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.
My name is Mike. I am a 31-year-old neurologist, and in March of 2023, I was diagnosed with ALS. Choosing to share my recent ALS diagnosis is a big decision for me. I'm doing it because, amidst my challenges, I've found incredible warmth, kindness, and strength in this community.
Now, I'm reaching out to ask for your support in advancing ALS research.
If you are able, will you join me in supporting this crucial cause by making a donation today?
In the aftermath of this devastating diagnosis, I sought meaning in connecting with the ALS community. When I was introduced to the ALS Therapy Development Institute (ALS TDI) their commitment to research and the genuine warmth of the staff left a lasting impression on me.
With a tireless team working around the clock in their state-of-the-art lab, ALS TDI is committed to discovering and inventing treatments for everyone with ALS. Notably, their collaborative efforts extend beyond their lab, engaging in pioneering projects that drive the advancement of ALS research. A significant milestone this year was the launch of the ALS Research Collaborative (ARC), a groundbreaking initiative designed to expedite ALS research by gathering comprehensive data from individuals living with ALS and sharing it with researchers worldwide.
I recognize that ALS is complex, and I know that there might not be treatments available for me, but I want us all to have hope. The research strides that ALS TDI has made, and continues to make, give me hope.
Together, let's do all that we can to advance the research that is needed to end this disease.
Donate to ALS research in honor of Mike and Giving Tuesday here: www.als.net/donate/givingtuesday/?soc=GT805
I remember the day I got the invitation to attend the ALS Therapy Development Institute's Leadership Weekend. Knowing that I would get to meet so many incredible people from the ALS community during the weekend, I registered for the ALS TDI Summit and then set about to raise funds to support a table of people to join me at the White Coat Affair Gala. As someone living with ALS, I find strength and motivation through the connections I make with others who share this journey, so I was incredibly excited for the weekend.
The Leadership Weekend was an unforgettable experience. Meeting fellow para-athletes, advocates, and individuals who have dedicated their lives to raising awareness about ALS was inspiring. We shared stories, exchanged advice, and built a sense of camaraderie that transcended the challenges we faced. It was heartwarming to see the unity within our community, knowing that we are all working towards a common goal - finding a cure for ALS.
One of the highlights of the weekend was the science present at the ALS TDI Summit and getting to meet the brilliant scientists and researchers who are working to make progress in the fight against ALS. They shared their insights, discussed the importance of the data we contribute to the ALS Research Collaborative (ARC) study, and demonstrated their unwavering dedication to finding effective therapies. Their passion and commitment left a lasting impression on me.
This experience motivates me every day to continue pushing forward. Knowing that I am part of a community that is making a difference gives me a sense of purpose. As we approach Giving Tuesday, I am reminded of the generosity and unity that defines our ALS community. Together, we can support research, raise awareness, and work towards a future where ALS is no longer a devastating diagnosis
In my family, we joke that the “food panics” are genetic. For any holiday or celebration, we always end up with too much food for fear of running out or someone leaving hungry. I remember talking to my dad over the phone just before Thanksgiving one year. He told me he was preparing two turkeys, for 10 people.
My favorite holiday memory is preparing the stuffing the night before Thanksgiving with my dad. We had an old-fashioned hand-crank bread grinder and, even though I didn’t like stuffing then, I loved making the stuffing together. We would grind up bread, crackers, and other things we found in the cabinet. I loved running to the snack cabinet, grabbing a box or bag, and asking my dad, “What do you think?” And he would always reply with, “Sure, let’s try it.” Pretzels, potato chips, corn chips. The next day my dad and I would share a knowing smile when people would say, “Mmm, this stuffing is delicious.” I guess those expired saltine crackers and stale pretzels weren’t such a bad idea
My dad loved making the main dish for holidays, treating friends and family to dinner, and eating good food. ALS took that away from him – along with everything else. Just three months after his ALS diagnosis, my dad passed away. ALS is cruel and unrelenting. Sharing stories of my dad’s generosity and humor helps me keep his memory alive.
