people that he has Alzheimer’s in phone calls and in person so they understand. He also has cards for this purpose. Family is kept updated about his condition and even the little ones are told what to do if there is a problem. But education is also reaching out to the public.

I find time to do advocacy for the Alzheimer’s Association. It’s not easy since I don’t have family to help care for him when I’m gone, but it’s essential to raise awareness and unite people in the effort to fight this illness and help the people who have it. If people understand then they won’t be afraid. And if they’re not afraid then there is no stigma – just the disease.

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About the Blog Author: Rob Epp is a full-time caregiver for his partner Jordan, who was diagnosed with younger-onset Alzheimer’s four years ago. They live in New Hampshire.

Photos by Shannon Power

Jul 032012
 
American Flag

I have faced many battles in my life.  I served in Vietnam as a Marine Corps corporal. I also completed four tours in Iraq in the U.S. Army, and four of my sons served in Iraq, too.  But all my battles have not been while serving in the military.

My mother passed away from Alzheimer’s disease.  I lost my son, Dennis Jr., in a motorcycle accident.  And now, I am facing my own battle with Alzheimer’s disease.

I was preparing for a sixth deployment to Iraq when my Colonel and my wife brought up concerns about changes they were seeing.  I had just received a Secretary Manager of the Year Award, but I was aware that something was wrong.  I had been waking up in the middle of the night realizing there was something I forgot to do — or something I needed to do.  Recognizing my memory was changing, I decided to retire.   Too many people’s lives would be at risk if I went on a last tour in Iraq.

I was diagnosed in 2008 with early-stage Alzheimer’s.  When I received the diagnosis of Alzheimer’s, it was almost a relief.  It provided an explanation for what was going on.  It also provided a path forward.  There were plans I needed to put in place for the future.

I had made my living will before my first trip to Iraq. But after the diagnosis, my wife Mary and I updated our advance directives, power of attorneys and will.

Dennis Henley Sr. with General Franks and son Dennis Henley Jr.

Everything has been documented, so there is no dispute and no questions for my children when this disease progresses.  We dotted all the “I’s” and crossed all the “T’s” to make sure everything is in place. It’s an important thing for anyone who has been diagnosed to do.

It’s also important to realize that a diagnosis isn’t the end of the world.  Truly – it’s not.  You aren’t alone. There are so many people available to help you and so many people committed to finding a cure.  It’s difficult to accept, but easier to do if you are open and honest with those around you.

In fact, I talked until 2 a.m. about my diagnosis with one of my military buddies last week.  I have friends that I went through grade school, high school and the military with, and we have no secrets. We openly talk about this disease.  It’s a source of strength and comfort to have the people around me know what is going on. Alzheimer’s isn’t my fault.  It’s no one’s fault.  And there is no reason to feel guilt over it.  It’s out of my control.

It really helped having an Alzheimer’s Association representative from my local chapter come and explain why things aren’t like they used to be to my family.  I have 11 grandchildren – and they all understand that things aren’t quite the same and the whole family is making adjustments.  But that doesn’t keep us from spending meaningful time together, which is what I plan to do tomorrow on the Fourth of July.

We will all dress in red, white and blue and gather together for a barbeque at my son’s house.  Our flag will be at half mast, and I will remember the battles I have been in and the one I am facing now.  I believe we are here to help others – to leave a legacy.  As I spend time with my family, I know that I have left my mark by raising my family to be good citizens.  And I still have more to give. I will keep on moving forward and not give up.

Dennis Henley is a member of the national Alzheimer’s Association 2012 Early-Stage Advisory Group. He was diagnosed with early-stage Alzheimer’s in 2008. Prior to his retirement, he served in the U.S. military for 26 years, including working in counter intelligence for the Army and as the Chief of Security for the Army Corp of Engineers in Jacksonville, Fla.  Dennis lives in Littlestown, Pa., with his wife, Mary.  

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Jun 222011
 

As our first effort at The Longest Day is coming to an end, I’m excited about the potential of this event.  When I was on the Chicago Lakefront on my bike during my four hours of riding to honor my mother, who had Alzheimer’s, for all that she did for my brother and me, I was also thinking about all the people who have the disease today (an estimated 5.4 million) and, regrettably, all the people who will have it going forward (as many as 16 million just 39 years from now unless we change the course of the disease through sufficient research).  And I was thinking about their caregivers (15 million already today).

At the Alzheimer’s Association we work every day to improve the lives of individuals who are facing the disease, both those with a diagnosis and those who care for them, as we also invest directly in research to change the course of the disease and as we pursue public policy changes to have both our federal and state leaders recognize and address the dramatic impact of Alzheimer’s at both the human level and an economic level.   Another thing we’ve been working on in the last few years, which I hope you’ve noticed, is raising public attention to the disease and engaging people across the country in activities that will ultimately make better care, improved diagnosis, effective treatments and prevention a reality.

The Longest Day is the kind of event that can engage people around the country in helping us make those investments in support, public policy and research while it also focuses public attention on the realities of the disease: far from “a little memory loss” as too many Americans still believe, today it is progressive, degenerative and fatal.  It doesn’t have to go on that way. The Longest Day is also the kind of activity that will help us change those realities.  We can do it.  With the public mobilized we can put an end to Alzheimer’s.  The research community believes that we can conquer it and I do too.

I want to thank everyone who supports our work every day:  our donors, our volunteers, our staff and everyone who helps in even the smallest way.  Today I particularly want to thank the individuals who participated in today’s event. They are pioneers in our journey toward real changes in Alzheimer’s.  I look forward to working with even more of you next year on The Longest Day as we aim toward the vision of the Alzheimer’s Association, a world without Alzheimer’s.  Join us.

Harry Johns is president and chief executive officer of the Alzheimer’s Association.

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