Giving Tuesday 2022
Giving Tuesday is an annual day of giving back to support the causes that matter most to you.
Every year on Giving Tuesday ALS TDI highlights different people in our community who have been affected by ALS, and who are sharing their stories to help advance treatments. Read their individual stories below, and donate to ALS TDI today to support ALS research.
Juan Reyes’ ALS Story
Devastated yet relieved; two opposing perspectives. That is what I experienced when diagnosed with ALS. Devastated due to ALS being terminal with no effective treatments. Relieved to know what was causing the strange symptoms I had been experiencing. Knowing allowed our family to prepare and plan our new difficult future.
After digesting the mass of information hurled at us, we came to terms with our new reality. Being a veteran, it was a shock to learn veterans are twice as likely to develop ALS. This realization and meeting others fighting for change motivated me to become an advocate. Seven years later I am engaged in advocacy nationwide through multiple organizations. Having participated in several campaigns I’m proud of all the accomplishments of everyone involved.
As important as the above is for all afflicted by ALS, it is imperative to continue living fully. For this, I depend greatly on my family, my wife, and four children. Recently Meg, my wife, and I decided to follow through on our retirement bucket list of traveling in an accessible RV motor home. However, ALS has introduced us to many incredible humans, with this in mind Meg and I are meeting them on our travels. We purchased our RV in May with 6K miles, and we have logged over 16K since then! The trips have been phenomenal in so many ways; the souls that have touched our hearts most of all. Never let the life you are given get in the way of LIVING!
MSgt (ret) USAF
You can donate to ALS TDI this #GivingTuesday, and help on our mission to #EndALS, here: https://www.als.net/donate/givingtuesday/?soc=GT707
Jenny Nicolelli’s ALS Story
My experience with ALS began when I was in 5th grade. My grandmother, Barbara Barrows, was diagnosed with ALS and died the summer before I entered 6th grade. Born and raised in Vermont, my grandma was an excellent golfer and never left the house looking anything less than very fashionable.
My uncle, Steve Barrows, died from ALS in the fall of 2021. He was the youngest of three and had suffered the death of his wife a few months prior. He loved music and spent much of his adult life working part-time as a DJ. Having no children of his own, he was always kind and generous to all the "kids" in the family.
My journey as a runner began in high school. I started out as a shy 15-year-old with a pair of tennis sneakers, Soffe shorts, and a half-broken Discman who could hardly run a mile without stopping. Over the years, I evolved into a middle- and long-distance runner. I recently completed the TCS New York City Marathon, my fourth ever marathon, but the first time running for something more than myself.
I am very grateful to have the opportunity to raise money and run to honor the memories of my grandmother and uncle. More importantly, I raise money for the future of this disease. ALS killed two members of my family. It is highly likely that more members of the Barrows family tree will be impacted by ALS - my dad, aunt, sister, cousins, sister's child, or even myself. We want nothing more than to see an end to ALS.
You can donate to ALS TDI this #GivingTuesday in memory of Barbara and Steve, and help on our mission to #EndALS here: https://www.als.net/donate/givingtuesday/?soc=GT708
Hallie's ALS Story
I remember when I was in fourth grade I was selected as student of the week. We received a questionnaire, and one of the questions was “Who is your hero?” Without hesitation, I wrote my dad because he was a veteran. Now, I realize that my dad was my hero for everything else in my life. He answered every call, gave the best advice, and supported me in every choice I made. I have looked up to my dad in each moment of my life. He was relentlessly supportive, kind, and loving. He dedicated his life to the service of his country, and to his children.
When my dad started experiencing symptoms of ALS, he was dismissed, told he was getting old, and that physical therapy would fix the problem. I watched him go from being able to do everyday tasks on his own, to needing constant assistance. My dad was a very stubborn and independent man, and he constantly said that losing his independence and ability to care for himself was the hardest part of ALS.
My dad’s pain was so severe, he went into atrial fibrillation twice, which resulted in two cardioversions. He was then placed in a rehabilitation facility in November 2021.
