Love Notes: We Fight ALS with Chris Courtemanche

PLEASE SHARE. PLEASE DONATE. CHRIS IS OUR ROCK, HELP US BE HIS.

On November 14th, 2019, things got real.
One by one, our phones started to ring - it was Chris Courtemanche. Just 13 days after we all celebrated his 28th birthday, the strongest person we know was diagnosed with ALS. It's a rare, brutal, and unrelenting disease with no cure. He has the most aggressive form his doctors have seen yet.  

Four months ago, Chris was walking up the stairs to his NYC 6th-floor apartment. Today, he’s back with us in Philadelphia, bound to his wheelchair, and soon might not be able to talk. Chris may not win his battle with ALS, but that is not going to stop him from putting up one hell of a fight!

WHY WE NEED YOUR HELP

ALS is an insanely expensive disease. Even with insurance, many families go bankrupt fighting it. Chris doesn't have a "traditional" family unit. He has us - a bunch of 20-somethings. Chris needs your help — we need your help — to give him the financial stability and comfort he needs for the fight of his life. Please open your heart and share what you can, so Chris can fight with the grace and dignity that defines him.

Your donation will go towards required medical equipment, assistive technology, costly drugs, and round-the-clock home care. We have set an initial goal of $200k which we have no clue if we can reach. But if  we do, we will adjust our goal to ensure Chris has all the resources he needs. Thank you so much for your support!!!

Scroll down to read some of our personal stories about Chris and why we love him. We’ll continue to add more as we go!

WARNING: You’re going to end up loving him as much as we do! 

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OUR LOVE NOTES FOR CHRIS
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“As long as I have my mind, it’s all that matters” - Chris


Chris has always been the strong one, the ambitious one. He loves projects, and he loves working. Not being able to work has been really hard on him, but he always says,  “As long as I have my mind, it’s all that matters" - such a Chris thing to say. 

We are Chris’s boyfriends, Nick and Drew. We met at Woody’s in Philly about two years ago. He was the first and only person our dog ran right up to, she is skeptical of new people. The rest is history.  It started off casually, but the more and more the three of us were around each other feelings developed. As hard as some relationships can be with just one other person, the three of us decided to try something none of us has ever done before. Thus three became one - a throuple. It may be “unconventional” to some, but the three of us bring happiness to one another. We all bring something different to the table and just have this amazing connection! We all get along, we share stuff we don’t normally share with people. Chris is the balance that makes us whole. Chris had told us about his family and how it wasn't really the greatest, so we created our own family. 

It’s hard to find people you can be around all the time, and want to be around all the time. We are lucky enough to have him in our lives. He is one of those people that is not always the best at showing emotion, but he is someone you can talk to about anything. He can redirect the situation and he has this amazing, different way of thinking. He is always so calm…well, he always appears to be calm. Sometimes he is freaking out, but you won’t know it until later when he finally tells you. It is weird seeing him emotional now, it is not what we’re used to. 

We were really looking forward to when we were all going to be living together. We had so much planned for the future and how we thought everything was going to be. We talked about houses - Drew wanted something that was already done, and Chris wanted a fixer-upper. So we were settling towards something that was still nice but could also use some work. Chris was going to be the one to fix it up because he was the handy one, definitely the handy one. Chris likes putting stuff together. We talked about moving somewhere warm (nobody likes the cold). Our little family was coming together. The three of us, our dog Stella and our cat Iris.

All his friends have all these stories. They have been together for years and years. We don’t have as many stories, although we do have some great ones. More than anything, we have all this love for him and we were hoping to make more stories over the years. Spend a lot of time together. 

Before us, a trip to Thailand was Chris’s dream. Something he always wanted to do. We were like, “We can go with you!” We wiggled our way into the dream. “Okay, we will all go together one day.” 

Since diagnosis, it’s been pretty progressive. We helped move him out of his apartment in New York at the end of November after he took a leave of absence from work because he was having more and more difficulty walking. He couldn't get up and down the stairs of his six-story walk-up. We moved him back to Philly and found a handicapped-accessible place for the three of us, thankfully in a very short amount of time. He needed a wheelchair faster than anyone could have imagined.  