Days after my dad passed, I discovered the ALS Therapy Development Institute (ALS TDI) and their research to end ALS. This year I joined the ALS TDI team because I want to live in a world where people like my dad who are diagnosed with ALS are given a treatment plan, options, and hope.
In honor of my dad, have that second helping. Eat the dessert. Make a little too much food, just in case. And be generous. I hope that this Giving Tuesday you consider donating to ALS TDI because ALS TDI won’t stop until there are treatments for everyone with ALS.
Donate to ALS research in honor of Greg and Giving Tuesday here: https://www.als.net/donate/givingtuesday/?soc=GT807
In the summer of 2022, I noticed my flip-flop dragging as I walked. As a middle-aged woman, I had grown accustomed to brushing aside subtle changes in my body, dismissing them as mere quirks of aging. However, this seemingly insignificant drag gradually morphed into a limp that refused to be ignored. Something was undeniably wrong.
I started my quest for an answer in the fall and on April 20th, 2023, I received the devastating news that I had ALS. The world stopped
I did what the doctors told me NOT to do. I Googled ALS. I could feel my panic increasing as I read the words “fatal”, “2-5 years”, and “no cure”. I remember looking at images of people with ALS sitting in massive wheelchairs and all the people around them were smiling. Smiling! How could they be smiling— didn’t they know their loved one was going to die? I actually felt anger at the strangers I saw in the photos.
Then a very wise woman said to me, you still have much joy to have in your life. I have held onto that like a life preserver. It is true. I have so much joy still to be had. I find myself in a constant state of being grateful. There is an urgency to happiness. We prioritize joyful moments with family and friends. That has been the gift of ALS. Now the photos of my friends and family are filled with smiles because now I know there is joy—even with ALS
More importantly, there is also hope. I believe deep in my heart there will be a cure. That research will change ALS from a fatal disease to a chronic illness. I pray it will be in time for me.
In the meantime, my children have had a front-row seat to the beauty of humanity. We have seen an army of love and support. My kids have had an up-close view of the very best in people. Kindness, joy, and hope fill our days.
Donate to ALS research in honor of Della and Giving Tuesday here: https://www.als.net/donate/givingtuesday/?soc=GT808
Hello! I’m Patty and I’ve worked for Round Guys Brewing Company in Lansdale, PA for nine years. I am our events coordinator and representative, and I also work in the brewery itself. When I heard about Ales for ALS from Jeff Norman, who organizes Kennett Brewfest, I was super excited to learn more about it, because I lost my Dad to ALS on January 2, 2022. I talked with the owners and head brewer at Round Guys and told them I really want our brewery to participate. They have been behind me all the way through this venture and I’m so honored, grateful, and excited that we brewed this amazing beer for such a great organization. I got to name it, design the label, and help brew and can it. I know my Dad would be humbled and honored by it, as well as be proud of me.
If you knew my Dad, you loved him. He was so loving, sweet, caring, giving, funny, strong, resourceful, and smart. He loved my Mom with all his heart, and they were married for 56 years. He also loved us 3 kids, all his family, and had so many amazing friends. He was an authentic man of his faith and showed love and kindness to everyone.
He was a very hard worker. He grew up working on his family’s dairy farm, served in 1-W Service (he was a conscientious objector), took on some different jobs after 1-W Service and then worked as a crew leader for North Penn Water Authority. After that, he became a painting contractor and did that for over 30 years. My brother, sister and I all learned to paint from him and we’re all still painting contractors. He was the best boss ever, an excellent teacher, and all his clients loved his work.
My Dad loved music and played guitar. He was always there to help people in many ways. He helped my Mom cook and was our main cook when our family went to a cabin or camping. He loved the outdoors very much. I was very lucky to hike the Appalachian Trail many times with him and camp it as well. Us kids learned so many outdoor things from him, like canoeing. That’s what he’s doing in the picture on the label of the beer can! It’s a double dry-hopped DIPA coming in at 8%. It’s beautifully hazy with citrus and some tropical notes. My Dad was named Herb and people called him Herbie. That’s why the beer is named “Herbie’s Hazy”.
