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 siblings fighting to #EndALS!

Jamie and Stephen Heywood 

Stephen Heywood was diagnosed with ALS at age 29. After finding no treatment options his brother, Jamie Heywood, realized that a gap existed in the preclinical development of therapeutics for ALS. In 1999, three months after Stephen’s diagnosis, Jamie founded the ALS Therapy Development Foundation, which has since become the ALS Therapy Development Institute (ALS TDI), in the basement of his family's Newton, Massachusetts home. His goal was to bridge this gap and bring effective treatments to people living with ALS as quickly as possible.  

Stephen Heywood was the first-ever donor to ALS TDI, writing a check for $10,000 to his brother Jamie and telling him to “Get Going.”   

Because of the dedication of Jamie and the Heywood family, ALS TDI has become the world's foremost ALS drug discovery lab focused solely on ALS. Although Stephen has since passed, the same sense of hope and family drives every decision made in our lab. 

Hindy and Devorah

In June of 2007, my beautiful mother, Miriam Cooper, died of ALS at just 58 years old. My family was traumatized and devastated, but we thought that we had seen the last of that terrible disease. Towards the end of 2012 I started running and decided to put together a team for the Jerusalem Marathon to raise money for ALS research. Little did I know that just days before the marathon, my amazing older sister, Devorah Schochet, would be given that same devastating diagnosis. Devorah was only 38 at the time with 4 children between the ages of 5 and 17. I don’t think I ever really knew what deja vu meant until I saw my sister suffer in exactly the same way that my mother did. Devorah is a beautiful, passionate person and mother and the past 6.5 years have not been easy on her family.

Since my sister’s diagnosis, I have become an avid runner and have dedicated all my races to my sister. I have also helped raise nearly $100,000 for ALS research since that fateful day in February 2013. In the beginning of 2018, I started seeing ALS TDI’s posts on Facebook about the great work they do and one after another I liked all those posts. (Thank you, Facebook, for creating algorithms to gauge what would interest me…) One day I saw a post from them about a charity spot that they got last minute for The Boston Marathon. I thought to myself how amazing it would be to be able to run Boston for the cause that drives each and every one of my runs; my mother, my sister, and ALS. So, I applied. The good people at ALS TDI deemed my application more appropriate for The New York City Marathon, and when you throw in a visit to my beloved big sister, how could it get any better? So, I started to train for the NYC marathon, book my trip to NY to visit my family and sister and raise money for ALS research. Along the way, I started to connect with different people one at a time at ALS TDI. They have since become a big part of my life and I am honored to be one of their biggest fans!

When Race Day came in November, I loved every minute of an incredible marathon and raised over $11,000 for ALS research. After that, I just knew that I had to add an extra leg to my trip to go visit ALS TDI in Boston. I took my niece, who at the time was Pre-Med at Hunter College, and we took the train up to Boston from NY. We were greeted at ALS TDI like conquering heroes, but also old friends. They even ordered in Kosher sandwiches for us because we were traveling all day and didn’t have time to pick up food! The only thing that topped the amazing tour of their labs and the ALS TDI facilities, was that the CSO, Fernando Vieira, sat down with us and took us through everything that they do at ALS TDI on a scientific level. We were truly blown away in just the few hours that we were there.

Since then, ALS TDI has been like family. When they offered me a spot for the second time in the 2019 NYC Marathon, how could I say no? I was able to raise over $10,000 again and visit my sister, who lives in New York. That moment when I placed my NYC Marathon medal on her chest was truly priceless and I owe it all to ALS TDI.

I will continue to run, fundraise, raise awareness, and fight ALS every day with every fiber of my being. Someone I love is waiting…


Christina and Michael

What does ALS TDI mean to mean to me - in a word, hope.

Hope that one day in the future we will talk of ALS as a disease like Polio. A disease that will be eradicated from our everyday lives like a bad dream.

Until then we fight, we fight for those loved ones we have lost and those we fight alongside. 10 years ago the idea of a cure seemed thin… the hardest part though is the start. Sometimes this start is a reaction to an experience or its inspiration from someone else. For me, it was the inspiration from my sister - Christina.

You see before she linked up with ALS TDI - my father’s battle with ALS was just something that happened to our family. I was sheltered from those who fought the same fight, who shared in the same heartache and who yearned to help. The ALS Therapy Development Institute was the vehicle that my sister and I used to cope with the loss of our father.