We thought it was going to be slower and we would have more time. A few more trips, make some more memories. He has a deficit on the SOD1 gene, a familial form of ALS, which is less than 10% of the ALS population. The team at Jefferson said that he was their first patient with this gene mutation and it was pretty progressive compared to others they had seen. Trips are no longer in the plans.  

We've been able to keep him at home, so far. We want to try to keep him at home where he feels comfortable. We love having him around.  His smile lights up the room. We have our good times. There are some rough days, but they are worth it for the good times. These are the memories we can still make, so we embrace them. He is an amazing person and we are so glad to be here. At least we are able to be with him on this journey. No matter the circumstances, we are with him. 

This is so hard to put into words. We can feel the emotions inside just trying to get this out. Chris is the talker and social butterfly. With this disease, his voice has weakened and he struggles to talk. We are more about action. We do our best to show it by taking care of him and trying to make him as comfortable as possible. To stay with us as long as possible.  He always says sorry because he feels so bad, but there is nothing to be sorry for.

Chris: We love you so so much. You’re one in a million. You bring sunshine in the darkest of days. We have built so many memories together that will never be forgotten and you have become part of the family. We want you to be as happy and comfortable as possible and not to have to worry about a thing as we tackle this journey together. When three worlds collide, a Throuple Threat forms. You mean the world to us and we love you!

             - Nick & Drew

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“Paging Miss Hedgecock” - Chris

Attempting to sum up what 10 years of knowing Chris has meant to me sounds...well, damn near impossible! We met during our freshman year at the University of Tampa, we instantly connected. He's been a massive (and fabulous) part of my life ever since! Chris not only has danced by my side for the past 10 years; he's also held me through my hardest times (vino always at the ready). He wholeheartedly has become my family. 

I remember Chris sharing with me the loss of his mother to ALS, just one week before his high school graduation. He spent his teenage years taking care of his little brother and sister while his dad supported his mom through her fight against this terrible disease. Chris shared stories of pulling her down their mile-long New Hampshire dirt road driveway in a red wagon to go get the mail, just to get her out of the house for a bit. Chris always had a special bond with his mom. He told me the genetic mutation that caused her ALS was familial. That there was a 50% chance he inherited the same genetic mutation. But...we were young and invincible, right?!

Summer after our freshman year, Chris came out. He was in New Hampshire at the time and I received a phone call. He wasn’t sure what to do, not everyone took the news very well. I remember telling him to get his A$$ back down to Florida, right now; that he was officially my family (pfft, as if he wasn't already). We spent the remaining weeks before our sophomore year of college mastering the dance to "Party Rock” by LMFAO, laying out and getting tan by the pool, and cooking chicken and pineapple on the grill. But sophomore year, now that’s when I really got to watch Chris grow comfortable in his own skin. Getting his first (of manyyy) boyfriends, all of that fun stuff! The shorts got shorter, the shirts got shorter - Chris became a total sucker for a good crop top! But most importantly, he found his authentic self.

It was such a privilege to be there watching him define the Chris he is today. Chris is now the most authentic person you’ll ever meet! He also understood just how important it was for everyone in his life to be their genuine selves. He always supports and motivates us to be the most comfortable we can be. His strength, independence, and his loyalty are why I love him so much today. Such a Scorpio!

Chris has been...my constant - always there. So it's crushing...to see that he's now in a full-time wheelchair and really can't stand at all on his own or put weight on anything. It's hard to process that he won’t be able to do all these things he aspired to. And there were sooo damn many!

Any time I imagine getting married (rare thought!), I've never tried to picture who the groom would be. The one thing I did know: Chris would be right by my side. Looking fucking FIRE in his suit! Knowing there's a chance he won't be right next to me now...is absolutely earth-shattering.