ALS is a terrible disease. It affects the nervous and muscular systems. My Dad had to use a trilogy machine and oxygen for his breathing. Things he once could do, could drop off as quickly as in one day. Eventually, he was fully bedridden and had to have full-time care. He became so weak that he couldn’t lift his hands. But he was still so strong, even to the end, in many ways. I miss my Dad so incredibly much. I’m so thankful to all who purchase Ales for ALS beer, donate money and purchase Ales for ALS merch as well that all in turn support ALS research at ALS TDI. Thank you ♥️
Donate to ALS research in honor of Herb and Giving Tuesday here: https://www.als.net/donate/givingtuesday/?soc=GT809
Our story started like many other stories do these days, online. I met Tavares in 2016 through a dating app when he was living in Southern California, and I was living in the San Francisco Bay Area. After a couple of phone conversations, I took the leap and flew down to meet this outgoing, fun-loving, and incredibly handsome man. I thought it would be a fun weekend, meet a cool guy, hopefully hit it off and see what happens. Well, that was the start of our journey together. Neither of us knew at that time that the journey would include a diagnosis of ALS and adjusting our lives around what that meant.
Fast forward to October of 2018. Tavares and I are living together, enjoying building a life with our two puppies in the SF Bay Area. He had been having issues with his hands and arms and over the previous year he went through the gamut of tests and different potential diagnoses, everything from a pinched nerve to multi-focal motor neuropathy. But it was an appointment with his neurologist in October where he was given the official diagnosis of ALS. That was the moment we can look back to that separates the “before” and the “after.”
In terms of an ALS diagnosis, we could be considered lucky. Although Tavares was losing the dexterity and use of his hands and arms, he could still walk, dance, eat, and breathe on his own. In the time before he started to lose the strength in his legs, we decided we were going to do as much as we could. We got married in June of 2020 (hello pandemic wedding), traveled when it was safe again to Hawaii, and found our new favorite spot in Puerto Vallarta. We went to Harry Potter World at Universal Studios in L.A. and went dancing in the clubs in SF as dance has always been an important part of his life. We also started doing what we could to raise awareness and money for ALS research.
ALS TDI has been who we have worked with the most as the money that goes to them goes to research and the invention of actual therapies and ways to fight ALS. Tavares works with the ALS Research Collaborative (ARC) through quarterly blood draws, monthly phone calls to test his speech/voice, quarterly surveys on his health and medications, and keeping his score up to date with the ALSFRS-R scoring system. He also raises awareness and funds through his vast social media network on Instagram, TikTok, Facebook, etc.
Our journey has now taken us to Indianapolis to be closer to family and the love and support that they bring to our lives. Tavares now uses a wheelchair to get around as the disease has progressed into his legs. We know there is a cure to be found so we have not and will not give up hope. That is why on this Giving Tuesday, I humbly ask that you give the gift of hope to Tavares, myself, and everyone fighting this cruel disease. ALS is not an incurable disease. It is an underfunded one.
Donate to ALS research in honor of Tavares and Giving Tuesday here: https://www.als.net/donate/givingtuesday/?soc=GT810
It's one of those moments you'll never forget. June 23, 2020, when our neurologist at the Cleveland Clinic said, “Unfortunately, the tests revealed you have ALS.”
In the moment, you're faced with “Oh, my gosh, we have a terminal diagnosis. What?! My husband's too young, my kids are too young. What does this mean? What are we going to do?” All of a sudden, the rest of your life looks completely different than it did just minutes before.
My name's Jen, and my husband Chris and I have been married for 13 years. We have two kids – Brady and Brooklyn. My daughter was three and a half at the time Chris first started having issues. She’s now almost 8 and in the second grade. My son Brady is ten and in the fourth grade. Sadly ALS has robbed almost all their memories of their healthy Dad. Instead, they have witnessed things children shouldn’t have to…they have watched the slow and unrelenting demise of ALS and the ways in which it has taken away almost all of their dad’s functions.