Our story became not so daunting to bear - we met more people that shared the same feelings and emotions. Many hands make light work… and we felt as though a support network formed through ALS TDI, did just that - using a coping mechanism as an inspiration to share with others. Our fight continues to this day - finding new people that share the same feelings of resentment towards ALS - and using that fire and motivation to better the lives of those who live with the disease today. Fighting as one force - a family - to eradicate a disease that is not incurable just merely underfunded.


Lisa and Theresa

This is the Cross family! We were many: we were close. We shared everything, bedrooms, outgrown clothing. We shared a lively table! We had no inkling that decades later we would find that we share a rare gene mutation, C9orf72. I was diagnosed in 2017 after a year of symptoms. My sister Carol’s diagnosis followed in 2019, and my brother Doug recently found that he carries the gene mutation. Three out of seven, so far, have to face the frightening path that ALS takes us on. The others have not yet been tested, but those of us with children have a greater fear; that our offspring will manifest ALS.

ALS can be emotionally crushing as well. After I was diagnosed my wonderful family came together. We have always been close, but we had spread out. My siblings sent prayers and compassion. My sister Kathryn has masses said for Carol and me, and my brother Doug opens his home for sibling suppers in the mountains. My sister Theresa has been my rock, never allowing me to go to the clinic alone, and helping me in my fight against this disease. She assisted me at ALSTDI’s great event “ALES for ALS”. She and I sold t-shirts with my mantra “F*CK ALS” on them! I proudly wear what to some is an offensive t-shirt to fundraise against an offensive disease. Just a month ago, Theresa helped me with my fundraiser, “Rock, Roll, and Stroll”, a 5K to end ALS. I chose ALS TDI as a conduit to that end.

ALS TDI has supported me personally. I was drawn to the energy and forward movement that was obvious to me. Every penny of what I earn goes into research for a treatment for this rare disease. I have found a purpose and a passion to bring attention to this fight. It is a devastating diagnosis. It is a disease that takes everything. But is it really incurable? Or is it underfunded? This is a time of real progress towards the treatment of ALS, after so little for 200 years. I found out only months ago that my ALS is genetic, but that sad discovery also gave me hope! Research is closing in on genetic ALS. SOD1 research has been successful with mice, but mice don’t respond to C9orf72. Research is closing in on genetic ALS. ALS TDI has even started a research program using Zebrafish, which can manifest ALS symptoms!

I am directing my energy to raising funds for groundbreaking research in Cambridge at the ALS TDI lab. Will you join me in my fight for everyone afflicted with ALS? It’s just the Zebrafish and us! I give everything that I can; time, energy, blood, tissue, CSF. I am a warrior! Join this battle – it’s so close!


Gills and Stevens at ALS TDI

Serena and Venus Williams. Peyton and Eli Manning. Jake and Maggie Gyllenhaal. All are dynamic sibling duos thriving in their respective fields. Here at the ALS Therapy Development Institute (ALS TDI), we have two sets of dynamic sibling duos who are deeply involved in the fight to end ALS; Anna and Joe Gill and Erin and Landan Stevens.

Anna and Joe’s Story

Anna and Joe have been around the lab since they were kids and now work as part of the ALS TDI research team. Erin and Landan joined the ALS TDI operations team over the last two years after moving to Boston from Florida. Day in and day out these sibling pairs are dedicated to finding a cure. The Gill family history at ALS TDI dates back to 2007 when Anna and Joe’s father, Alan (Al) Gill, joined the science team. In 2008, Als’ wife, Cindy Gill, also joined the team as a Senior Associate Scientist. Today, AL and Cindy continue to move research forward at ALS TDI, and Al now serves as the Vice President of Research. Thanks to their parent's commitment to research, for over a decade the Gill siblings have been a constant fixture in the lab. Anna can still remember the feeling she got the first time she came into the lab. “I was around 12 years old, and the second I walked into ALS TDI it felt like home,” she said. “Coworkers loved and respected each other, truly collaborated on innovative science, and to this day it 100% feels like part of my family.” Anna began working at ALS TDI in 2015 as a research intern while completing her degree at Emmanuel College. In 2018 she transitioned to a full-time scientist position on the in-vivo team focused on C9orf72-mediated ALS. Following in Anna’s footsteps, Joe has been interning as part of the ALS TDI Precision Medicine Program (PMP) since July 2018. Prior to beginning his internship, Joe had helped to support the ALS TDI science team by volunteering in the lab’s animal research facility. Being around the lab for so long has created a deep connection between the Gills and their co-workers. “Many of my coworkers have known me since the age of 8 and have seen me grow and develop over the years,” Joe said. “I have never experienced a warmer and more welcoming environment and am blessed to be able to work with the people I do.” “People ask me if working with my family is weird, but it isn’t, mostly because I also consider everyone else here my family,” added Anna.