After months in the facility, we made the decision to admit my dad to the VA Emergency Department. The next appointment to see a neurologist was months away and he needed to be seen sooner than that. We knew taking him to the hospital would immediately result in a neurology consult. He was tested for ALS and was diagnosed on his third day there. He was then sent back to the rehabilitation facility, where he passed less than two weeks after his diagnosis.
ALS put my dad in an insufferable amount of pain, took away his independence, and robbed him of so many other milestones that my brothers and I will not get to share with him. I carry the grief from my dad to every table I come to. I remember him as the man who raised four kids to be just like him. I remember him being the neighbor always offering a helping hand. I remember him being the man who had three dogs and counting because he just could not tell his kids no when they asked. I remember him as my dad, my hero.
The ALS Therapy Development Institute is so crucial in helping prevent other children like my brothers and me from losing their parents. I am so grateful for their work and confident in their mission to develop treatments for those with ALS.
You can donate to ALS TDI this #GivingTuesday and help on our mission to #EndALS, here https://www.als.net/donate/givingtuesday/?soc=GT709
MaryEllen Woodman’s ALS Story
I vividly remember the phone call in 2007 from my sister sharing that her oldest son, RJ, was diagnosed with Lou Gehrig's Disease. I was slightly familiar with the disease by name and with enough knowledge to know what I was hearing was NOT good. Like most or all families the mind kicks into gear with the immediate how do we stop this? Let the search for information begin!
In late 2008/early 2009 I learned about ALS TDI and subsequently the annual 3-day, 270-mile Tri-State Trek fundraising event from BOS-NY under the leadership, at the time, of Mat Mendel. Mat reached out to RJ and, as they say, "the rest is history". RJ enjoyed many numerous home visits from Mat coupled with discussions about TDI and the Trek. Up through 2009, the Tri-State Trek finish was in NY. Since 2010 the finish line has been in Greenwich CT, where RJ was a Police Sergeant.
I became a stalker of the ALS TDI Forum, an online opportunity to learn, ask questions, and engage in research discussions. RJ became aware of the research work of ALS TDI and got behind in supporting them 100%. He believed in the work, driven by passionate & knowledgeable scientists and equally passionate & knowledgeable staff that make up ALS TDI. If one were to do an internet search of RJ there will be many quotes expressed by him that research was most important for him, even if it did not happen in his lifetime. He did not want another family to go through what his family was experiencing. While many wanted to do fundraising for RJ & his daughter, he was razor focused on the importance of fundraising for ALS TDI research.
Over these many years since RJ's diagnosis (and passing), ALS TDI has stayed true to its mission to "discover and develop treatments for amyotrophic lateral sclerosis (ALS) as quickly as possible". When I learned about AT-1501 it solidified how right RJ was to stay committed to his belief in ALS TDI. To learn that AT-1501 (now known as Tegoprubart) has potential for both ALS and Alzheimer’s is phenomenal. Tegoprubart successfully completed Phase 2a clinical trial in humans this past May 2022.
The options available to RJ and thousands of others when he was diagnosed were slim to almost nothing. Today there are more choices both in research and technology to enhance the quality of life.
It is important to remain steadfast and support ALS TDI research. We must work together to #EndALS so that no others have an ALS diagnosis impact their life/lives.
You can donate to ALS TDI this #GivingTuesday in memory of Sgt. Roger A. Petrone, Jr, and help on our mission to #EndALS, here: https://www.als.net/donate/givingtuesday/?soc=GT710
Nate Methot’s ALS Story
I'm a stubbornly independent man (maybe that's redundant), or at least, I used to be. The old me, that is, the person I was before ALS, never wanted to ask anyone for anything. There’s freedom in living that way, a certainty in self-reliance.
If there’s one word that describes the difference between the wheelchair-using, lives-with-his-parents thirty-eight-year-old whose once-dominant right arm rests on his lap while he types with a mouse in his left hand, and the fun-loving running, hiking, skiing, golfing mid-twenties man he knows he used to be, it’s freedom. It’s not all of those impossible and impossibly distant actions, it’s the feeling that came from them. It’s not the bucket list actions, it’s that bucket list feeling.
