Giving Tuesday 2020
Every year on GivingTuesday we highlight stories from different people in our community who have been affected by ALS. This year, we are sharing stories from children of people fighting or who have fought ALS.
Read their individual stories below, and donate to ALS TDI today to support ALS research.
To put things simply, my dad was the best. As my dad’s only daughter, I tend to believe I had a special bond with him. He was my biggest fan on the sidelines of every sport, bought me any piece of soccer or softball equipment I wanted, and even attended most of the high school basketball games just to watch me cheer. My dad was officially diagnosed with ALS during the winter of 2009, I was a junior in high school. At that time, I’d never even heard of the disease that would shatter my world and carry lifelong impacts. Unfortunately, my dad’s condition deteriorated quickly.
Every morning of my senior year of high school I listened as the home nurse got him ready for the day. When he would eventually move down the hall towards the stairs, his wheelchair would back up to my bedroom doorway as he neared the top. I’d say good morning to my dad, good morning to the nurse and I’d continue getting ready for my day as the stairglide took him downstairs. My dad passed away from ALS before I graduated high school and I went to the prom on the day of his funeral.
During my sophomore year of college, I made the decision to follow in my dad’s footsteps and become a lawyer. I took the LSAT, applied to law school and eventually found myself in Boston. It is no mere coincidence to me that I then also found myself in the same city as ALS-TDI. At that time, I thought the world of ALS was behind me and I had little interest in ever thinking about the worst thing that had ever happened to me. However, when I did open up to it, I discovered a network of amazing people, a family of sorts, all working together to end the horrible disease known as ALS.
Despite knowing that I have undoubtedly made my dad proud, I find myself more and more wishing I could talk to him, even just one more time. I want to tell him about my job and complain to him about bosses and clients and everyday stuff that I know he would understand. I want to talk to him about the passion he found in the law, and tailor my career to ensure I get as much fulfillment as he did out of this industry. More than anything, I just want to tell him about my day.
ALS TDI has remained and always will be an important part of my life. Their mission to find a cure for ALS will ensure that in the future kids won’t miss important (or unimportant) conversations with anyone in their life because of ALS. I hope you will consider donating this Giving Tuesday to #EndALS. ALS is not an incurable disease. It is an underfunded one.
You can donate to ALS TDI this #GivingTuesday, and help on our mission to #EndALS, here: https://www.als.net/donate/givingtuesday/?soc=GT510
My dad Tim was just a genuine, friendly, faithful and joyful man. ALS took that joy from us too soon, but my dad had hope that the work of groups like ALS TDI could someday bring healing to others like him suffering from this disease.
Tim was diagnosed in 2012 and our family cared for him at home until he died in early 2015. During that time, we were all called to new depths of love by standing by him in his suffering. I gained a new appreciation for the way our Christian faith speaks of Christ’s gift on the cross. An organization based near us in Ohio called Playing Hardball Against ALS (PHAALS) offered my dad not only assistance but also hope and community by bringing awareness to the disease through events at high school baseball games. When Tim heard about the Precision Medicine study being done at ALS TDI, he was eager to be involved and PHAALS offered to support us taking him to Boston.
Despite the challenge and pains sure to come with such a long journey, my dad insisted that we drive him the 800 miles to ALS TDI so that he could participate in the study at their lab. He knew that ALS TDI’s research would unlikely bring any benefit in time to help him, but he believed in the hope for others that their work could provide. The challenge for the rest of us was that this man we loved so much, who had carried us on his shoulders as children, would need us to carry him for this journey.
This picture is one of my all-time favorites! We arrived at our hotel in Boston late and exhausted to the point of delirium. However, my frail and entirely paralyzed dad, who had slept in a recliner for months (in part because transferring was easier of all of us) INSISTED we get him into the hotel bed (…like, seriously, I don’t care if it’s gonna be super difficult, we’re doing this…). My brother and I somehow managed the challenging transfer and with his arms still hanging weakly around our necks our exhaustion spontaneously turned into laughter. He only stayed there about five minutes, but I’ll never forget his joy at that little victory. The next day he got to participate in the study.
He believed in doing what he could to support ALS TDI and other organizations like PHAALS in their efforts to heal and comfort. My family grew in love as we joined him on his journey. Please consider joining other with this disease on their journeys by supporting research that gives hope to so many.