For Anna and Joe working at the lab together was a natural evolution. “As soon as my sister started working at TDI, I basically knew I would work here one way or another,” Joe said. “Anna is so focused on experiments within the lab just as my mom is and has served as one of the best mentors I can ask for.” Although they didn’t have any personal relationships with people affected by ALS prior to joining ALS TDI, the Gills did have a health scare when their dad, Al, was diagnosed with cancer. After surgeries, treatments and months of recovery thankfully he is now in remission. “The feeling of relief that I experienced hearing his surgeon says that is something I want all of the families affected by ALS to feel,” said Anna. “No diagnosis should come without hope.” Through their work, at ALS TDI they have now seen the effects of the disease up close. “ALS is a devastating disease that completely alters the lives of patients and families alike,” said Joe. “Interacting with those afflicted constantly puts into perspective the weight of hopelessness they have to deal with each day. No one deserves to suffer or watch those they love to suffer.” This commitment drives them to accomplish ALS TDI’s core mission: to find effective treatments to slow and stop ALS.

Erin and Landan’s Story

The Stevens’ kids haven’t been around ALS TDI as long as the Gills have, but they were immediately moved by the commitment and passion their co-workers showed, not just for their work at ALS TDI, but for the ALS community as a whole. “People will go out of their way on weekends to go to events,” said Landan. “They’re really entrenched in the community which is super cool because most jobs aren’t like that.” Landan joined ALS TDI as a Finance Associate in June of 2019, a little over a year after Erin started. “I was actually really excited when my brother joined. It was really cool for him to enter a world that I’m so passionate about and that we didn’t talk a ton about before he started working here,” Erin said.

Erin works as a Development Director, attending many fundraising events ALS TDI hosts with partners across the U.S. She works with families who are determined to fun critical research happening in the lab. She discovered ALS TDI after volunteering at the Tri-State Trek in June 2017. “I’ve made a lot of really good, lifelong friends with people in the ALS community,” she said. “I love getting to visit them and when I see them at events it feels like a big, fun family reunion.” Although they don’t work directly with each other often, being in the same office creates a unique environment for the Stevens. When Erin moved from Florida to Massachusetts to join the ALS TDI team, she and Landan didn’t get to see each other too often. Luckily, that changed when Landan also made the moved up north. “Going from seeing Erin a couple times a year to seeing her in the office every day is really cool,” said Landan. “I also get to see the impact she has had on everybody here, and that inspires me to make an impact too.” Erin believes that working together has changed their relationship for the better. “As a whole, we’ve gotten a lot closer since we started working together,” she said. “And it’s cool for him to become friends with my friends who are both of our colleagues and to just understand me a little bit more as an adult.”

ALS TDI is a family striving to help all families affected by ALS. “This place has a habit of picking people up out of their lives and changing them forever,” said Anna. “When I started getting interested in science and medicine, a super low-level internship position popped up and I took it. The rest is history-- now I have a degree and haven’t slowed down on my ALS research since.”


Mike and Sharon


When asked how he is doing, always says he is “FINE.” And so, all of our eight siblings—there are ten of us total, are “FINE.” We stand and support him every way we can him as he battles this disease. We stand with Mike full of love, admiration and pride and to support his efforts to fight, defeat and find a cure for this disease. Mike’s concerns and willingness to help others as they face this disease is one of the reasons that he established the ALS Support Group in Berkshire County. Once again always putting others first.

Family and friends, along with fellow firefighters, Police Chief Jeffrey Roosa, and fellow police officers recently joined a Tug of War Competition known as “Arrest & Extinguish ALS” to take on this fight to raise funds and awareness for ALS TDI. ALS TDI is a nonprofit that focuses on research and is committed to finding effective treatment options that could slow down the progression of ALS and eventually lead to a cure.