I didn’t fully understand it at the time, but that’s why I fought so hard to hold on. That’s why I hid from the world and had one foot in denial. I’m not good at goodbyes, and it turns out, it’s hardest to say goodbye to yourself.
I don’t allow myself to feel too much hope about treatments, not because I don’t believe in the steady progress of science―I absolutely do―but because I’m worn out and numb. But I also know that it’s not about me; I’m just one person and there are countless others to be helped in the future. That’s why I support ALS TDI, the drug discovery engine dedicated solely to research to find treatments and a cure for ALS. And besides, I’m always up for a pleasant surprise.
You can donate to ALS TDI this #GivingTuesday in honor of Nate, and help on our mission to #EndALS, here https://www.als.net/donate/givingtuesday/?soc=GT711
Nate Methot is also the author of the recently published A Life Derailed: My Journey with ALS, a memoir, you can find it on Amazon Smile here.
Mandi Bailey’s ALS Story
Sometimes things happen that cause you to look at life in terms of “before” and “after.” ALS is one of those things. Before my stepdad’s diagnosis, I was unaware that three letters could change my entire life. After his diagnosis, nothing was ever the same again. The months in between were a blur of darkness and grief. I say months because we only had 12 months before we had to face the “after.” Shortly after my stepdad, Fred passed, I found ALS TDI on social media and scheduled a phone call to learn more. I took the call while I was waiting in my daughter's after school pickup line. I didn’t know what to expect, I certainly didn’t expect that call to be another one of those life-changing before and after moments…but that’s exactly what happened.
Supporting ALS TDI has always been an easy choice. Finding cures for this brutal disease is going to take every single one of us. We have our work cut out for us. I’ve helped advocate for legislation to help people living with ALS gain access to experimental drugs and treatments that may give them the chance to share more moments and make more memories with their loved ones. But now, the time has come to fund the science and fill the pathways we fought to open with promising drugs and therapies. That’s where ALS TDI comes in. As an organization that is dedicated to finding potential drugs and therapies for people living with ALS, they have a unique advantage. Their team spends every moment dedicated to finding cures and supporting the people and families they are fighting for.
There is no other organization like ALS TDI. They started in a basement with one family’s quest for a cure and have grown into a community of ALS warriors, scientists, and advocates dedicated to ending ALS. It is more than Petri dishes and microscopes; it is a community that understands and shows up for each other. After that first phone call, I looked at my car rider line buddies, smiled for the first time in a long time, and said, “I’m in.” Four years later, I look back and think of my life and a new set of before and afters…before I found ALS TDI, and after, when I found hope.
You can donate to ALS TDI this #GivingTuesday in memory of Fred, and help on our mission to #EndALS, here: https://www.als.net/donate/givingtuesday/?soc=GT712
Kevin and Tessa Geraghty’s ALS Story
My husband, Kevin, is the nicest guy you’ll ever meet. Affable, funny, and quiet to strangers, but the life of the party to friends and family. As are all people with ALS, he is the last person in my world to deserve this diagnosis.
We have been together for over 10 years and married for over 5. At the risk of sounding cliché, we are actually best friends. We have traveled all over the world, golfed at the most beautiful courses in the country, built a home together, and we laugh together every single day.
After two years of trying to have a baby unsuccessfully, we underwent In Vitro Fertilization. We pre-paid for three full rounds given our ages (late 30s), and round one last October was unsuccessful in retrieving any viable embryos. Kevin was diagnosed on January 6th, 2022, five days before my second round was supposed to start.
That is what ALS has taken from us…Kevin will never get to be the dad he dreamed of being. We all dream of what building a family looks like, and ALS shatters that image leaving us with a new view of reality. We successfully retrieved two healthy baby boy embryos in May 2022 before Kevin started a stem cell trial. We are now faced with a different type of parenting should we choose to move forward. Kevin may never be able to hold him or play catch with him. Our son may never hear Kevin’s boisterous voice or laugh. I don’t want people to think we aren’t grateful, but I want them to know he fully understands that this will never be “normal.”