You can donate to ALS TDI this #GivingTuesday, and help on our mission to #EndALS, here: www.als.net/donate/givingtuesday/?soc=GT511
The Haberstroh Kids
To understand why our Mom, Patty Haberstroh, chose to support ALS TDI, you have to know where she has worked every day since we were little, annoying kids. Mom has spent the last two decades as a social worker at our town’s Human Services department. Emphasis on “Human.”
She has made it her mission in life to lift human beings in our community from challenging circumstances. When she met her ALS challenge, she turned her friend who worked at the town, Nancy, who happened to be in her late-stages of ALS. Mom wanted to know, if her kids came up with a fundraiser (#ALSPepperChallenge), which foundation or charity should we support? Her friend said without hesitation, “ALS TDI.” Nancy told Mom that ALS TDI treated her like she was a human, not as a statistic.
After one phone call with the ALS TDI team, my Mom knew Nancy was spot-on. Mere seconds into their first conversation, the folks at ALS TDI made Mom buckle over with laughter, fill with hope and brim with enthusiasm. ALS TDI’s motto, “ALS is not an incurable disease; it is an underfunded one” really stuck with us. They reached her. They made her feel empowered. They made her feel strong. They made her feel alive.
Since then, we have attended the White Coat Affair on many occasions, joined the Spirit Squad at the Tri State Trek, connected with the science at the ALS Summit, played virtual trivia, and held Pepper Parties. This is our family. Our community. We want to do our part to build it up, and keep it strong.
Mom has spent years trying to do that for her community. Us four children and countless others are the product of Mom’s selfless human spirit. ALS tries to knock you down but you need others to lift you back up. Why ALS TDI? Because they get it. It takes science *and* service. They make you feel like family.
-The Haberstroh Kids (Chuck, Steve, Tom and Kim)
You can donate to ALS TDI this #GivingTuesday, and help on our mission to #EndALS, here: www.als.net/donate/givingtuesday/?soc=GT512
My name is Emma French and I am a 12-year-old girl. My mom, Kim French, was diagnosed with ALS in 2018. Ever since then, our lifestyle has changed dramatically. In the summer of 2018, me and my sister, Elizabeth, went to a week-long summer camp in Indiana. We had such a great time there but there was also a special place for me and her to go for one of our activities. At this camp we went to a cabin and we met other people whose family members of friends had to live with ALS. It was a really fun time but while I was there I also learned how to make friendship bracelets.
A couple months after the camp I decided I was going to raise money for an ALS cure. I thought for a while on how I was going to do this and finally came up with an idea. I was going to make bracelets and sell them. Over time I sold many and learned new ways to make them. It did get stressful at times and I have taken a break for a little bit but I plan on continuing to make them. In 2019 I made a $500 donation to the ALS Association and another to ALS TDI in 2019 and I would love to make another, bigger donation this year.
If you want to help or just want a pretty bracelet, please check out my Facebook page “Bracelets For A Cure By Emma.” This would mean so much and I hope you enjoyed my story. Let’s continue the fight.
You can donate to ALS TDI this #GivingTuesday, and help on our mission to #EndALS, here: www.als.net/donate/givingtuesday/?soc=GT513
Molly Conners Noe
The death of my mom is still surreal. As a little girl I would worry about what if something ever was to happen to my mom?
On November 21, 2019 our mom fell in Seattle. I was working on a film in Ukraine at the time and I woke up to an email from my sister with the subject line “Mom”. I remember my heart sinking seeing the subject line and opened the email… “Mom was walking tonight and tripped on the sidewalk…”
It was too early to call them in Seattle so I emailed my mom…. “Are you ok?! Kati wrote to me and told me you fell? Maybe you should see if it’s your depth perception? I hope you are ok?! Call me if you feel up to it and don’t do any work! I love you xoxox get some rest! Xxxx”
From that day, my mom was seen by a series of doctors and neurologists that couldn’t figure out what was wrong with her. We started to see a drastic decline in her movement and speech at the end of January 2020. My mom was so intertwined with my life, helping raise our children, helping me start my production company Phiphen Pictures in 2015. We spoke so many times a day and I didn’t notice any cognitive mistakes or any difficulty when she was working. In March when COVID-19 hit the states, it made matters so much harder for her to be seen by doctors in person. Some of the visits being telehealth appointments. She always reassured us that she was ok and not to worry about her but by this point we knew our mom wasn’t acting like our mom.