Chris: Our worlds collided back in Philadelphia for a reason. I'm forever grateful to know you, to have evolved as individuals, together. You're the love of my life, you're my family. You are supported and appreciated beyond belief, and we will do everything thing we can to be damn sure you have nothing to worry about other than fighting this thing.

             - Taylor

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"YAAASSS JESSSS" - Chris 

A few years ago, the phrase YAAASSSS was coined. It didn’t take very long at all for Chris to figure out that it rhymes with Jess...It took even less time for all our friends to catch on and realize it would be the best way to torture their friend named Jessica. Probably for about 2-3 years, I was constantly summoned by “YAASS JEESSS!” I hateddd it. Still definitely hate it. But would give anything to hear that again.

I met Chris back in 2015 on a Craigslist ad. I was just moving to the city and needed a fourth roommate. In walks this 6' guy with perfect, adorable curls... AND he’s built! I was like, “Oh my gosh, we’re in trouble ladies…there are three of us living here. We are going to fight over this guy.” Luckily, that was not the case. We had nothing he was remotely interested in. It turned out to be for the best because instead...we got an amazing friendship, and I got another brother. He came home with me for Christmas one year and my mom joked if I wasn’t married by 30 and having kids, she’d bring the turkey baster! Just so Chris would officially be part of our family. 

Chris is one of those guys where no matter who you are - if you’ve known him for 5 years or 5 minutes - you have this overwhelming urge to wrap your arms around him and give him a hug. You can tell him all of your deepest secrets. “Chris, don’t tell anyone. We’re good... right?"  Which you can’t say about a lot of people! It’s hard to summarize the story of Chris and just how wonderful of a person he is. It goes beyond words. He has done more things for me than I can count.

I had a tough day when I was working at a job making $12 an hour. Barely able to make ends meet. He would say, “Ya know, I think I need a drink. I think I need someone to come with me. I got you.” He is never one to judge - you could bare your whole heart out to him. There is nothing you can’t fix with a "Chris drink," which is now a unit of measure. A "Chris drink" is enough to take care of all your problems. 

“Am I ready to start having a family?”
“Is it the right time to buy a house? “
"What’s my next career move?”

Those are the decisions that someone who is 28 should be making - not "who will be my power of attorney?" and "what is my will going to say?"

Chris: I’m fighting because you have always been an advocate for my happiness and making sure that at the end of the day, I am being my weird self and owning it. You remain such a positive person even in the most difficult times and I promise to do the same for you.

             - Jessica

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 No Sunscreen Needed

I hired Chris a couple of years ago to run a store for me and it was love at first sight. Through that, I built a personal relationship with him, which doesn't usually happen with people we work with, right? 

I have always felt uninhibited around Chris, to be myself. We've never judged each other. We’ve never been mean to each other. We just have this really magical relationship! The love and support we give each other are what make that possible. 

I'm also grateful for the impact Chris has had on my children's lives and for him to watch them grow. He’s really become a part of our family...getting to share the Scorpio love with my youngest! Chris helps me understand my son a little better...and I'm SO appreciative of that!

As I think about this next chapter we're going through in Chris's journey and everything he's dealing with, I think about being with him the day he was diagnosed. To hear the words, "You have ALS" and to see how he...handled that! He had so much grace. Let's be real...The doctor that delivered the news was not graceful, nor compassionate, but Chris took a moment for himself just...to feel it. It was a really beautiful moment. That's who Chris is.

Chris is going to acknowledge the pain in his life. The bad things. But then, Chris is going to pick up! He's going to figure it out. He's going to be glad to be here and do what he can. 

We took a little bit of time to sit on a bench and had a really beautiful moment, just talking. We talked about his mom, the day, Central Park, New York City, his amazing friends, Drew and Nick, just everything! We got back to his apartment...and it was time to call everybody. As hard as those words were for him to say, he was strong. For everybody else! He was supportive and heard all of them. He let them be sad and took their sadness, not as a pity to him, but understood that everybody is going through this with him. That is just a small glimpse of who he is. He is the person that can get terrible, terrible news and still be strong and support everybody else. 