We want to save others from the hard decisions accompanied by an ALS diagnosis. That is why we’ve become involved with ALS-TDI. We want to end this nightmare and find ways to prevent, cure, or halt the progression of ALS, so they don’t have to make these decisions, they don’t have to say goodbye too early, and they don’t have to live in fear of what they will be able to do tomorrow, next week, next month, or next year.
You can donate to ALS TDI this #GivingTuesday in honor of Kevin, and help on our mission to #EndALS, here: https://www.als.net/donate/givingtuesday/?soc=GT713
Josh Berry's ALS Story
With the holidays being right around the corner, family and friends begin to anticipate the cherished traditions and time with family and friends. And the Berry family would follow-suit every year. We would look forward to times of laughs, board games (Dad could never hang with the family competition in Monopoly - Yes, I’m starting to realize he was probably just taking it easy on his son growing up… but we’ll pretend that wasn’t the case), to football games in the yard, to holiday movies around the fire and so much more. Always with emphasis on bringing the family closer together and spreading joy. Little did we know that Christmas of 2014 was the last of the “normal” holidays for us.
Everything started back on my high school senior year spring break in 2015. For our portage friend group (family friends and my personal friends) this was a very anticipated trip that we all had been looking forward to for years now.
It was the morning of the zipline excursion where all the kids and parents would get together and charter to a nearby zipline course in Puerto Vallarta, Mexico. It was that morning when my mother and father went on their morning walk on the beach that my dad noticed the first sign of ALS. He was having an unexplainable limp that was taking place and both him and my mother had no idea what was going on. My mom and dad made the decision to stay back and not go on the excursion. This was extremely off-brand for my father, and I knew something was seriously wrong for my parents not to join… but nobody knew what.
When this time of the year approaches - the memories of the cherished times become extremely vibrant. My favorite Christmas memory with my father would have to come from the year our family went to Iowa to spend Christmas with his side of the family. I remember it like it was yesterday; my father and I were playing catch with a frisbee on the fairway of the golf hole that was in the backyard of the house we were staying at. This was not a tradition, nor at the time did I know how much the time we were spending playing catch would be valued one day. Not a worry in the world, fresh snowflakes falling onto the short grass, a light breeze, and a father and his son enjoying the moment.
The Jimbo Foundation and I decided to partner with ALS TDI and work towards #EndingALS for many reasons. The first being the mission they are spearheading could not align more with my personal mission and mission of The Jimbo Foundation, discovering and developing effective treatments for ALS. The second, to stay connected with the community of amazing people that have been affected by ALS or simply have a passion to fight this disease. Please consider joining our community and supporting the fight that ALS TDI is leading to find the cure!!
You can donate to ALS TDI this #GivingTuesday in memory of Jimbo, and help on our mission to #EndALS, here: https://www.als.net/donate/givingtuesday/?soc=GT714
Mike Harrington’s ALS Story
I’m not supposed to be here.
That was the only thought going through my head on a sunny, early June afternoon as I sat in a neurologist’s office waiting for my EMG and nerve conduction test results. I was 32 years old. I went to the gym every day. After two years of trying, my wife Michelle and I had just found out that December would bring us a baby girl.
None of that mattered. The neurologist came into the office and confirmed my fear; it was ALS. At first, I didn’t believe it – it just couldn’t be possible. More tests by ALS specialists at Columbia and Beth Israel confirmed the diagnosis… Now I had to go through the process of telling my family and friends, and the tears FLOWED. My entire life plan was shattered by those three letters. Would I get to see my daughter go to kindergarten? Would I get to travel with Michelle to all the amazing places we’d planned to go? It was all up in the air.
That was 11 years ago. ALS life expectancy is 3-5 years from diagnosis.