Faced with something like this, and with little kids, I would continually ask myself “How can we help them feel like they're doing something to help dad?” My son, Brady, came up with the idea to start a raking business. His dad loved nothing more than being outside and working in the yard so this naturally felt like a way to help.
What came next blew me away. At just nine years old, he said: “Let's find a place where we can donate the money to help find a cure for dad.”
I saw so many people in the ALS fight alongside us doing different fundraisers to benefit ALS TDI. As I started to do my research, I loved the fact that it was started by a family that had a personal experience with ALS. I loved that it was the only therapy development institute in the country that's dedicated to ALS research. There's such a need for more research, such a need for treatment. I just love that there's a place dedicated to doing just that.
So, Clayton Rakes, named after the street we live on, was born in the fall of 2022. We decided that we’d take one street at a time, ask friends to come with us, and we’d ask for donations. It then evolved into a social media page to advertise what we're doing. The next thing you know, 50-60 volunteers are showing up each week to help us rake for ALS, and people near and far are asking for our Venmo so that they can make donations. In just a few weeks, we raised $60,000! We couldn’t believe it!
We decided we wouldn’t stop there…We took to the leaves again this season and we have our goal set high… 100k. We are so close to achieving that goal and hope this Giving Tuesday you’d consider getting us all the way there! It’s truly been the most incredible blessing during the most difficult season of our lives.
At one point, Brady told me he didn’t think the money we raised would be enough to help Dad. It was heartbreaking to hear his disappointment. However, we talked about how it might not be in time for his dad, but if we keep raking and raising money for research, it will be in time for someone else’s dad. I am certain that as we process all of this and go through the grieving process, this is something that will help my children be part of their dad’s journey. Their dad is a true warrior and a fighter. He’s not letting ALS down easy so we aren’t either. We won’t stop raising money for ALS research until there is a cure or a real viable treatment…God willing it’s in their lifetime and they can feel they were a part of it.
Donate to ALS research in honor of Chris and Giving Tuesday here: https://www.als.net/donate/givingtuesday/?soc=GT811
My ALS story began before I was born. My mom’s father, my Grandpa Milton, died of ALS. My mom was in her early twenties when he passed away, and the trauma of seeing him die of this horrible disease was profound for her, but not nearly as profound as it was when she started showing symptoms of ALS in her seventies. My mom and I had our genetic tests done the same week in 2018, and we discovered that we were both carriers of the C9orf72 genetic mutation.
She felt guilty for passing the gene down to me, but I reassured her that knowing my genetic status was a gift. Five years later, I still feel that way. Although I miss her every day, I remember that I made her a promise that I would do everything I could to help end ALS. I have two kids of my own, and I don’t want them to experience watching their parents die of it the way I had to, the way she had to.
To keep that promise, I sign up for everything I can think to do to help end this disease. I participate in sixteen longitudinal studies of ALS/FTD. I’ve testified before the FDA and the NIH about premanifest patients’ rights to medical treatment and clinical trials. I’m a Peer Mentor at I AM ALS, a proud donor to ALS TDI, and have recently been nominated onto a committee at the National Academy of Science, Engineering, and Medicine to find a way to make ALS a livable disease. I’m a founding member of End the Legacy, a nonprofit organization for genetic carriers of ALS and FTD. I’m also writing a book, A War of Nerves: An ALS Memoir, which I hope to publish in 2024.
ALS has become a full-time job for me, and I feel I was born to do this job. Inheriting the gene for a fatal neurodegenerative disease has given my life a meaning that far surpasses my fear of developing ALS. I’m profoundly grateful to ALS TDI for taking ALS as seriously as I do. ALS TDI has helped me to face the potential of ALS in my future with the hope that we can end it together. I think my mom would be proud!
