Every year on Giving Tuesday we highlight stories from different people in our community who have been affected by ALS. This year different families impacted by ALS share their traditions, and how ALS has affected those traditions.
Read their individual stories below, and donate to ALS TDI today to support ALS research.
The Emerick Family
Last week my seven-year-old daughter came running home, eager to share a story she wrote in school about her favorite family tradition. She wrote about our annual trip to the Christmas tree farm. She joyfully recalled running through the fields, choosing the perfect tree, and most importantly drinking hot chocolate. As my daughter read her story, I remembered that this tradition began with my mom and dad in the mountains of North Carolina. I share many of those same joyful memories that my daughter was writing about with my dad, Brian Emerick.
I remember singing Christmas carols in the car ride up, and my brother rolling his eyes at my singing. I remember running around trying to find the perfect tree and my dad telling us to choose a tree with strong branches that “wasn’t too full but not too skinny.” As we brought the tree home, I remember my father and mother carefully placing the lights on the tree and then my whole family eagerly unwrapping and hanging ornaments.
In November of 2004, on our annual trip to the mountains, my father had a noticeable limp. Gradually, the limp became worse, and doctors performed tests. He was diagnosed with ALS at the age of 52. That trip was the last time my father was able to cut down a tree. In the following years, I watched as our family tradition changed. First, we stopped driving to the mountains and got an artificial tree. Then when my father’s hands lacked the strength to hang ornaments, he sat in his chair unable to participate. Even more devastating than taking the joy of our annual Christmas traditions, ALS took all future celebrations spent together when he passed away in March 2008.
As my daughter finished reading her Christmas tree story to me, I looked into her bright blue eyes and again felt the urgency to find a cure for ALS. My daughter never got to meet her grandfather. She never got to find the perfect tree, share hot chocolate, or hang ornaments with him.
While my family has continued the tradition of cutting down Christmas trees, I worry that one day my daughters will write this same story about me. My family has familial ALS. For us, the urgency to find effective treatments comes with the utmost importance to protect future generations. For our family, ALS TDI provides hope that we will not face the sadness of broken family traditions again. More than hope, ALS TDI’s research gives me the belief that effective treatments will be found for all ALS patients. The work that ALS TDI is doing allows me to look forward without fear. I look forward to meeting my future grandchildren, picking out a tree, and creating new family traditions.
You can donate to ALS TDI this #GivingTuesday, and help on our mission to #EndALS, here: www.als.net/donate/givingtuesday/?soc=GT608
Gil Garcia
The holidays are once again upon us. This year marks my sixth holiday season since being diagnosed with ALS. As with most things in life, there are changes. Changes in routine. Changes in family dynamics. Changes in traditions. Most are welcome and are part of the cycle of a lifetime. Then, there are changes that are thrust upon us, not by choice. Adaptation: the ever-present need that comes with ALS.
My family is used to evolving traditions. As our family grows and members pass the "torch", we recreate the norms. Unfortunately, this time ALS has made decisions for us. Where we used to freely make our holiday rounds, now we must take everything into consideration. I am essentially completely paralyzed. Wheelchair and vent dependent. This leads us to think constantly, can we get into the place we are going to? How do I meet personal needs? These days, the answers to those questions leave us basically one option: holidays will have to come to us.
Our family has done well to adapt to this. Everyone understands the situation and makes concessions to accommodate my needs. While the traditions have changed location, one thing remains the same; love and joy permeate the occasion. We have created new traditions built on the foundation of years gone by.
This is why I support ALS TDI. Over the years they have worked tirelessly, adapting to the new challenges presented by the ever-changing world of ALS research. ALS TDI gives us hope that we will one day have a world without ALS. One day ALS will no longer be able to affect the traditions we hold so dear.
You can donate to ALS TDI this #GivingTuesday, and help on our mission to #EndALS, here: www.als.net/donate/givingtuesday/?soc=GT609
Prosser Family
Everyone thinks the first holidays without a loved one are the worst; However, I have found the second holidays to be the worst. The first holidays you’re still in shock, it’s all a bad dream and you’re still in survival mode. The second holidays are when reality sets in and you know that this loss is permanent, no longer a bad dream but a sad and painful reality. My family and I first learned that lesson when Mom died in 2008. As we approach our second holiday season without Dad, we face the same grim reality, the holidays will truly never be the same.