What our parents taught us, and how we live—especially with Mike’s example, is that FAMILY IS A BOND THAT CAN NOT BE BROKEN!


Chris and Dan

When my brother was diagnosed with ALS in 2008, I probably had a similar reaction to most people given this news. What is ALS? How long do we have? What's this going to be like for Chris? What can I do to help? The immediate answers were unbelievably depressing: it's an incurable terminal disease, we'd have 2-3 years, it's going to be awful for him, and there's not much I (or anyone) can do to help.

11 years later, and my brother is still with us. And the answers to those questions, while not great, have been far better than I could have ever expected. He has beaten the odds, partly through getting a "better" form of ALS, and partly, in my view, because he's just "Chris." Funny, light-hearted, easy-going, and quietly determined. People are drawn to Chris-- he truly has a magnetic personality. And I think this inner peace has led to such a slow progression. Which gives us all hope that a cure will be found in time to save him.

Thanks to the work of ALS TDI and many others, I'm convinced this will happen for Chris. In the last 11 years, the message has gone from "comfort" to "cure." While comfort is still important, it's not the only thing we can do. CURE is such a stronger word. It's overcoming. It's living. I want my brother to be comfortable, but more than that I want him to live.

In February Chris got an ALS Hero award, a national award given out by the ALS Association to a few people across the country each year. No biggie. No surprise. And, earlier this month Chris participated in yet another ALS Walk, near his home in Scottsdale, AZ. As he has done for the past several years, he took his unorthodox, practically miraculous approach to it. Instead of being pushed around the course in his wheelchair, Chris walked the full length of the course, averaging 0.5 mph.

His traditional routine has him starting before dawn, usually 2-3 hours before the official start and sometimes before the course is even set up, then he gets passed around the 4-hour mark by everyone else except his group, and then finishes 2 hours after everyone else. Usually, it takes him six hours to walk the three miles. Try walking that slowly in the Arizona sun for 6 hours. OK now try doing it with ALS. Nope, didn't think so. Chris doesn't "enjoy" it, he thinks about it 364 days a year-- the day after one is over, he's thinking about the next. He sees it more as his duty, his sign that he's not gonna quit, his message of hope to others. Two weeks before this year's walk he texted me that he "...got the greatest news of the year. The walk is...wait for it...wait for it...1.35 miles!!! Yes yes YES!!!" I think Chris earned this year's "easy" victory lap. I joined him for his traditional early start and we actually arrived at the finish line before anyone else started! That was pretty funny. A well-earned first place after several grueling, inspiring, truly miraculous last-place finishes.

Before this year's walk Chris also texted me, "If it stays at 1.35 miles, I might do it through 2030." I have no doubts about that. But by then I'm convinced he'll be cured. I wonder if the ALS Walk will even exist in 2030? Let's keep this going, from comfort to CURE. Oh...and Go A's! (that's for you, Chris)


David and Scott Lloyd

Three years after the Ice Bucket Challenge, I was living a normal life as a happily married father of two, with a thriving business that kept me active. When I began experiencing abdominal cramps and weakness in my right thumb, nothing could have prepared me for the diagnosis that was to come— “You have ALS. It is incurable.” I was in a state of shock. How could ANY disease be untreatable in the year 2017?!?

My life and my family’s lives have changed forever with my diagnosis. A happy ever after with my wife now dims from view. I may not be there for important milestones with my kids: vacations, swim meets, graduations, marriages, grandchildren.

It’s hard to think about the things that I may not be able to do in the future, but I’m lucky that my “best brother,” Scott, helps me focus on the things I can do right now.

Scott and I share a passion for cars, particularly, fast ones. Thanks to Scott, we’ve spent the last year living our dream or racing cars together, while I still can. For us, racing has become about finding a cure for ALS. Our passion has turned into a mission to help raise funds and awareness for research at the ALS Therapy Development Institute.

And even if my time is limited, I know the work being done at ALS TDI has the potential to save someone else’s sibling, parent, spouse, or child. Perhaps even my own. Perhaps even yours.