I’m not supposed to be here.
There is so much we don’t know about ALS. While I can’t really speak and using my arms and hands has become difficult, I’m still able to walk and play with my now 10-year-old daughter and my 8-year-old son. Why have I been so lucky?
This disease is so different for everyone it afflicts. That’s why the research being done at ALS TDI is so important. I’ve been in this fight longer than most, so I’ve gotten to see real progress; I truly believe that we’re on the verge of something huge.
I’ve changed my hope from kindergarten to grandkids; please consider donating to ALS TDI this giving Tuesday and help me make that a reality.
You can donate to ALS TDI this #GivingTuesday in honor of Mike and help on our mission to #EndALS, here https://www.als.net/donate/givingtuesday/?soc=GT716
Jake Paust’s ALS Story
My father’s favorite quote after being diagnosed with ALS was “Get busy living or get busy dying” Andy Dufresne, Shawshank Redemption.
Like many young boys growing up, my dad was my hero, there wasn't a thing my father couldn't fix. My dad, Tim, built our family's home, our cabin in Wisconsin, he restored a 1974 Jeep and even refurbished a snowmobile. To say my dad liked to stay busy is an understatement. Along with his many side projects, he was a very involved father. He coached my brother and me in football, he never missed a cheerleading competition for my sister, and he co-founded the youth lacrosse league in our hometown. My dad was a man of few words and believed that actions spoke louder, being involved was his way of showing that he loved us.
My father was diagnosed with ALS when I was a senior in high school. I didn't know much about the disease or what this meant for our family. I was in the middle of deciding where to go to college and was unsure if I should accept an offer to play college lacrosse at the University of Tampa or stay local to Chicago to help take care of him. As I struggled with what to do next, my father simply said, “I don't want this to stop you from playing college lacrosse, you’ve wanted that for a long time.” ALS not only impacts the individual but the whole family and the decisions they make for their future.
While in school I frequently flew back home to help my family with caregiving during my school breaks and long weekends. As his ALS progressed, it took away my father’s ability to spend time with his family doing the activities we had growing up. Stretching my father while we talked about lacrosse, my college classes, or football became a new way to spend quality time together. I would become his go-to person to help transfer him from his bed to his chair. This experience inspired my desire to pursue a career in healthcare and help those diagnosed with ALS. My father passed away in the spring of 2014 after a 2-year battle with ALS.
After my father passed, I attended Concordia University in St Paul, MN to obtain my Doctorate in Physical Therapy. I wanted to honor my father’s belief that actions speak louder than words by creating an ALS Caregiver course. The goal was to take what I’ve learned from school and my personal experience with ALS to create a tool that anyone can use to help care for a loved one living with ALS. I was able to honor this goal by starting my own practice, Paust Physical Therapy, and Sports Performance, which allowed me to create my ALS Caregiver course.
While I am honored to help people living with ALS now, I know that research at ALS TDI is what will ultimately end this disease. With their commitment to 24/7 ALS research, my family found not only an incredibly dedicated team at ALS TDI to support but friends that feel like family. They introduced us to other community members to help us navigate life without my dad and offered unique, meaningful, and fun experiences to help fundraise for treatments and cures. My mom and I have been attending the ALS TDI White Coat Affair for the past 7 years, and she has participated in the Tri-State Trek and other fundraisers. I'm a member of the ALS TDI Young Faces of ALS and have supported Ales for ALS in Minneapolis. So, in honor of my dad, let your actions speak louder than words and donate this Giving Tuesday to ALS TDI.
You can donate to ALS TDI this #GivingTuesday in memory of Tim, and help on our mission to #EndALS, here: https://www.als.net/donate/givingtuesday/?soc=GT717
You can learn more about his ALS Caregiver course on his website here. Use discount code ALSTDI for a discount on the course.
Kevin Robinson’s ALS Story
Like many, Christmas is a special time for my family. Despite our three sons being in their 30s now, our day begins early. I love to watch our sons, still dressed in pajamas, take the presents from under the tree, designate a place for each family member, and place the presents in those spots. Watching grown men still enjoying a tradition that goes back to their childhood fills my heart.