My Dad, James Prosser, was diagnosed with ALS in the spring of 2019, and we lost him in October of 2020. Before that, Dad was an athletic and outgoing man who loved to spend time with his family. Dad particularly loved to bring joy to others during the holidays. At Thanksgiving that meant cooking a delicious meal for his family, specifically cooking a ham, in addition to the turkey, because I don’t like turkey. It meant getting up early to make sure the turkey went in the oven at the proper time while monitoring the ham upstairs in the small second kitchen. While Dad took great pride in cooking a wonderful holiday feast at Thanksgiving his real time to shine was Christmas. This was when he could really bring joy to others.
Dad had a great sense of humor but was often quiet and observant. You wouldn’t know it by meeting him once or even twice but after you got to know him you knew he was a kind and giving man. He would gladly give his time, spare change, and any other resource he had available to help others. At the holidays he channeled all his love and care into his gift-giving, making sure to think of everyone, and he was great at gift-giving. There were many years when my sister Beth and I messed up his plans for a big Christmas reveal and accidentally found our big gifts, like the year we accidentally walked in on the brand-new family computer set up in the den, the year I went to turn off Dad’s alarm clock and walked in on our new skis, and the year we accidentally found our new bicycles in the garage. And most notably, the year we ruined the surprise of getting a Christmas puppy when I answered the house phone and the man at the other end said “Hi, I’m returning your call about the puppy.”
My favorite Christmas memory is the year Dad decorated the tree with jewelry for Mom. Dad stood on the opposite side of the room, beaming from ear to ear as Mom took each box off the tree and examined the beautiful matching set Dad gifted her. Dad was a quiet romantic; he didn’t want big fanfare or lots of attention, but he got the most joy out of making others happy. When Mom died and Dad had to take over all the gift-giving tasks at Christmas, he made sure to still fill our stockings with the things Mom loved to get us. Now without Dad, Beth and I carry on the traditions we can and we both love bringing others joy at the holidays. Dad especially loved spoiling the kids at Christmas, something Beth and I will continue with my son Henry in Dad’s memory. I know nothing would bring Dad more joy than to be able to continue spoiling his grandson, and I intend on making every Christmas special for Henry, so he can feel as much joy as we did with Dad during the holidays.
Keeping Dad’s memory alive and making sure others don’t have to suffer the same loss as my family and me, is why I continue to work to fund the lab at ALS TDI. To find treatments and one day a cure to end ALS so that no one will have to spend a Christmas without their dad or grandpa.
You can donate to ALS TDI this #GivingTuesday, and help on our mission to #EndALS, here: www.als.net/donate/givingtuesday/?soc=GT610
Sandra Marlowe
“Because of our traditions, we've kept our balance for many, many years. Here in Anatevka, we have traditions for everything... how to eat, how to sleep, even, how to wear clothes. Because of our traditions, everyone knows who he is and what God expects him to do.” This quote is spoken by Tevye, singing about his traditions, talking to God and the audience in the classic musical “Fiddler on the Roof.”
Like Tevye, our family traditions involve faith in God, love of family, laughter, cooking and eating together, and playing games. For Christmas, everyone wraps up a new game, and we have a game exchange that everyone looks forward to all year. After opening them we choose a few games to play right away.
Our close-knit family also rallies around each other whenever there is a need. Throughout the world, families were brought together…or separated by COVID-19 restrictions and lockdowns in early March 2020. Our family was then impacted by the difficult news I received on March 30, 2020, when I was diagnosed with Bulbar Onset ALS. Average survival for someone my age is 27 months from symptom onset. I am now at 24 months since my first symptoms began.
I will do whatever I can to help defeat this monster of a disease. In September of 2020, I enrolled in the Precision Medicine Program (PMP) run by the ALS Therapy Development Institute (ALS TDI). Every month I wear sensors for a week on my wrists and ankles to gather data that the scientists use in their research. I also log in to my ALS TDI account three times that week to do sets of exercises. I can then see the data collected in my online portal to help me see my disease progression. For my birthday last April, I did an online fundraiser for ALS TDI, and I was so grateful for all my friends who generously donated! My precious mother recently passed away and the family decided to honor her by encouraging friends to support my fundraising page at ALS TDI.
Our family has come together and dealt with this ALS challenge as a team. Our children have assisted by providing meals, feeding me through my feeding tube, shopping for us, driving me to doctor appointments, and accompanying us on frequent out-of-state trips for my participation in the Healy ALS Platform Trial through Mass General Hospital. Many people, when receiving a fatal diagnosis, will take off and travel while they still can. Unfortunately, with COVID-19 travel restrictions in place, there were no “around the world” tours! We were mostly right here at home in Kentucky, adjusting to our new “normal.” There were tears, yes, as we realized that my days on earth are numbered. Our family and friends have come alongside us in many beautiful ways.