Auburn, Angela, and Carnell

ALS first came into our lives as a family when Carnell, our brother, challenged us to do the Ice Bucket Challenge in August 2014. It was a fun and helpful challenge for a good cause. On March 12, 2015, the reality of ALS came slamming down on us with Carnell's diagnosis. From that date until April 14, 2017, when we lost Carnell to ALS, we fought alongside Carnell. We watched a healthy, energetic and full of life person deteriorate in front of our eyes. The frustration and helplessness the patient and family go through is indescribable. ALS makes you cherish the good moments, hours, days and weeks you might get.

Auburn and I (Angela) have been participating in fundraising for ALS TDI since 2017 when we were invited by Katie Bauer (who lost her husband Charlie to ALS in 2016) to ride in the Tri-State Trek. It is a three-day bicycle ride to raise awareness and money for ALS TDI research. It was a phenomenal event minus the bike ride, lol. To see so many living with ALS at the event and how they make the most of every moment was very humbling.

This year Auburn and I didn't do Trek, but instead opted for Ragnar for Research. It is a 36-hour relay run. There are eight people to a team and each person has to run a 3-mile loop, 5-mile loop and 7.5-mile loop. We had two amazing teams participate and it was the best weekend. Everyone had to run in the dark on at least one of their runs, you don't get a lot of sleep, you're exhausted, you're hungry, hoping you're strong enough to endure and looking forward to the finish (victory). This is much like someone living with ALS and their caregivers. It is a 24/7 fight. Auburn also ran the NYC marathon in honor of Carnell.

Auburn and I raise money and continue to fight in memory of Carnell Rose, Charlie Bauer, Rosalee DeJarnette, and everyone else who has lost their battle to ALS. We fight for a treatment and ultimate cure for those facing ALS now and will face it in the future. We know first-hand what ALS looks like and it isn't something anyone should have to endure.

Our family is grateful for the time Carnell was with us, but we definitely wanted to grow old with him. We will continue to fight for everyone facing ALS to have the chance to live a full life. It has been great to ride and run alongside Auburn for this great cause. Both of us are grateful we have the ability to still ride and run. As we've said since day one...we will ride and run for those who no longer can. When we are tired, we will keep going because we can.


Rita and Mark

Like most siblings, we didn’t always see eye to eye, but we loved each other anyway.

I remember when he helped me move in 2003 and said he had no strength in his hands. That began the journey to diagnosis in March 2005.

He’d always been such a hard worker, physically strong and in good shape. He was intelligent and had a dry wit. He loved to travel and experience other lands and cultures, museums and art. Our last trip together was Ireland which we cut short as he was ill. My sister and dad traveled with him after that to sunny beach locations which he loved to visit in cold Minnesota winters. His inability to walk and use his hands curtailed his ability to swim or snorkel in Aruba and Belize. But he enjoyed the trips anyway.

What a trooper he was. He never complained. He never asked, “why me?”—but I did.

I recall the quarterly doctor appointments once he’d been diagnosed. They were many hours long, with various specialists coming in to give their reports on a continuous loss of ability. It was sad and draining—no good news, no hope.

Mark passed in 2007, much sooner than we thought he would.

In order to be good stewards of the time we have, in contrast to Mark’s time cut short at the age of 54, we wanted to give somewhere that could make a difference. We wanted and needed to make sure progress toward treatments and a cure would happen. We could not wait. We were introduced to ALS TDI and their laser focus on research which now gives us hope for progress.

I miss my brother Mark. I’m grateful for the years we had and that this fiercely independent man learned to accept help and the gift of time from family and friends. Now we are asking you for help on our mission to ensure others have more time. Will you help us and ALS TDI end ALS in memory of my brother?