This is teaching us all so much. I know we're going to get through this. Teaching us to remember that love always stays. Chris is so great at giving that love and I know we'll keep that going! He's glad to be here, and we're all glad to be here with him. So, thank you.

Chris: You know how much I believe in everything happening for a reason - even if we have no fucking clue what that reason is. I know we are meant to be here with you, and all my boys agree. No matter how painful and scary the journey gets, love always stays. We love you, Chris. And I’ll always be here to hold your hand.

             - Morgan

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MY FIRST LOVE 

For those of you who don’t know, I dated Chris for four years. I met him at the University of Tampa. I don’t necessarily believe in love at first sight, but I was so enamored by this boy. His muscles. His tan, Florida skin. I was going to do everything in my power to get him. We started getting lunch every day together, he started sleeping over all the time - we just really hit it off. We started having all the same friends, intermingling circles, and it was such a great experience because...I didn’t care about school. I didn’t care about being in Florida. I didn’t care about anything but him. And making sure that he was in my life. Because I saw the future and it was amazing. Truly.

After college, we eventually ended up moving to Philly. Well...to an apartment in what I can only describe as a trashhh suburb of Philly. You could put a beer can on the floor...and it would literally roll to the other side of the room because it was that crooked! But, we made it work. We built some furniture and got some cheap couches from family and friends. We were each working two part-time jobs while I was also trying to go back to school. And the entire time...Chris cooked for me, cleaned for me, and took care of MY sorry ass!
I will never forget that because the roles are reversing.

It’s hard to watch somebody that never sat the hell down, never stopped cooking or cleaning, and never stopped making sure that everything was so...perfect (without actually using the word perfect because that’s “impossible”). Looking at someone who’s now in a wheelchair, who’s losing mobility of his hands and feet, who's losing his breath, is heavy. To go from being the perfect housewife while still working and just being this overall great person…This now is just the hardest thing to watch. The hardest thing to have to accept, honestly. 

We broke up after 4 years...like, he broke up with me. How could he?! I had just lost the best thing in my life. There was a long period of time where I completely resented him, would not let him back in life. At the end of the day, because of knowing how truly amazing he is, I don’t resent him. I don’t want to take back that he broke up with me. I don’t want to change that...because all of these things led to our friendship. He is my person...he is my dude. He’s not my boyfriend, he’s not my husband, he’s not my fiance. He’s not someone that I share any “relations” with, but he is somebody that I am so incredibly grateful to still have in my life and to call one of my best friends. You should know that Chris does not deserve this. Every time I wake up and stand out of my bed, I think to myself, Chris doesn’t have legs like I have legs anymore. He was the man that needed 20 legs to accomplish everything that he was going to take on. And that really hurts. 

I may not right now be willing to admit he’s leaving us, but I do know that he's made an incredible impact on me and all my wonderful friends. I am honored to say I can go day to day still knowing that he was a part of my life. I think that what you should take from this...and what you can learn from my many years of being with Chris, whether it was in a relationship or just a friendship...is that Chris is an amazing and beautiful person who leaves an impact on every person he meets. He deserves so many more years on this planet.

Chris: You have shaped me into the person that I am today. Even though all of our plans to be forever in love didn’t work out, I am beyond grateful that we’ve stayed the truest of friends. It’s my time to fight for you like you ALWAYS did for me. I love you so much.

             - Phil

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"My Favorite Crazy Cat Lady" - Chris

When my best friends were looking for a new roommate on Craigslist...I was very skeptical. I told them, "NO! You will get a weirdo who will kill you and wear your skin as a disguise!" But I am SO GLAD they did not listen to me. 

Upon meeting you, Chris, I instantly knew that you were going to be a HUGE part of my life. Did I know that one day you were going to just randomly ask me to shave your head? No. Did I know that I met one of the most amazing people in the entire world? Yes! 

Your laugh is contagious, and you're always looking to have a good time. Thank you for always enjoying the activity of trolling Jes and Maddi. For helping me annoy them beyond all belief. 

