The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer's disease.
Tonight, on June 21, 2018, my team is hosting our first-ever benefit concert and cocktail hour for The Longest Day.
Tonight, we are making connections, not only with other people who have experienced the effects of Alzheimer’s disease, but connections to music and my Nana. We are here to help find a cure so that no one ever has to live through what she and I did.
Growing up, my Nana and I were inseparable, from my days as an infant to all of my school functions. Days off from school were spent at the mall shopping for her favorite designer purse brand and eating pizza at the food court – just Nana and me.
All of the other time we spent together was at the piano. As a well-practiced piano teacher, Nana required all of her children and grandchildren to learn the instrument, but I was the only one that shared her same talent and love of the art form. Nana and I had weekly piano lessons, annual recitals and countless competitions and performances that bonded us closer and closer through each stroke of a key. Nana and Nanita.
Then Nana was diagnosed with Alzheimer’s.
She couldn’t calculate the discount of a purse she wanted to buy. She couldn’t figure out how to swipe a credit card. Worst of all, she couldn’t remember her childhood lullaby on the piano – or how to read music anymore.
Nana slowly started to become an unfamiliar person in a familiar body. I didn’t know how to handle it … or how to help her through it.
That’s when I discovered The Longest Day.
The Longest Day allows me the same opportunity as any other group fundraising event—raising awareness and funds to further research—but with a very personal twist.
My family and friends chose the month of May as the lead-up to The Longest Day and to honor Nana as the matron of our family. Each year #baNANApianorama hosts a piano practice-a-thon event in Miami Lakes, Florida in order to fundraise leading up to June 21. Family, friends, former piano students of Nana’s and guests of the venue gather together to practice piano for the cause; in our first three years, we have raised over $20,000! Little did we know how significant that date would become, as after our first event in 2016, Nana lost her battle to Alzheimer’s on Mother’s Day that year.
Today, The Longest Day, we continue our efforts to remember her.
As our final event for the 2018 fundraising season, former piano students of my Nana are performing some of her favorite pieces in a formal setting while guests enjoy a photo memorial of Nana. I can’t think of a better way to spend this evening.
Although Nana was taken from us way too soon, she is now my guardian angel. She is watching over me and guiding me through every step of life as she always did.
Tonight I offer my music and my support to all those enduring challenging times caring for someone with Alzheimer’s disease, grappling with the news of the diagnosis, or grieving someone that he or she has recently lost. We all have something in common: our hope, our love and the care we give our loved ones.
We are not alone. Together we can find a cure.
One note at a time.
About Jessica: Jessica Comellas is making beautiful music in honor of the woman she bonded with through music: her Nana. Click here to visit Jessica’s team page.
It has been more than a year since my grandmother was diagnosed with Alzheimer’s disease. This afternoon, my team is embarking on three hours of indoor cycling in her honor, and in honor of those they love.
My grandmother is a woman who has been through more than any one person should have to endure in a lifetime. She survived her husband’s death after caring for him during his ten-year battle with cancer; she has survived the deaths of her children and grandchildren. Her trials are truly too numerous for me to list.
Her strength CARRIED me to the hardest obstacle I have ever faced, and she was strong for me when I couldn’t be. She was the person who walked me, what seemed like miles, from a hospital waiting room to the critical care unit my father was in when doctors told me that it was time to let him go. She physically and emotionally held me up the entire way.
Thinking about it now, I can’t recall if I ever thanked her for that. Today, that is exactly what I’m doing. Thanking her the only way I know how.
After having participated in last year’s Walk to End Alzheimer’s, I decided that a great way to raise money would be to host a Spin-A-Thon. As I began to research how to pull this off, I was elated to discover that THERE IS A WHOLE DAY dedicated to this type of event! This is how I discovered The Longest Day … completely by accident. ‘Serendipitous’ is the only word I use to describe it.
I was even more determined to make this day happen after I began to speak with people about their interest in participating. I was blown away to hear just how many people were being directly affected by this disease. I am almost certain that EVERY person on my team has a story to tell.
Beginning at 1 p.m., we will be spinning through the decades in honor of those we love.
We will start with an ‘80s soundtrack for the first hour. Next we move into the ‘90s, finishing strong with today’s top 40. This progression is significant to me – cycling through the decades, spinning to music that elicits childhood memories, first loves and first heartbreaks.
I am reminded of a documentary I watched a few years ago called “Alive Inside: A Story of Music and Memory” where social worker Dan Cohen works to advocate the use of music therapy for people living with Alzheimer’s and dementia. Throughout the film, the astounding effect that music can have is clear; it was nothing short of incredible. Today I am using cycling and music to help thank my grandmother for all of those times she carried me.
I will still be thanking her long after my name is erased from her memory. Now it’s my turn to carry her.
Today we are doing what we love for who we love. Today we remember those we said we would never forget.
About Leann: “I am fighting to end Alzheimer’s on The Longest Day because I want to help others from having to live through this disease. After a lifetime of putting together the puzzle of life, Alzheimer’s pulls it apart piece by piece.” Leann Moore is cycling through the decades in honor of her beloved grandmother. Click to here to visit Leann’s team page.
This morning, as I prepare for my day in my tent in Northern Scotland, I am thinking about how, for people caring for loved ones living with Alzheimer’s and dementia, every day seems like the longest day. That is why I am doing something I love for someone I love. I’ve lived through it myself – and I want to support all the caregivers and care partners who take this journey together.