Unfortunately, the last 5 years have been a bit tough for us. Beginning with a diagnosis of terminal cancer for my wife’s father in 2018, the premature birth of our first grandson, Charlie (a.k.a. Dat Guy), in 2019 leading to his first Christmas in the NICU (neonatal intensive care unit), and this being our second year since my diagnosis of bulbar-onset ALS, it would be easy to lose the shine of the holiday season. However, I am determined to not let this journey we are on detract from the joy the holiday season brings.
Dat Guy was born 14 weeks prematurely in the Fall of 2019. My daughter-in-law fought so hard to keep him in the womb if she could. Eventually, preeclampsia won, and he was delivered, weighing in at 1 pound, 13 ounces. Daily visits from family to stand guard over him in the NICU followed. By Christmas he was meeting or exceeding most milestones. While sitting with him in my arms on Christmas Day in the NICU, I marveled at his toughness. As he slept on my chest, I watched the NICU nurses and physicians go about their care duties. To me they were amazing souls, away from their loved ones on Christmas Day, doing everything in their power to sustain life for vulnerable people. Writing this three years later, the lump in my throat still returns when I think of those dedicated healthcare persons.
In July 2021, one year after retiring from 41 years of active-duty service in the U.S. Navy, I received my ALS diagnosis. Like every other ALS family, the news was devastating. Plans of happy times in retirement suddenly seemed unattainable. My relationship with Dat Guy being as close as it was led to many days of sadness at the thought that he might never remember me. The future seemed hopeless as we, like other ALS families, learned of the dearth of available drugs and therapies to fight this disease. During the lowest points my family, especially my wife and daughter-in-law, would tell me, “You need to fight for Charlie.”
By Charlie’s second birthday a few months after my diagnosis, I began to understand the ALS landscape better. Looking at the history of ALS and the current lack of weapons to fight it, it is easy to see the hopeless vision of the disease. However, as I learned more and met others in the community, I began to see glimmers of hope. Learning about drugs/therapies in the pipeline, amazing clinicians, researchers, and inspiring patient advocates all fighting to slow and eventually cure this beast, helped me change my attitude. Hope had begun to shine through. My mantra was no longer “I need to fight for Charlie.” Instead, my motivation comes from my belief that “I need to fight like Charlie.” My fight is no longer just about me. My fight is for all families touched by this horrific disease.
As Giving Tuesday and the holiday season approach, I feel blessed to know many extraordinary people committed to this fight. Among those helping families like mine is the team at ALS TDI. Dedicated to discovering treatments for ALS, their mission resonates with me given my lifetime of military service. As a non-profit dedicated solely to ALS drug discovery, they rely on the generosity of people to fund this important work. The drugs identified/developed by ALS TDI have the potential to not only help people living with ALS today but more importantly is the fact it will help others should they ever face this beast. I proudly ask all who read this to donate to this amazing organization.
You can donate to ALS TDI this #GivingTuesday in honor of Kevin, and help on our mission to #EndALS, here: https://www.als.net/donate/givingtuesday/?soc=GT718
Alex Cavaliere’s ALS Story
I never imagined that my life would be derailed by an ALS diagnosis – let alone at the age of 27. My name is Alex, and I'm asking you to join me in helping to end ALS.
In 2019, before I received that fateful diagnosis, I felt like I was in my prime. My career was thriving, I was engaged to the man I love, and we had plans to start a family. ALS changed my plans for my career and family – and while I am so lucky to have a wonderful husband, it's hard not to think about the dreams that I had to give up.
ALS takes so much, and that's why I want to help change the future for all of us with this disease. I know that to change our future, we need organizations like ALS TDI to continue ALS research.
You can donate to ALS TDI this #GivingTuesday in honor of Alex, and help on our mission to #EndALS, here: https://www.als.net/donate/givingtuesday/?soc=GT719
Deb’s ALS Story
My message is about change and never closing the door on the hope to find a cure for this horrific disease.