Donate to ALS research in honor of Mindy, her mom, and Giving Tuesday here: https://www.als.net/donate/givingtuesday/?soc=GT812
Make the most of today. You never know what life will throw at you, so continue to be positive, adapt, and enjoy the day. I was officially diagnosed with ALS about 17 months ago, in 2022. At first, it was a whirlwind of emotions. Initially, my wife and I wanted to keep this to ourselves, but over time things were becoming more noticeable, so we decided to share. The amount of love and support that friends and family have for me is overwhelming. One of the things we have learned throughout this is that there are so many good people out there! And it is because of all those people that we must keep fighting.
I have always been the type of person who is athletic, self-sufficient, and always planning for the future. It's funny how those three things have changed over the past year. Unfortunately, as someone who was still playing golf and indoor soccer just over a year ago, I now need a walker to get around. As someone who never liked to ask for help, I am now dependent on other people to do something as simple as opening a milk jug. As someone who was frugal and always saved to set ourselves up for the future, I now realize that the future is closer than originally thought. Our time right now is precious.
But it's nothing to be down about. We have to adapt. Life still goes on. I'm still enjoying sports, even coaching my daughter's soccer team from the sideline while sitting on my walker. I liked to cook and provide meals for my family. I may not be able to do that anymore, because of my hand weakness, but I'm teaching my daughters how to cook. They've made some delicious meals! All the savings we have worked so hard for are now being spent on family vacations, but we are making memories they should remember forever.
I remember the night after our first daughter was born. At the hospital, looking down at this precious gift while rocking her I said, “I can’t believe I’m going to be walking this little girl down the aisle someday.” Semi-jokingly my wife snapped back, “Whoa, that is a long time away, we don’t want her to grow up that fast.” Well, it’s ironic… about how you don’t want to see your kids grow up so fast… but I do. As a father of three daughters, one of the most important moments that I was looking forward to was that short one minute of walking each of them down the aisle at their wedding.
Unfortunately, the deck is stacked against me, and my girls may be taking those steps alone. That is why supporting ALS TDI is so important to me. They are working effortlessly to research, test, and find a cure for this terrible disease. They need all the support they can get, which is why my family supports them.
There are many things that this disease can take away, but we have learned how to adapt to each new scenario and still have fun. We still need to hang out with our friends. We still need to laugh. We still need to take our daughters to dance, soccer, and wrestling, and be there for them when they need us. We still need to try to be the same person we always were, our bodies just have some slight modifications. That is why you need to make the most of today because, with ALS, tomorrow will be a little worse. That is why today is my best day and I need to make the most of it!
Donate to ALS research in honor of Steve and Giving Tuesday here: https://www.als.net/donate/givingtuesday/?soc=GT813
I had it all, y’all! After being a late bloomer in the relationship department, I’d found my soulmate, John, and got married at age 44. I wasn’t ever going to have kids, but John came to the table with two – and I suddenly found myself not only in the new role of partner but a bonus mom as well. Years of hard work had placed me in a prime spot in my career, working as an Associate Vice Chancellor at The University of Texas System in advancement services and philanthropic giving. I loved our cozy home in eclectic Austin, TX and had a wonderful tribe of family and friends. Happy at 49, I volunteered, we traveled, loved on our kids and dogs, and enjoyed life. We were busy people!
You know where this goes, right? Symptoms I couldn’t explain and couldn’t ignore. Multiple visits to doctors, and experts, and finally, the words spoken by a neurologist, “I really think this is ALS.” In that moment, everything changed. Everything. Except – I still had it all, didn’t I? – A loving partner, two great step-kids, a fantastic life, a fulfilling job… but now add in a diagnosis that would come like a thief to steal things from me over time.
We’re now over a year into my ALS journey and, by all accounts, I’m classified as a “slow progressor.” I’ve never wanted so desperately to be slow at something. All the fast things in my life have taken a back seat. I’m now intentional about my time, my work (both paid and unpaid), my expenditures of emotional and physical energy. That’s what we’re hoping for – time. Time for science to catch up to the disease and then for science to overtake it. Time for treatments and therapies to be developed. Time for a cure.