Today, and for the next 60 days, I will be walking across Scotland.
Each day, as I walk approximately 20 miles carrying a 50-pound backpack, I will be remembering the years I spent caring for my mother as we experienced her dementia together.
Although I was happy to take on the role of caregiver – and would do it again – it was not easy for either of us.
Today, I want others to know that they are not alone.
I want people experiencing this disease to take advantage of the support groups and other means of comfort that the Alzheimer’s Association provides, for both the person living with the disease and their family. Every one of us needs that support to carry us through. And The Longest Day affords us the ability to do just that.
Today’s hiking goal is 23 miles towards Inverness on the Great Glen Way.
My total walk is 650 miles, to be done in three phases. I am about halfway through phase one, which started at Aviemore and ends at Ullapool in about three weeks. Then I move on to the outer and inner Islands and end my walk along Hadrian’s Wall to Wall’s End. This entire journey will be approximately 1,500,000 steps.
Later tonight I will take ‘the high road’, where I will have beautiful views of Loch Ness, followed by Loch Oich and the crossing of the Oich Bridge. As I enjoy these vistas, I will stay strong and be ready to continue on tomorrow.
Each step will be a step toward the goal of ending Alzheimer’s … for my mom … and for me.
About Anne: Anne Burris is hiking approximately 650 miles, translating to over 1,500,000 steps, across the Scottish Highlands in remembrance of her mother, Ada Burris, and to raise awareness about Alzheimer’s disease. Click here to visit Anne’s team page.
We spoke with bridge club owner and American Contract Bridge League (ACBL) accredited teacher Silvana Scotto Morici about her involvement in the Alzheimer’s Association event The Longest Day. Read on to learn why bridge players come back year after year to raise funds and awareness for Alzheimer’s disease.
Tell us how you got involved with bridge and why you made the game your activity for The Longest Day.
I got into bridge completely by accident. I had sold the company I owned and retired at 37. It was difficult being away from work and I realized that I needed a new challenge. A woman said to me, “You have all of this free time. Why don’t you learn to play bridge?” I replied: “Sign me up!” I got to my first lesson and within two weeks my friend and I realized that we could be great at this game. Before our first competitive event, we trained with a pro, like you would for a triathlon, because we were wacky enough and had enough time on our hands.
Today, I’m the owner of a bridge club. When I was out in San Francisco and learned about the concept of bringing The Longest Day to life with a day of competitive bridge through the ACBL, I knew I could make it work – and I did! This is my 6th year raising funds and awareness for the Alzheimer’s Association through this event.
Why do you think bridge is a great activity for The Longest Day? What are your plans for The Longest Day this year?
We already play for about four hours on average, so asking people to play for a little bit longer isn’t a stretch. At tournaments, the average player would play for seven hours straight. For these players, it isn’t a big deal – they really love it.
There was another draw, too. Bridge players play for masterpoint points, and the league said that it would give more points out on The Longest Day. To our players, it’s like being paid overtime! Everyone was on board.
We are always looking to beat our numbers from the previous year and exceed our own expectations. We launch registration in the beginning of April with a commitment from 18 teams, four to seven people per team, ready to go. At this point, it’s a well-oiled machine. The initial model was set up as a fun event, and today people are so involved that it has become just another great day of playing their favorite game.
What motivates you to raise funds and awareness for Alzheimer’s disease?
My personal motivation is that my great-grandmother had Alzheimer’s; it was difficult to watch her experience the disease. Fast forward to years later and I realized as a fairly young bridge player that the older people in front of my eyes – those in the bridge community – were showing me ways to keep the brain active every day. These people try to stay healthy by constantly challenging themselves. Bridge is a sort of fountain of youth for this crowd.
What is the day-of like? How do you put together a team?
For this event, teams aren’t put together by skill but by will. We ask someone if they can play during a particular slot and then pass the baton to the next group, collectively raising at least $500. We also continually display how much everyone has raised, so it’s very competitive! No one wants to be last … everyone wants to be first. Everyone pushes each other up the ladder.
I am super impressed with how many people are dedicated to playing the entire time. Six or seven people who have played for five years straight have played every minute from beginning to end – and then want to do it all again. I am exhausted by the end of the day – bridge is taxing on the brain – but it’s also so much fun. It’s about endurance, which you need to persevere when fighting or living with Alzheimer’s disease.
We heard that you have a particularly exciting story about fundraising on The Longest Day.
I sure do. One woman said to me: “If you hit $100,000, I will match it.” She only told me. So there I was behind the scenes, staying quiet but secretly stirring. I kept saying to the larger group, “I can’t tell you why, but we need to hit $100,000.”
There was no way I would let this not happen. We were so close. People were pulling out their wallets, writing checks. I told people to stop playing and to call home. We asked people to donate $5, $25. When we got close, the woman said I could tell the group about the match. By the time we told everyone, we overdid it; we raised $8,000 more than we needed! We made that happen together.
The bridge community is a super bright and involved community. I know people who are older than 100 who work to keep active mentally and physically. When our community flexes its abilities, it helps those living with Alzheimer’s. The funds and awareness raised through playing bridge does so much for so many people, and I am proud to be part of this community.
About Silvana: Owner of the Sagamore Bridge Club, a TAP certified bridge instructor, a certified Bridge Director and an ACBL Life Master, Silvana is fighting to end Alzheimer’s on The Longest Day. Visit her page here.