Terri and David

I had a brother, my only sibling…but at times I say I “have” a brother because I think of him a lot. His voice still advises me as our mom ages and needs more care. We miss David daily. Today, as I write this actually, he should have turned 59 but lost his life to ALS at age 49. In January 2007 he called me at work and told me his diagnosis was NOT Brain Cancer but ALS. The neurologist at Northwestern had told him he had 2-4 years and looked like his ALS was fast progressing. Like almost every family I have met since working at ALS TDI expresses the same emotion-----overwhelming fear, disbelief and not knowing where to turn. Unfortunately, while my family and David’s wife and children witnessed ALS, we did not know anything about the research work at ALS TDI. There was not much research hope that we found in 2007, (remember lithium?) but he always remained optimistic, never feeling bitter and he learned to set new priorities. For the first year or longer of his diagnosis, David and I talked every day by phone, discussing issues that we never ever brought up in conversation beforehand. Life and death issues were not given much thought when we were working, both married and raising children, 3 each. And as usual, David would talk about some kind of prank, joke or mischief he was in to. One day, I remember his eye gaze was not working so he sent a picture of him wearing a homemade wire colander-helmet, metal prongs (coat hanger) protruding from it, an infrared dot on the “helmet” and said still can’t fix the eye gaze. He was an engineer from Georgia Tech of course. I wish I could find that picture again. The pain still emerges like today when we should be celebrating old age together and getting Senior Tickets at the movie theatre—Ha! But no one should suffer from ALS and I’m very hopeful a game-changer is around the corner. Today there is much HOPE.

Osiel and Adrianna

My younger brother, Osiel, is 24 years old and has had ALS for the past three years. ALS. The three letters that I haven’t been able to escape for the past three years. The three letters that give me nightmares. The three letters that no longer let me hear my brother’s voice. The three letters that have stopped us from sharing a meal together. The three letters that make us going on walks a thing of the past. The three letters that made him choose between death or getting a tracheotomy. The three letters that have left him completely paralyzed. The three letters that make me wish time would pass more slowly. They are the three letters that have stolen all that I imagined the adult life we’d have together would be.

The way that I combat ALS as a sibling, is by supporting Osiel in every way that I possibly can. When he wants to organize a fundraiser to raise awareness of ALS, I’m there running a booth. When he wants to attend an ALS outreach event, I’m there networking. When we’re out in public and people stare or ask questions, I’m there to educate. When he wants to blast music on our Alexa speaker and bob his head to the rhythm while he still can, I’m there to shout the lyrics and bust out all of my dance moves. When he wants to take a shower, I’m there to wash the soap away. When he wants to go to the bathroom, I’m there with the urinal or bedpan. When he wants to get out of bed, I’m there to use the Hoyer lift. When he wakes up all throughout the night, I’m there to make him more comfortable. When he’s angry and sad and cries I’m there to read his lips and wipe away his tears. Whenever for whatever, I’m there.

Organizations like ALS TDI are invaluable. ALS TDI employed Osiel while he was in the earlier stages of progression. The staff introduced us to people within the ALS community so we could learn more about the disease and how to prepare for the road ahead as best we could. The staff helped my brother create a fundraising page where he was able to raise close to $50,000 and significantly more than that by hosting and speaking at events. ALS TDI not only focuses solely on funding research to cure ALS, but it provides hope to those who have found themselves in an incredibly hopeless circumstance. And for that, we are thankful. 

Clare and Corey

Corey was diagnosed with ALS in July 2007 when he was 21 years old. I was 17, about to start my freshman year of college, and my world was shattered. He was (and still is) my hero and truly the best older brother I could imagine. I wished it was me, instead of him.

Shortly after Corey’s diagnosis, my family attended an ALS 101 event hosted by ALS TDI. Learning about ALS TDI, a lab where scientists are working 24/7 and solely dedicated to ending ALS, was the first time I felt hope after Corey’s diagnosis. Our family started fundraising for ALS TDI and became committed to supporting their work. Our fundraising has showed us the incredible generosity and support of our family, friends, and community. From bake sales, marathons, Corntoss tournaments, cut-a-thons, dinner-dances, and more, every dollar has made a difference. We are forever grateful and in awe of our Corey’s Crusaders.

After graduating from college in 2011, I started working for ALS TDI. I could not imagine a more meaningful job. Over eight years later, I’m still working for ALS TDI. It is my way of fighting back for Corey, and for the amazing people and families I’ve met affected by this awful disease.

Corey is the “lucky of the unlucky” as it’s been over 12 years since his diagnosis. He continues to coach the Piedmont High School tennis teams, attend many Oakland A’s baseball games, and do Pilates twice a week. I’ve never heard him complain about his diagnosis or the things he can no longer do. Growing up, I admired Corey’s kindness, work ethic, intelligence, and athleticism. Now, I also admire his positivity, outlook, and fight. I am thankful for every day with my brother and I will never stop fighting for him.  

You can donate to support these siblings on a mission to #EndALS here