I’m a researcher by nature and after learning about the work of ALS TDI, I knew it was going to be a charity I supported. Even without my own diagnosis, I’d give ALS TDI my own personal philanthropic seal of approval. Finding out that one of their fundraising efforts, Ales for ALS, centered around craft beer – even better! One of our favorite leisure activities has been and remains spending a sunny weekend afternoon at one of Austin’s many local breweries. John and I have embraced Ales for ALS and are doing all that we can to help bring awareness of ALS and support of ALS TDI to the Austin area.
Donate to ALS research in honor of Andria and Giving Tuesday here: https://www.als.net/donate/givingtuesday/?soc=GT814
oh Bobby! A stubborn donkey, a go-getter, an absolutely fearless, entrepreneurial, loving friend turned family… maybe even more than family is there a word for that… maybe that’s what buttcannon means? If you know you know!
Our story starts when he called me to join him without really knowing each other very much to start a big new adventure in New Orleans in the year 2011. A magical world of new friendships, long bike rides, and Mardi Gras madness wrapped our psyche in plastic beads and glitter! Our early 20-year-old hearts were living wild and free smoking cigarettes inside bars and riding tricycles with strangers under the moonlight! Pirates at heart we would summer back home in New England and continue our wild romp as usual…. until at 25 years old my friend Bobby Forster’s arm mysteriously stopped operating. I’ll never forget him taking me to Five Guys and saying shake my hand weakly it’s a terrible handshake! I was shocked…. His hand was pretty much limp.
He deep-dived into all the tests. Not Lyme …not lupus etc. he started to realize he was very sick. He asked a group of wild bicycle riding hooligans to climb Mount Washington with him. We all strapped our water bottles on and started the climb. We never stopped climbing it turns out. The mountain just kept getting bigger and the terrain more complex… Bobby still maintained his positive attitude. Very rarely did he complain ever! He was grateful to be with his friends and family and he wasn’t going anywhere. He made this very clear. Bobby was diagnosed officially right before Christmas in 2014. As I said, we continued to climb mountains together.
When Bobby asked me to quit my job and be his caregiver I did not hesitate. We went on to trek through the mud of this horrific disease. The biggest honor and nightmare all at once. A year of falling and getting back up. We talked about everything, we cried, we laughed we watched a lot of Family Guy. Bobby was the toughest stubborn ALS patient. I drove him everywhere, to every research study…every experiment… witch doctor…. who cares… he was into it. His will to live was the most vibrant light I have ever seen. His love of life and adventure was beyond inspirational. After a year of caregiving, professionals moved in and our friends stood by his side through every storm, and there were a lot. But we had a lot of great times still. He learned and adapted and moved mountains even after becoming completely “locked in” for the last four years of his life. He always kept his smile. He was the biggest advocate for ALS TDI’s work and believed 100% they would be the ones who would find a cure!
Bobby LIVED with ALS. We got Bobby back to New Orleans from New England three times with ALS! A few of Bobby’s favorite things continued to become staples in his life with ALS until the day he died this past June. He continued to enjoy bike rides, sailing, annual badasses with ALS burlesque shows, baseball, crawfish boils, second lines, tattoos, live music, WWOZ radio, making new friends, laughing with old friends, family, parades, weddings, plane trips, road trips, ALS advocacy, planting gardens, tanning, art, breweries, Zulu his doggy, and the love of his life Julie.
Bobby radiated love, you always wanted to be around him. His wild family and friends certainly found every way possible to continue to keep him smiling! If that meant showing him our butts, so be it! We never stopped pushing the boundaries like he wanted…we did our best to keep Bobby’s life as “normal” as possible in the most abnormal situation. He was always down for an epic adventure, and he was our ringleader. Bobby lived for nine years with ALS. Bobby loved life. He had me tattoo it on his hand after I was inspired by him to follow my dreams of becoming a tattoo artist. He showed me what love and life even mean. I had no idea before I met Bobby. He quite literally set me up with the love of my life, Leo Sunshine. He was the world’s best friend to Bobby and made so many of his adventures a reality. I owe him everything and I will continue to honor him by fighting for a cure for ALS. I’m sure there’s a better way, so let’s continue to push the boundaries of ALS and end it in Bobby’s name! I miss my best friend every day and my heart breaks for everyone climbing this treacherous mountain. Let’s work together to end ALS. Please support ALS TDI today, and every day, until a cure.