Virginia Black Hosmer - Age 47
I was only 13 years old when ALS became a part of my life. It was 1977 and I was staying with my grandparents. I overheard them talking about Grandma’s sister Ginny having the "creepy crawly disease." Back then ALS was called many odd names, including “consumption of the nerves.” Grandpa asked if this was the same disease Ginny’s great-grandmother died from years ago. Grandma said Ginny was losing her ability to swallow, and her skin was crawling as if bugs were underneath it. The “bugs” were what is now known as fasciculations, or muscle twitches, that are characteristic of ALS. I remember thinking, “Wow, Great-Aunt Ginny has bugs in her body, and I hope I never get that!” But we were not supposed to listen to adult conversations, so I never asked about the bugs. Ginny passed away three months later, and the door was closed on ALS.
Bonnie McQueen Haberly - Age 38
Little did we know the door would re-open in 1979. This time my Aunt Bonnie, Grandma’s daughter, was sick. She was a beautiful, 38-year-old, divorced, single mother. At the time her four children ranged in age from 11 to 17. We didn't know how to properly care for her, but my mom and grandma did the best they could. Bonnie’s primary caregiver became her 13-year-old son. My Dad nailed a wooden chair to a car creeper with rollers on it, and this contraption was her “wheelchair.” The scars Bonnie’s children endured from caring for their dying mother at such a young age have never healed. Bonnie passed away within five months of diagnosis. The door was closing on ALS again, but not before I asked a few questions. Grandma said there was this "muscle disease" that seemed to be in her family and caused muscles to crawl, and that there was nothing the doctors could do. She showed me the two pages of information the doctor had given her, and that was all she knew about this thing called ALS. Back then there was very little help for ALS patients and their families.
William “Bill” McQueen - Age 51
In December 1989, my dad, Grandma’s son, took a terrible fall down the icy front steps of his house. He believed this to be the onset of his ALS symptoms. He lost the ability to hunt and fish, which for him was a way of life. And in 1991, I lost my dad to ALS. He lived just 11 months from diagnosis. My mom developed creative methods to make it easier to care for my dad, as this was her third time facing ALS as a caregiver. But we still didn’t know how to get help for ALS families.
Dora Black McQueen - Age 79
In 1996, Grandma died of bulbar ALS, where she lost her speaking and swallowing abilities before limb function and suffered from dementia sometimes associated with the disease (FTD). In her last few months, she came to my home, and I cared for her with the help of my husband and mom. I learned so much from Grandma throughout my life and she was a very special lady. She always felt this disease was her fault. Upon researching our genealogy, I traced the disease through 13 generations of Grandma’s family to the early 1600s, discovering more than 20 additional family members who suffered from what we now call ALS. Once again with Grandma’s illness, we held questions but no answers. And living in a very rural area, the doctors were unable to offer us additional resources. We cared for Grandma to the best of our abilities then closed the door again. Never in our wildest dreams did we think ALS would keep reappearing in our lives. I pondered how very little had changed from 1977 to 1996 and wondered how much one family could suffer. Her autopsy confirmed ALS with FTD.
Rhonda McQueen Burrous - Age 38
The hardest part is to share the story of my little sister Rhonda. She was 38 and married with children ages 8 and 11 when ALS took her life. Sadly, my mom was a pro at this by now and she became Rhonda's 24/7 caregiver for seven months. Rhonda had a vibrant personality and was always the life of the party. After two misdiagnoses, Rhonda thought she'd be ok—after all, she’d been cleared by a certified ALS clinic. She thought they had to be right that her symptoms weren’t ALS. But upon seeking a third opinion, she was told it was ALS and given about six months to live. She lost her fight five short months later in January 2007. She suffered through her illness without proper medical or handicapped equipment. During her last four months, Rhonda never left her house, as she didn't have a wheelchair van or an entryway equipped with ramps. But Rhonda did not leave us without making a change. She had DNA testing done to identify our family’s ALS gene mutation—SOD1 A4V. This gave us a marker for researchers to test other family members and opened the door to hope.