After so many visits to specialists in Albany, NY, my sister got an appointment in Boston at Mass General Hospital. On August 4th, it was there that a doctor went out on a limb to say he “was quite certain this was bulbar ALS,” but he wanted to repeat the EMG on October 7th to confirm. It was a rapid succession of having to take grief daily, while trying to catch up with her treatment. My mom never made it to the second EMG, she died on September 15th, only six weeks after her diagnosis.
We never even got to go through all of the stages of grief of her being diagnosed with such a horrific disease. She didn’t even get to tell all of her family, friends, and co-workers she had this diagnosis. She didn’t get to say goodbye to all she loved. It was a horrifically fast death and something I am still processing daily. I am grateful my mom didn’t suffer for too long but there is so much I wanted to tell her and experience with her still. She was my best friend and fiercest supporter of me and our family.
In the short six weeks of finding out her diagnosis, we got so much support and help from the ALS community. It has been beyond inspiring and made me want to do more, be a part of finding a cure. I feel lucky that we got to be with my mom for her final days and be with her when she died. On my mom’s death bed, I told her she was the best part of me and that I would avenge her death and try to be a part of the solution of finding a cure for ALS. I can hear her laugh and see her smile perfectly in my head. I have to hold on to that in the darkest moments.
She is the best part of me, and I will use her strength to help the fight to find a cure for ALS!
You can donate to ALS TDI this #GivingTuesday, and help on our mission to #EndALS, here: www.als.net/donate/givingtuesday/?soc=GT516
Sinnott Siblings- Matthew, Patrick, Stephen, and Kathleen
Our family’s ALS journey began in January of 2018. We remember the day that our dad was officially diagnosed with ALS all too well- it completely changed our lives. It was shocking, sad, and scary, and it absolutely rocked our world. We mention “journey,” because that’s what the last three years have been. We are the Sinnott Siblings- Matthew (33), Patrick (30), Stephen (28), and Kathleen (26), and we will continue to fight against ALS to find a cure for this cruel disease.
Prior to his diagnosis, our dad was a successful colon surgeon who loved nothing more than taking care of his patients- switching from doctor to patient was not easy. However, he promised to do whatever he physically could to fight this disease. We are proud to say he has not given up on that promise yet.
The first few months after our dad’s diagnosis were spent “information gathering” – what is ALS? What causes it? What are the treatment options? Is there a cure? The more time we spent educating ourselves, the harder it was to accept.
Given that there is no cure, our mom quickly became our rock, and tirelessly researched the best treatment options for our dad. As a family, we began to travel the world, experimenting with different treatments involving stem-cell therapy and other nerve strengthening techniques. The trips were long, sometimes months at a time, but they opened our eyes to the FDA’s process and the extreme efforts that are involved in getting drugs and other treatment options to market. This is one of the many reasons why we value all the work that ALS TDI does for ALS research.
The ALS TDI network is one of the first organizations that we reached out to after the initial diagnosis-they responded to us immediately and have been offering consistent support ever since. We have learned that ALS TDI is such a vital foundation in the fight against ALS- not only to find treatment options and ultimately a cure, but for the support of loved ones who are dealing with the same new realities. Having the direction and information from ALS TDI, mixed with their compassion and dedication, makes this group invaluable to everyone who is affected by this disease.
We can all agree that ALS is a devastating disease- it is often labeled as a taker because it “takes” pieces of our loved ones each day. In our experience so far, we have learned that the more it takes from our family, the more we receive elsewhere. And we know that to continue our fight, we must focus on what it has given to our family, rather than what it has taken. In the last three years, we have received an endless amount of support from our extended family, friends, and community. They have helped raise money for research funds by donating to ALS TDI, supporting the ALS Hope Foundation Galas, Walks and 5k’s, and traveling to Chicago to support the ALS Association Marathon team. So far, we are proud to say our community has raised over $200,000 for ALS research.
There is a quote that rings true to all who have been affected by ALS, but it especially reminds us of our dad:
“True strength lies in the ability to adapt.”
We are so proud of our dad for his resilience, his courage, and his strength. No matter how physically weak ALS makes him, we will always aim to be stronger than it. We are grateful to our parents for teaching us the importance of fighting this as a team- there is no other way to do it.
Thank you, ALS TDI, for all that you have done, and will continue to do in the fight against ALS.