We will gather for Thanksgiving this year, something that we were not able to do last year. All my nutrition comes through a feeding tube and ALS has taken my voice, but I will enjoy the sights, sounds, and smells of the holiday. Many of our traditions are vastly different from those spoken of by Tevye. But others, like commitment to God and loving and serving one another, have been rooted in our family for generations. I pray that they will echo across our lives for many years to come.
You can donate to ALS TDI this #GivingTuesday, and help on our mission to #EndALS, here: www.als.net/donate/givingtuesday/?soc=GT611
Neil Herbst
Neil Herbst is doing what he feels he needs to do to end ALS. Diagnosed in 2020 with ALS, he felt specifically connected to the disease’s namesake, Lou Gehrig, from his close ties to the Yankees for most of his life.
Due to a mistake one day, while working as a busboy in a swanky restaurant, fate led him to meet “The Boss,” otherwise known as George Steinbrenner, principal owner of the New York Yankees at the time. Steinbrenner got his information and invited him to be a Yankees Bat Boy from 1977-1978 when he was just 17 years old. ALS wasn’t a very well-known disease at the time, Neil knew it was rare and devastating, but not much else. He did know about Lou Gehrig though and loved hearing of his great nature as a teammate and player and how he was a man ahead of his time.
A few months after his diagnosis, in June 2020 for the inaugural Lou Gehrig Day, Neil was asked to throw out the first pitch at Yankees stadium. Neil says it “felt amazing representing Lou Gehrig and his spirit of honesty, integrity, working hard, and giving back.”
Neil works hard to set an example for his family, but most importantly his Granddaughter Ellie Rae who is just six months old. One tradition he wants to stay around for is having a catch in the backyard at the end of a long day. “When there’s a tough day or you just want to talk to people, we go outside and have a catch, throwing the baseball to each other. This gave me time to talk with my son when no one else is around. Just quiet, private time to toss the ball and talk about things.
Neil and his wife Gail started supporting ALS TDI when his niece Eryenne connected him to the ALS TDI team through a friend. “We love the research, and we love the fact that the money we raise is going towards finding a cure,” says Neil. “Being able to deal with people with this disease is not easy and at the end of the day, you guys are awesome.”
You can donate to ALS TDI this #GivingTuesday, and help on our mission to #EndALS, here: www.als.net/donate/givingtuesday/?soc=GT612
Uncle Bryan
I only really see my Uncle Bryan for family gatherings to celebrate Thanksgiving, Christmas, or birthdays, but the memories from these occasions are some of the ones I hold closest. Although my family doesn’t have many traditions, these gatherings are always predictable in the most comforting of ways.
When we celebrate various holidays or birthdays, we usually meet at my Grandparents’ house. My Uncle Bryan would always encourage us to go outside and be active, joining us most of the time. When I think of my Uncle Bryan, I think of someone who loves to move. Prior to his diagnosis, he participated in Ironman competitions and triathlons regularly, along with the intense training that goes with it. I have countless memories of my family, including my uncle, playing basketball or badminton in the driveway, with deflated basketballs older than I am and rackets held together with duct tape. We didn’t care about that as we were always having a blast. My uncle has a charismatic personality and can easily bring light to a conversation with his wit. This always shows through during the customary after-dinner pool game banter that's exchanged between him, my dad, and grandpa.
I remember being in my dorm room my freshman year of college and getting a call from my mom. When she told me that my Uncle Bryan had been diagnosed with ALS, I was shocked. I knew about ALS thanks to the “ALS Ice Bucket Challenge” that went around in 2014, but I hadn’t thought much about it since. When we gathered for Christmas that year, what was once something comforting and predictable was now a little different. My mom had to open my Uncle’s bottles and draw his cards when we played games. It broke my heart watching his hands shake while he attempted to pass the rolls at the dinner table.
As a biology major at Boston University, I knew that I wanted to get involved in research. I thought of my uncle and decided I wanted to contribute to the fight against his illness. This is how I found my ALS TDI family. In my time interning here at ALS TDI, I have mainly worked in the animal facility doing husbandry for the zebrafish model, in the lab doing nucleic acid purification, and in the office preparing materials for the Precision Medicine Program (PMP).
I work to #EndALS for the person who is a part of so many of my favorite holiday traditions. ALS TDI will not stop until there is a treatment for every person with ALS, so no family must miss out on cherished traditions. Please consider donating this Giving Tuesday to help ALS TDI #EndALS.