You FaceTimed me with news that I was not expecting. You had a smile on your face and instantly started listing all of the positives this terrible disease was going to bring…you moving back to Philly, being more available to hang out, and more. It takes a special person to be able to do that when you have something so tremendous working against you.

Chris: All my life I always cared too much about what people thought, and you helped me let go of that. You deserve to have people by your side to take care of EVERYTHING so all you have to do is to fight this with everything you’ve got.

             -
Dana

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I love you like peaches!

I’ve been trying to remember the very first time we met. What it has led me to realize is that I can’t because life in Philly without you is a complete blur. From the first time, we secretly iced everyone on the cabin trip to impromptu summer cookouts, you’ve been such a beam of light in my life. In all of our lives. You have the most infectious laugh and your spirit is fierce! I love that I can always take a photo and you’re the first to strike a pose or flash that beautiful smile. Thanks for always appreciating my music taste and letting me ad-lib lyrics while we blast our favorite songs on the cruise to Dewey. “I love you like peaches. I love you like a blue sky. I love you like forever” because you’re an amazing guy!

In a single word, Chris is dependable. He’s always been our guy. He’d cook dinner or wake up early to clean. Safest driver, too! The point is, I could always count on Chris. Sometimes that was cracking open my crab legs because it grosses me out. Sometimes that was pouring a glass of wine. Sometimes that was simply listening. Whatever it would take to make me feel better, Chris was there for it.

He was always there to quite literally lift all the heavy things that none of us girls could...So, imagine my surprise when all of this progressed so quickly. This winter when we all lifted you up the stairs of our cabin because it's not a proper girls' weekend without you. When we planned our annual trip, we never could've foreseen that you'd be diagnosed with ALS before the trip ever happened. Watching you gracefully navigate all of this truly confirmed how strong and amazing you are. Thanks for being the rock on the FaceTime call while you shared your diagnosis. Thanks for bearing with us while we figured out how to carry you upstairs. Thanks for your patience as we learn how to best help you.

Chris: I’ll do everything on this Earth I possibly can to keep you around because no one else will ever love a sassy bitch like Iris as much as you do. But really, I love you with all my heart and always have your back because friends are the family you choose.

              - Lacy

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Dancing Queen

"Is it too late now to say sorry? 'Cause I'm missing more than just your body..."

Well, that right there is the song I woke up to EVERY day for three months straight when Chris and I lived together on Terrace St. He was obsessed with this song and blasted it EVERY morning on the living room speakers. Thanks, Craigslist...

We have so many memories together but the majority of them are us dancing at Voyeur or at Woody's. We'd go just about every weekend (maybe during the week if we were feeling crazy) and dance the night away! Before you knew it, the lights would come on at 2 AM and we'd be like, "where the heck did the time go?!" I remember wearing my FitBit and already having 2,000 steps for the day.

If Chris wasn't working the next day, I'd always look forward to waking up after a night of drinking. I'd wake up to a delicious smell or a knock on the door. "Maddi, I'm cooking this" or "Do you want any?" He'd even bring it to my bed if I was hurting too much to get up or socialize yet!

Chris also shares my obsession with ranch dressing. I remember one time we stumbled into "Mike's Pizza" in Manayunk after a night of cocktails at Mad River. It was snowing so hard. We ordered a large pizza, got like 50 sides of ranch (uh, they have the best ranch)...but I could barely walk up the hill to even get home! Oh, Chris had my back...literally. He was PULLING me up that damn hill saying, "Come on, Maddi. Think about that ranch. Let's get that pizza!" The whole way home. While it's an absolutely ridiculous story, it represents so much more...

Chris has been my rock. He's kept me going, he always has. While he can't pull me up that hill anymore and I'm now pushing his wheelchair, he'll always be my rock. And now more than ever, I want to be his. I just wish I could do more.

Chris:
I love you with all my heart. Thank you for choosing me as your friend. Every one of us is strong, but we're strong because of you.

