Monthly Archives: December 2018

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.

“The Longest Day 2017 was truly one of the most memorable days of my life.”

Actress Amy Aquino, currently starring as Lt. Grace Billets on the Amazon series “Bosch,” is known for equally tough-as-nails characters she has brought to life on “ER,” “Being Human” and “Felicity.” She recently spoke with us about her deep familial connection to Alzheimer’s disease and how the color purple has inspired her participation in the Alzheimer’s Association’s fundraising event, The Longest Day, which encourages participants to select an activity they love — or an activity loved by those affected — to help end Alzheimer’s.

Amy, tell us about how Alzheimer’s disease has affected you and your family.

Six of the 12 Aquino siblings developed Alzheimer’s or dementia.

This disease has been a part of my life since my teens. My father had 11 siblings; half of those brothers and sisters developed Alzheimer’s or another dementia, including early-onset Alzheimer’s. The first relative I saw affected was my Aunt Rose.

Rose started showing signs of the disease in her late 50s, but neither she nor her doctors could identify what was happening; this was the early 1970s, and there was very little awareness of the disease. She lived in Philadelphia and my dad and another sibling living in the suburbs started getting emergency calls that she was wandering around the city. The whole family was traumatized, trying to figure out what was wrong with her and experimenting with various “cures”, until it was finally determined that Rose – like her father before her – had Alzheimer’s disease.

About 10 years later, one of my dad’s brothers was also diagnosed. Like Aunt Rose, Uncle Mike was brilliant, curious, vibrant and involved – all of Dad’s siblings were. Rose, my inspiration in gardening, lost her ability to garden, and Mike, an engineer, also lost his greatness to the disease.

Four siblings followed. Aunt Florence was fiercely independent throughout her life, building a long career in New York as an actress and playwright. Though she lived alone and had no children, she lavished attention on her nieces and nephews, and mentored hundreds of at-risk kids. Despite her having seen Rose through the disease, when she herself was hit with it she didn’t recognize it. Seeing her lose her independence – and how furious she was about being moved into memory care – was so hard to watch. As I watched her and the others grapple with dementia – including my own dad, near the end of his life— I realized that I almost couldn’t recall a time when I wasn’t witnessing some form of this disease. That is why I am trying to spread awareness of what Alzheimer’s takes away from both the person with the disease and the people supporting him or her.

You rocked your participation in The Longest Day last year. You were active on social media throughout the day, making blackberry jam with family and friends in honor of your dad and his siblings. Are you participating again this year?

I am definitely participating this year! I saw the first blooms on my blackberry bramble outside my kitchen window in March and I’ve been dumping the recent rainwater all over them. Last year I initially panicked about what I could do – then it hit me: I have a freezer full of blackberries that need to be made into jam! Since I learned gardening from Dad and his siblings, it was a perfect tribute. AND they are PURPLE! Last year I mailed out dozens of jars of jam to people who donated, and I’m looking forward to what this year brings.

I’m so excited about the Longest Day, I even came up with an idea I want to pitch to my neighbors, and anyone living in a warmer climate: LAVENDER. Not the color, but the plant. People all over Southern California are using lavender as an attractive and drought-tolerant landscape plant. In June it tends to be bursting with blooms that will eventually need to be cut back anyway. So what better way to raise awareness and reward donations than harvesting and sharing those beautiful, fragrant blossoms which, on top of it all, are Alzheimer’s purple!

How did you recruit people to participate in The Longest Day, and what was the day like for you, your friends and family?

Recruiting was as simple as sending out an email describing what I was going to be doing. My close friends and family have been aware of or have participated in jam making before, and were eager to show up and get purple. And I know that the promise of a thank-you jar of jam helped persuade a lot of people to contribute.

I had five people helping make jam in the morning hours and three midday; my young grandnieces came up from Irvine with their mom later in the afternoon and we made jam until early evening. We capped the day off with a celebratory dinner, which was a fantastic way to end such a special day. The next day I found a lovely note about the day that my niece Alyssa had drawn and left for me — it became the perfect thank-you card for those who contributed.

The Longest Day 2017 was truly one of the most memorable days of my life. It was a procession of wonderful friends who were genuinely so excited to come over and help the cause, and we all had a spectacular time. It felt very reassuring and uplifting to know how much this means to so many people. Not everyone I know is directly affected by Alzheimer’s disease, but they all completely understood how the folks around them were, and the love was palpable. Everyone wanted to be a part of it, and everyone loved getting their hands purple!

As someone who has seen this disease affect their family so much, what do you think someone should do if they suspect that someone they love has Alzheimer’s or dementia?

If you’re worried that someone in your life is affected, then there is probably a good reason. The first thing someone should do is contact the Alzheimer’s Association by calling the 24/7 helpline, then read everything they can on alz.org.

My best advice is to not be afraid, but also not to pretend as if it’s not happening. I think there can be a tendency, when you don’t know what’s going on, to get angry or frustrated with the behavior. You may say things like: “I just told you that,” “Why didn’t you show up?” and “Why do you keep losing your keys?” That, obviously, isn’t helpful. Once you receive a diagnosis, the Alzheimer’s Association will be your best resource for the next steps you need to take.

Don’t put your head in the sand; don’t make assumptions. Addressing this disease directly and putting plans into place may help avoid something terrible from happening, like someone wandering outside of their home and getting lost. This disease is only going to get worse for my generation; if we all try and make a difference, I know we can change that together.

You speak about these strong people in your life who were lost to Alzheimer’s, who were so smart and fierce. Is that how you feel about the characters you play, such as Grace Billets?

I am grateful to still be playing strong female characters that people can look up to. It’s a privilege at this time in my life to have the role of Lt. Grace Billets, Harry’s boss on Amazon’s “Bosch.”

She is like me and so many women I have known – layered, deeply complicated – successful at what she does but still capable of screwing up. No one is perfect. We are just human.

The challenge of Alzheimer’s, for the person with the disease and their loved ones, is losing control of much of your life, but finding a way to continue living it. The drama of season four centers around this as well; I’m excited to see season four. My character is having to take command – temporarily –  during a very dangerous and tumultuous time in her division. Meanwhile, Harry, who is still her subordinate as well as her old friend, is going through emotional turmoil makes him withdraw more than ever, and is pushing him toward a possibly disastrous mistake.

With Alzheimer’s, so many things seem like they are unsurmountable – but if you call on all the resources available, in your community and in yourself, you can find a way through.

So whether it’s jam-making, a family day at the beach or a marathon, everyone can do their part to help end Alzheimer’s on The Longest Day. Just make sure to wear your purple – even if it’s on your hands!

About Amy:  Born in New Jersey and raised in Philadelphia, veteran actress Amy Aquino currently stars in the Amazon hit series, “Bosch.” The series returned for its fourth season in April 2018, and has already been renewed for a fifth. 

Graduating with a B.A. in Biology from Harvard University, she went on to earn her MFA at the Yale School of Drama. Aquino then split her acting career between New York and L.A., doing TV, film and theater.

Aquino lives in a 1915 Pagoda-style bungalow in Hollywood, which she and her husband, financial advisor Drew McCoy, restored and had landmarked. She is active in L.A.’s historical preservation movement, helping establish historical preservation status for her Sunset Square neighborhood, and being appointed by the mayor to its Historical Preservation Overlay Zone Board. She’s also a director of Arts for LA.