Love you, Bobby.
Donate to ALS research in honor of Bobby and Giving Tuesday here: https://www.als.net/donate/givingtuesday/?soc=GT815
I don’t feel like this is my story to write. It is Jay’s, but he is gone. Gone TOO soon. Jay was an amazing friend, brother, dad, and husband. He was a teacher, and a coach, and loved being active. Whether he was training for a half marathon or playing basketball with a bunch of teachers before school, Jay loved to do it all.
One Saturday morning in 2007, he came to me and asked me to look at his calf muscles. He stood on his tiptoes, and I looked down. I just said everything looked fine, knowing that it didn’t, as I saw that one muscle was barely there. I didn’t want this day to come but knew that there was always a chance that it would. You see, in Jay’s family, 21 people had already been diagnosed with the awful disease called ALS. It felt like this really couldn’t be true, that it was happening to him. We had two young boys, Cal and Abe, only four and five at the time. They needed their dad, and I needed him too.
He set an appointment with the neurologist, and they scheduled an EMG. The results showed that he didn’t have any issues. We left that appointment feeling good but also knowing that the outcome was not going to be good in the long run. Jay was officially diagnosed a couple of months later. He had an inspirational spirit and was not going to let this diagnosis get him down. He was a science teacher and researched everything he could about this disease. He got into as many clinical trials as he could to see what would help slow his progression and tried any drugs, vitamins, and supplements that he thought would help.
While going from a cane to a scooter to, eventually, an electric wheelchair, he continued to work, coach our sons, mentor others with ALS, and enjoy life to the fullest. That was Jay. He never once complained or talked about how crappy it was to have this disease. How awful it was to no longer be able to walk, hold a pen, take a shower, and use the bathroom the way everyone else could.
Along the way we found ALS TDI and knew that this organization brought a new hope to ALS research and treatments. Jay passed away on July 24, 2022, at 52 years young, and we miss him every day. This past August I decided to become a part of this amazing organization as member of the Development Team and continue in the fight not only for Jay, but for my family too. Because now, the number has gone up from 21 to over 25 family members affected by ALS. This awful disease has taken too many wonderful people, and it needs to end.
We will not stop fighting until we end ALS!
Writing this because Jay is no longer here,
Donate to ALS research in honor of Jay and Giving Tuesday here: https://www.als.net/donate/givingtuesday/?soc=GT816
Birthdays since 2008 have always been tough.
1999, I was nine years old, and my dad was diagnosed with ALS. Not knowing when the last holiday or birthday would be.
2008, I was 18 and it took his life.
In yet each birthday or milestone teaches us something over 15 years since he’s been earth side.
Today is my 34th birthday. This year reinforced a powerful truth: strength emerges when we stand together.
ALS has empowered me to explore, to question to stay curious and hopeful. It’s taught me to understand and discover what’s humanly possible in my own body and what mindfulness produces when you’re around those who care. It’s opened doors to my career as an athlete, my current career in fitness, and a business owner.
What it also did was steal my father, change my understanding of “family”, and rob me of the little moments like walking down the aisle with my dad.
And it must end. We are the closest we’ve been to discovering the root cause and an actual treatment that can support the thousands living with ALS and 15 people per day in the US who are going to be changed forever by this diagnosis. And beyond that, the families impacted.
Thank you for being a part of this journey. For supporting and reading this far to hear the voices of those who are in search of hope. Strength emerges when we stand together, and we’d love to invite you to stand up.
Donate to ALS research in honor of Christina's dad, Francis, and Giving Tuesday here: https://www.als.net/donate/givingtuesday/?soc=GT817