              - Maddi

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One of the best days of my life

Chris and I met at Sunglass Hut a few years ago. He was instantly a part of the team like he had always been there. We connected over coffee, talking about our lives. I'm an extremely private person and remember thinking, "why am I sharing all this personal crap with this guy I hardly know?!" 

We bonded over losing a parent at a young age. I was 18 when my dad passed away, and he was the same age when he lost his mom to ALS. Losing a parent is not something you can share with many people. It's rare to find someone who knows what it's like to watch your hero, your strength, your first teacher, and your protector to slowly, wearily wilt away. At 13 years old, we were caring for our caregivers and then also our younger siblings. You become an adult at an early age, bypassing all the years it takes everyone else to mature. It's not an experience you want anyone else to go through. It changes you, shapes you, defines who you are and who you become. 

Finding another spirit who's lived through that loss connects you by the heartstrings that were traumatized when you were just a kid. You see hope, strength, understanding, and acceptance. I found all of those securities in my friendship with Chris. He is ALL of those characteristics, and so much more. He's bright and vibrant, charismatic and truly beautiful - inside and out. 

I treasure so many memories with Chris. Last year, we had an impromptu photo shoot at the Versace Mansion in Miami - laughing, playing around, and drinking giant margaritas. Two years ago in San Diego, my flight was delayed. He was staying for vacation a few extra days in California, so he asked me if I wanted to go hang out for a while. He had rented a car and we could go exploring. I was like, "Yea - absolutely, but there's something I really want to do. Can we please go to the ZOO?!" In true Chris fashion, he responded "OH MY GOSH. YASSSSSSS! Meet me downstairs in five minutes." I walked downstairs and Chris pulled up in a brand new Mustang Convertible, top-down, like "Let's go!!" We spent all day looking at the different animals, taking these weird lift rides to look over the elephants. It was one of the best days I've ever had. Just being able to have fun and go to the zoo without anybody even thinking otherwise.

Chris is everything you could ever want in a friend. He is everything you could ever want in your life - because of all of the good traits. The caring traits you want in somebody that you're close to, he possesses ALL of those in a way that is just PERFECT!

Chris: There is so much that I cherish about you that I know I could never explain, never share, never express. All I can hope is that you know it. That I gave you a little bit of the same comfort that you have always brought me.

                - Meghan

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We’re here for it!!

I am really struggling to really find the words to help me describe Chris. I think he's one of those people that is hard to put into words because he is so goddamn incredible. I first met Chris about 4 years ago. We were both working at the Gloucester Outlets, myself at Sunglass Hut and Chris at Express. I was recruiting for Sunglass Hut and had noticed him before working like a lightning bolt, zooming around Express, getting things done, organizing this and that... I finally got the chance to go in there and actually introduce myself. I asked him for his number trying to recruit him for my job, but he took it more as “...who is this guy coming in here during peak season trying to get my freakin' number, like what is wrong with this guy!” We joke about it all the time now...and it worked out because he still ended up coming over to our team at Sunglass Hut. Who knew that moment would work out to be one of the best connections I’ve made in my entire life!

Chris is just so energetic, inspiring, fun, and enthusiastic. He's one of those people who when you meet him, you know you never wanna let go. It's hard to talk about because it's so rare to meet people like this. I am so lucky to have gotten the chance to really get to know Chris as a person. He is always there for me. There have been moments where I wanted to give up, and he was always able to find the bright side in the worst situations. No matter what, he always lets me bullshit to him and complain about my freakin’ life. He always says he’s "here for it." Because of this, and just how inclusive and open-minded he is to anything that you want to do, we’ve gotten really close over these short 4 years. I would trust him with my life, and I know that if there was ever anything that I needed from him that he would be there for me.

Chris: You have done nothing but good for this world and brought us nothing but happiness and smiles and cheer and just ecstatic positive energy. I love you, Chris. You are and will always be my best friend.


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Fundraising team: Fight For Chris (14)

Taylor Hedgecock 
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Philadelphia, PA
Chris Courtemanche 
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Brian Cartin 
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