You can donate to ALS TDI this #GivingTuesday, and help on our mission to #EndALS, here: www.als.net/donate/givingtuesday/?soc=GT517
Hey, I’m Genevieve “Gigi” Pollock, I'm 15 years old and my Dad was diagnosed with ALS when I was about 8. My dad has been active in the ALS community, and working with the science team at ALS TDI through the PMP ever since.
ALS didn’t seem like a very big deal to me at the time but I was quickly proven wrong. For a while, it affected me a ton but now I have come to realize it comes in a bundle package with tons of helpful and amazing people who have proved me very wrong.
Through this disease I have met some of the most amazing people in the world by far; my absolute favorites.
I started attending Hope Loves Company, a non-profit working to help all children and grandchildren of those with ALS through camps and other activities when I was 11. I have met so many amazing people there who I would not be the same person without. I have met one of my now greatest friends, Abby Pierce who I would have had no way of knowing otherwise. I have met some of my greatest role models; Cara Haggerty and Jodi O'Donnell-Ames. Jodi founded HLC and I absolutely adore her, without it, there's no way I would have the tools necessary to handle ALS that I do now. Cara lights up a room like nobody's business, she has the most wonderful energy about her. And if you know Ryan Matthews, I'm positive I have absolutely no reason to tell you why someone so amazing means so much to me.
I have met someone I call my “honorary grandparent” through this disease as well and I am so grateful to him in my life. Most importantly, I met myself. ALS has completely changed the way I see the world and the way I see people and I have gotten so, so much stronger as a person. I am so incredibly grateful for that. This disease sucks so much, genuinely. But I think in my situation at least, it gives a little more than it takes.
You can learn more about Hope Loves Company and how to get involved in Camp HLC here.
You can donate to ALS TDI this #GivingTuesday, and help on our mission to #EndALS, here: www.als.net/donate/givingtuesday/?soc=GT518
Meet Gabby, Katie, Katie, and Max four daughters of ALS warriors who continue to fight each day in the memory of their dads, these are their stories.
Beyond all of the critical research ALS TDI is doing, one of the greatest benefits of this organization has been the community. When my dad was dying of ALS and our family was struggling to care for him, enduring a grueling day to day caregiving process, trying to navigate the medical world, and confronting his inevitable death, the annual White Coat Affair felt like a tremendous relief. To be surrounded by hundreds of people who have been in your shoes and understand exactly what you’re going through was one of the greatest blessings ALS TDI gave us. As we became more regular partygoers, my network of ALS friends grew larger and stronger.
Of all the ALS TDI staff and supporters, three girls always stuck out to me every year- Katie Shambo, Katie Nicholson, and Max Menezes. I knew they had both lost their fathers to this disease, and as I was standing there with mine, I grappled to understand how they could function so easily, how they seemed so happy, how their lives looked so normal. I was terrified to lose my dad and the pain made my day-to-day existence miserable and confusing. But somehow these girls had managed to get through the same, and they seemed to be getting along well, if not stronger.
When dad finally passed in October 2017- these ladies were right there for me with words of understanding, compassion, and comfort. And having timed it quite nicely, dad passed exactly one week before the next gala, so our family was able to be surrounded by this community at the time we needed it the most. Lo and behold, Katie and Katie were there waiting for me with a gift and a bond I hadn’t quite anticipated. Jean jackets with the words “Dead Dads Club” written like a proud jersey name on the back- I was officially inaugurated into the club no one wants to be in. We laughed, we cried, and I embraced them for being two beacons of strength to show me that I could get through this, and I could get through it with a laugh.
If there’s one thing anyone in the ALS community has in common, it’s dark humor. The Dead Dads Club is the group that nobody wants to be in, and one that we hope to eradicate from the ALS world. But I am forever grateful for those girls for their solidarity, and to ALS TDI for bringing us all together. And as ALS TDI works to cure this disease, we’ll be here with open arms to those who find themselves in our shoes. That’s what this community does.
…That is what this community does. “Welcome to the club.” It’s how we greeted Gabby at the 2017 White Coat Affair. To an outsider, it probably sounds callous, but like Gabby said we knew exactly what she was going through. I wish we met another way. I wish I met everyone in the ALS community a different way. A world without those three letters. I couldn’t imagine not being a part of the ALS TDI community though – truly the greatest people who are all doing their part to end this monster of a disease.