You can donate to ALS TDI this #GivingTuesday, and help on our mission to #EndALS, here: www.als.net/donate/givingtuesday/?soc=GT613
Pumpkin Pie with Mom
For as long as I can remember my mother loved Thanksgiving so much especially making pumpkin pies, a tradition handed down to her by her mother. What made this tradition so so special and really stuck with me was her insistence that we ate the pumpkin pie for breakfast on Thanksgiving morning! As a child, I thought that was the coolest thing ever!!!! Later in my 30's and as I had children, I thought this was a great tradition, one that I wanted to share with my kids, which in turn they really loved.
In early 2020 my sister and I started to see a drastic decline in my mom's movement and speech. After several months of seeing many specialists not knowing what was wrong with her, on August 4th, 2020, she was diagnosed with bulbar ALS and given 2-5 years to live. We thought "let's get her in clinical trials on all the best drugs and beat this!" At first, my mom took Riluzole then NUEDEXTA followed by a lot of drugs to keep her comfortable. She had a hard time swallowing so we had to crush up these pills, multiple times a day and put them in her food. When she could still talk, we asked her what she wanted them in at first it was vanilla ice cream all the way then she said pumpkin pie. My husband made these little pumpkin pie cups that were really delicious.
Crushing up pill after pill after pill into these little slices of happiness made me so angry. That happy tradition I had growing up, had suddenly taken a dark turn as a drug delivery device to try and keep her alive. My mom never made it even close to her prognosis. She died 6 weeks after her diagnosis. She must have had pumpkin pie for 5 of those 6 weeks every single day. I tried to see the happy side of giving her something she loved with all these drugs, but I did feel like ALS was completely robbing me of this happy childhood memory.
Going into the holiday season, I do want to keep her traditions alive and keep eating pumpkin pie on Thanksgiving morning. I still feel sick every time I see a piece of pumpkin pie and can't help but think about the end of her life. I must try and fight to see the positive and I can still see her laughing and eating pumpkin pie and watching the Macy's Day parade, I must keep that picture in my head. I must keep the tradition alive and make sure ALS doesn't rob my children of these happy memories we can have together.
My mom is the best part of me, and I will use her strength to help the fight to find a cure for ALS! Please donate to ALS TDI this #GivingTuesday, and help on our mission to #EndALS, here: www.als.net/donate/givingtuesday/?soc=GT614
Fred Standish
Anyone who knows my friend Glynis knows that it was in 2016 that the ALS Grinch stole Christmas from her. For it was in that year of 2016 that the love of Glynis’ life, Vince Murray, lost his battle with ALS. Though Christmas still came, without Vince, Christmas was now just another day for Glynis. Only sadder.
Now anyone that knows Glynis knows that Glynis couldn’t let her holiday spirit be sad for long. And so, in 2018, Glynis had a notion. What if we get the ALS family together and exchange ornaments? To help remind us of all that during the holiday season, we are not alone. And so began the tradition. The ALS ornament exchange. In 2018 fifty-six ornaments were exchanged, in 2019 the participants grew to 141, in 2020, the tradition continued despite the bah humbug and in 2021 the exchange of ornaments will touch 172. For so many of us, being a part of the ornament exchange means so much.
In 2016, when ALS took the love of my life, Fred Standish, Thanksgiving Day was so much sadder. How Fred loved Thanksgiving. He loved cooking, carving the Turkey, watching parades and football, then gathering the family at the table. Every Thanksgiving Fred typed up his spreadsheet- we called it the “Fredule”. In the days after his loss, we have tried to recreate the “Fredule” but it isn’t the same. Yet it is in his honor that we still gather together. Because for Fred, Thanksgiving was a holiday to celebrate family.
We wish the ALS family weren’t growing. Sadly, it is because of ALS we are connected, and it is because of the ALS ornament exchange we stay connected. Anyone who has participated in ALS Ornament Exchange knows …we are all tied together in one hope … that by Christmas of 2022, ALS will be cured. Until then, we fight for treatments and cures for everyone living with ALS.
You can donate to ALS TDI this #GivingTuesday, and help on our mission to #EndALS, here: www.als.net/donate/givingtuesday/?soc=GT615
We are so thankful for everyone who shared their stories this Giving Tuesday and to everyone working to help us hit our goal of $100,000 in one day for ALS research!
You can donate to ALS TDI this #GivingTuesday, and help on our mission to #EndALS, here.
www.als.net/donate/givingtuesday/?soc=GT615