Debra McQueen Quinn – Age 50, living with familial ALS
I began this fight in October 2009. It took me three months to tell my mom she would lose another child to ALS. I had two wonderful co-workers who helped me fling the door wide open and searching for more information. Little did we know we would embark upon a journey that would find new friendships and much love and encouragement within the ALS community. We became involved and wanted to make a change. I've brought awareness about ALS into my local community and have reached out to countless families I meet online who are just learning about ALS for the first time. Other dedicated advocates and I raise money for rural patient needs in Western New York through our nonprofit Hearts for ALS NY. I will not settle to keep the door closed and be quiet about this disease. It is hard, but I am the voice for my children, nieces, nephews, and cousins, all of who have a 50 percent chance of inheriting ALS. For them—for all families—we must seek change, as each door we walk through may lead us to the cure.
David McQueen – Age 46
David started to show symptoms of ALS in June 2010. He was showing signs of drop foot in his left foot. In 2014, he said he was having fasciculations in his knee. David was diagnosed in October 2016 with limb-onset ALS. He passed away on August 18, 2017.
Ray Haberly – Age 54
In July 2015, Ray fell and hurt his right arm & shoulder. He believed this was the onset start of his ALS, although he was having signs of ALS in 2014 but was unsure what the symptoms were. In August 2016, Ray was diagnosed with ALS, showing signs of bulbar ALS, and losing his arms and hands. As progression continued, Ray lost the use of both his arms/hands, lost his voice, and had swallowing issues. He could still walk prior to his death. We lost Ray on October 16, 2017.
We have two family members who tested positive for the ALS gene mutation. This means that they will have ALS at some point in their lives if something else doesn’t harm them first. We still have many that hold the 50/50 fear and have not been tested. The door is open wider than ever to talk about this beast called ALS. The ALS Community has some promising clinical trials, increasingly more knowledgeable healthcare providers, improving respite care, more diverse advocacy and awareness organizations, and a robust social media family of support. I encourage you to join us as we open the door to the changes that are needed to stop ALS. Thank you for reading my ALS story.
You can donate to ALS TDI this #GivingTuesday in honor of Deb and those in her family who have fought and continue to fight ALS, and help on our mission to #EndALS, here: https://www.als.net/donate/givingtuesday/?soc=GT720
Lauren’s ALS Story
Everyone likes to say that their family is special and unique in their own quirky, fun, and endearing ways. Mine, however, I prefer to say is resilient, strong, and closer than I could ever imagine in part to our journey with familial ALS. Before I was born, we lost my Grandfather Bill and Great Grandmother Dora before him, setting the stage for my upbringing and my cousins being increasingly open and informed about the ways in which ALS presents and has impacted our family members. As we all got older, my cousins lost their mother, Rhonda. My Aunt Deb received her diagnosis in 2010, and we are so lucky to have her still as a patient and advocate for our area. Then my Second Cousin Ray passed. And finally, my dad David lost his fight as well in 2017.
I began my own journey at the age of 11 as I understood what it meant to possibly be a carrier of ALS and began to frame my life around the endless possibilities from a young age. Learning of the cousins that tested positive and negative for the gene mutation and seeing how each of us continued our fight for a cure with the knowledge of which of us was fortunate to support from the sidelines. I am one of the lucky ones that have tested negative for the gene. I continue to thank ALS TDI for the work they do year after year for my family and every individual with an ALS diagnosis. I continue to look towards the future with optimism that one day there will be bright news through the darkest times. My family has learned how to see the best in every situation and live our lives without fear or barriers. We’ve been a part of the ALS TDI family for the last ten years and I’m so thankful for their support.
You can donate to ALS TDI this #GivingTuesday in honor of Lauren’s family members who have fought and continue to fight ALS, and help on our mission to #EndALS, here: https://www.als.net/donate/givingtuesday/?soc=GT720