My dad, Joe Shambo, was diagnosed with ALS in 1998 when I was 6 years old. Sixteen years prior to the Ice Bucket Challenge, not many people knew what ALS was. Part of me feels lucky I was a naïve adolescent when my dad was sick. I didn’t fully understand his prognosis. No, lucky isn’t the right word. Just because I was young it was still grueling. I was growing stronger and he was getting weaker. And the whole time his mind was sharp as ever. It isn’t fair. I do not want any more families to be affected.
My younger sister, Elizabeth, and I would say “daddy had bad hands”, man I wish that’s where it stopped. Every birthday, every 11:11, every coin toss I wished for a cure for ALS. My heart breaks for other families who are going through what Gabby, Katie, Max, and I did.
After my dad passed away in 2005, 13-year-old me knew I had to stay involved in raising funds and awareness for ALS. People often asked why my family and I stayed so involved. This is why. For the community. For Gabby Palko. For Katie Nicholson. For Max Menezes. The anniversaries, holidays, bike treks, walks, and other fundraisers wouldn’t be as easy without the ‘Dead Dads Club’ and ALS TDI. We are there to comfort each other when another ALS warrior passes.
“ALS isn't incurable, it's underfunded.” On this Giving Tuesday please support the TDI in this race against time. Any contribution, no matter the amount, will aid in finding a cure to end ALS.
In my eyes, ALS TDI is one of the most important organizations in the fight against ALS. They work tirelessly in their effort to find a cure. Along with that, they are always providing ways to bring pALS & their families together in the fight against ALS.
I was first introduced to Gabby in August 2014 when a friend sent me her Ice Bucket Challenge video via Facebook. I wanted to be her friend, as our Dads were both fighting the beast that is ALS & she seemed like a pretty awesome gal!
We exchanged messages but figured we’d never meet in person with me being all the way down in Virginia Beach and her living across the country.
I hadn’t been very involved with ALS TDI until after my Dad lost his six-year fight in October 2014, and man I did not know that I was missing out on so much! So, in 2015 I traveled up to Boston with my mum to attend the ALS TDI White Coat Affair Gala & who did I meet...Gabby!
That year I was also introduced to another young lady, Katie Shambo, not personally at first but when she spoke at the dinner that evening & once again, I thought, I want to be her friend!
The following June I made the trip back up to Boston to join Katie again in the Tri-State Trek. There I met Max, another amazing girl who lost her father to ALS.
Five years later, despite the three of us living thousands of miles apart, our girl gang is still going strong and we continue to support ALS TDI - virtually in 2020 - but hopefully again in person next year!
I first met Katie Shambo in 2017 at 5 am eating breakfast at Boston College when we rode on team America in the Tri-State Trek. I knew we were going to be friends for life and while we mentally and emotionally prepared for what is the best and hardest 3 days of the year, I took her under my wing and promised her mom Maureen, I would take great care of her (I still feel awful she fell off her bike and cracked her helmet – don’t worry she was okay!). That first day at rest-stop 1 she introduced me to Katie Nicholson, and we shared our mutual stories of us all losing our fathers to ALS, and the dead dads club was born. We rode that year like the three amigos and even though we had just met, it seemed like we had known each other our entire lives.
It’s not a club any of us want to be a part of, but through ALS TDI we’ve gained a sisterhood bonded in our greatest tragedy. ALS has bereaved us from milestone moments a daughter often shares with their father. None of us will have the honor of our Dads walking us down the aisle or sharing the father-daughter dance at our weddings, they will never hold our children or watch us flourish in adulthood. But beyond these life events, we miss having the daily support, encouragement, and security a Father provides.
I lost my father, Sylvan Menezes in June of 2012 after a 9-year battle with ALS. While this horrendous disease may have debilitated him physically, he continued to check things off his bucket list, travel extensively and live fearlessly. I have a quote on my desk which sums up my dad perfectly, it reads:
My Father didn’t tell me how to live: He lived and let me watch him do it
- Clarence Budington Kelland
It was his connection with the amazing Terri Handler and belief in the work at ALS TDI that gave him hope, one day there would be a cure and no other family would suffer a loss caused by Lou Gehrig’s Disease. We continue to support ALS TDI and hope you will contribute so this disease doesn’t steal any more birthdays, celebrations, and memories from children just like us.
You can donate to ALS TDI this #GivingTuesday, and help on our mission to #EndALS, here: