Evan Campa @EvanCampa Twitter profile

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Evan Campa

2 years

For a glimpse into how I am doing, my latest blog post is up “I am still in disbelief that this is happening to me, to us” Click below to read more:

Post 12: Awful, How are You? — hey it's ev

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www.heyitsev.com

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Evan Campa

@EvanCampa

2 years

Behind the scenes of an ALS photo shoot: I’m leaning against the railing so I don’t fall over. I can’t smile on command so Eben’s whispering inappropriate jokes to make me laugh But maybe we nailed it? #ENDALS #endMND

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Evan Campa

@EvanCampa

2 years

I started to fall and then my husband caught me And then he sang “if you fall I will catch you I’ll be waiting…time after time” And with him…this hard life with #ALS feels doable

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Evan Campa

@EvanCampa

2 years

I’m 41 today 🤯 Normally not mind blowing but 4 years ago I was given 2-5 years to live so I didn’t know if i would meet today I’ll fight for many more birthdays and not take a single digit for granted #endals

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Evan Campa

@EvanCampa

3 years

Back in my happy place. This “boat” is a game changer and I spent hours floating in the sea. Not today, ALS

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Evan Campa

@EvanCampa

3 years

I can’t properly do my makeup or hair anymore, and my smile has gotten crooked from ALS/MND, but I got a haircut and was feeling cute so here I am, imperfectly me #endals #DisabilityTwitter #mnd

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Evan Campa

@EvanCampa

2 years

Happy 8th anniversary to my dream man. Half of our years have been in sickness, half in health It’s not the love story I envisioned, but when diagnosed with fatal #ALS 4 years ago we began to rewrite our story 🧵

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Evan Campa

@EvanCampa

3 years

This beach wheelchair allowed me to go in the ocean... and it. Was. MARVELOUS

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Evan Campa

@EvanCampa

3 years

I’m 4️⃣0️⃣ today. What a nice plump number to make it to. When I was given 2-5yrs to live 3yrs ago 40 was 40❓and today it is 40‼️‼️‼️

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Evan Campa

@EvanCampa

2 years

It took me 7 tries and max concentration I wanted to scream because it’s so hard to write with hands weakened from #ALS Then I was frustrated that I can’t even physically scream But, finally, I did it. And I’m proud of it.

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Evan Campa

@EvanCampa

2 years

Every night the 3 of us watch a show (on a Pokémon kick right now). It’s my favorite part of the evening. Despite not being able to walk or talk very much, I feel almost like a “normal” mom in these moments But can we #endALS already? It shouldn’t have to be this way

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Evan Campa

@EvanCampa

2 years

So grateful to have walked my kiddos to their first day of school. The atmosphere of excitement, nervousness, sadness…all of it I got to experience against all odds and I will cherish it forever ❤️

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Evan Campa

@EvanCampa

3 years

Had a fall yesterday that, while a minor injury, resulted in a sad scene of me lying in a pool of blood while my small children comforted me This is why I fight to #endals : so no children are put in this impossible, terrifying situation

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Evan Campa

@EvanCampa

1 year

Five years into my terminal illness of #ALS i hopped on a plane to Mexico City to celebrate my hubby’s 40th, drank mezcal cocktails, and got my first tattoo Cheers to living y’all

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Evan Campa

@EvanCampa

2 years

I miss standing. I miss walking. I miss talking. I miss looking cute. I miss NYC. But smoking? 10 years quit today. Don’t miss it at all.

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Evan Campa

@EvanCampa

2 years

The most helpful advice I got upon being diagnosed with a 100% fatal, degenerative disease: ✨Don’t grieve that which hasn’t happened yet✨ Applicable to so many situations beyond #ALS

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Evan Campa

@EvanCampa

2 years

Sometimes I crop pics to momentarily look “normal” how I did before #ALS rendered me paralyzed Anyone else try to temporarily escape their reality in this superficial way?

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Evan Campa

@EvanCampa

3 years

A gal with a terminal illness, her walker named Coco, a drink station for Cardamom Palomas, and 4 of her best friends coming over Not today ALS. Not. To. Day.

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Evan Campa

@EvanCampa

2 years

At my last clinic visit I learned I gained 8lbs, bringing me to 140, the most I’ve ever weighed After spending a lifetime wanting to be thin I’m finally embracing all the curves and squishiness because I am ALIVE F U ALS

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Evan Campa

@EvanCampa

3 years

Upon learning we have 2-5 years to live, we wait 5 mos to receive a social security check with an ALS diagnosis because of a “mandatory waiting period.” ALS doesn’t wait. 370 members of Congress, a vast majority, want to change that. @speakerpelosi , Call the vote!

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Evan Campa

@EvanCampa

2 years

Had a much needed ladies night last night I can’t cut my bangs or paint my nails anymore so my girlfriends did it and I feel SO good Cocktails, delicious food, and a rom com later, I am refreshed and grateful for friends like these #ENDALS #endMND

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Evan Campa

@EvanCampa

3 years

7 years later: 2 kids, numerous houses and jobs, 3 states and 2 countries, and one terminal diagnosis #ALS Not giving up now, not giving up ever ♥️

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Evan Campa

@EvanCampa

3 years

The weight of terminal illness is lightened by the weight of a tiny body

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Evan Campa

@EvanCampa

3 years

Thankful to be alive, breathing unassisted, and that my husband has a job & health insurance The pandemic and ALS have shown me that those things I once took for granted are big big BIG things Happy Thanksgiving! ❤️Evan, Eben, Mae, & Reuben

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Evan Campa

@EvanCampa

3 years

Yesterday was a rough day. I was fed up with all the things I wish I could do but can’t This morning my 4yo gave me a trophy for winning a race (unclear what kind) & my 6yo proclaimed me the best mom for showing her how to use emojis on my phone Here’s to a better day today

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Evan Campa

@EvanCampa

2 years

Another day I am so happy and lucky to be here for: my baby is 5 today!!! Reuben brings unbridled joy and humor to our life every day. I wish you wonder and love always, little one ♥️

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Evan Campa

@EvanCampa

2 years

For my birthday, dear friends threw me a surprise party at a dreamy plant store. We ate, drank, laughed, and bought 🪴🪴🪴 It was magical and a reminder of all the love in my life worth kicking #ALS ass for ♥️

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Evan Campa

@EvanCampa

2 years

Senate has passed #ACTforALS !!! Make no mistake, patients were integral to making this happen…we are fed up and ready for change!!

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Evan Campa

@EvanCampa

2 years

I can’t put up lights due to ALS but I can shop online and order ppl around to execute my vision with the best of ‘em Merry Christmas from us and the Peanuts gang!!🎄❄️♥️

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Evan Campa

@EvanCampa

2 years

It’s not the life, or love story we had planned. In fact, I often think “how the #*!$ is this happening to us?!” But we are forging a new way to do life together and I keep growing more in love with you. Happy Valentine’s Day @ebencathey 💞💘💝

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Evan Campa

@EvanCampa

4 years

I’ve been married 6 years but yesterday I threw myself a fake bachelorette party because 2020 and ALS so why not and it was amazing

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Evan Campa

@EvanCampa

4 years

My neurologist asked for feedback (awesome) on how their team was doing. So I said: Don’t use the words “yet” and “still” e.g., “Can you write still? Do you drool yet?” Omit these words and the meaning is the same. With them the focus is on inevitable decline. ❤️Ev

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Evan Campa

@EvanCampa

2 years

May is #ALSAwarenessMonth but for people living with it, awareness is every month, every day, every minute Aware of: Muscles wasting away Losing independence Breathing decreasing Voice disappearing Lack of treatments Time running out #endALS

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Evan Campa

@EvanCampa

2 years

We got dolled up for a wedding I miss dancing at weddings, talking to people A newfound joy at weddings? Interacting with drunk people, it’s really entertaining and they do all the talking

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Evan Campa

@EvanCampa

2 years

Holding space for fellow ppl w/ ALS, as today can be hard…maybe not being able to eat the tasty food or sing the songs or do a thousand other things. Grieving the “you” you thought you would be today (I know I do) 1/2

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Evan Campa

@EvanCampa

2 years

My daughter turned 7️⃣! I love her more each day. She is curious, feisty, and a leader… I’m so grateful to witness your life unfold ♥️

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Evan Campa

@EvanCampa

4 years

It’s hard to describe what it’s like simultaneously preparing for death and holding limitless hope...but sort of like gravity both letting you fall endlessly and the complete lack of it allowing you to float freely #endals #HR7071

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Evan Campa

@EvanCampa

3 years

I miss making costumes. Should I miraculously recover from #ALS someday, my hot glue gun will be very busy #ENDALS

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Evan Campa

@EvanCampa

4 years

I was feeling apathetic about voting for so many reasons: I’m not in a swing state, I’m dying from an incurable disease,the system is flawed, it’s hard for me to go out, breathing is harder w/ a mask But it’s my duty to exercise my right to vote so vote I did. And it felt good

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Evan Campa

@EvanCampa

2 years

Dear @US_FDA , when delaying the @AmylyxPharma decision by 3 months did you consider that #everypointmatters ? One point is the difference between my children having a mother and…not It’s painfully simple, for a drug that is safe and effective

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Evan Campa

@EvanCampa

3 years

Traveling with ALS is NOT easy...but when watching the littles play in the pool while floating with a #whiteclaw in my paw, it’s 100% worth it

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Evan Campa

@EvanCampa

9 months

So glad to be alive and sort of kickin for this day, little loves of mine

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Evan Campa

@EvanCampa

1 year

Still alive and kickin, just spending less time on twitter and more time on things like teaching my kiddo to take selfies 🤪 #nailedit #ENDALS

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Evan Campa

@EvanCampa

2 years

I have a new nephew y’all! Welcome Wilder. As I held him I couldn’t help feeling overwhelmed with gratitude to be here to meet him.

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Evan Campa

@EvanCampa

3 years

This. Guy. @ebencathey works full time, cooks, cleans, takes care of the kids and me. It is hard. I wish it wasn’t so. He does it with unreal grace, patience, & perseverance. He & all cALS deserve an end to ALS, too. Pictured: partaking in crucial self care #caregiverawareness

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Evan Campa

@EvanCampa

3 years

We made it and I love it so

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Evan Campa

@EvanCampa

2 years

Why do I fight for access to promising treatments? For more of this, of course

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Evan Campa

@EvanCampa

2 years

Believe me, I’d rather not be tweeting about my bathroom use. I’d also rather not have a fatal disease or be disabled But here I am. If an injustice happens to me, it’s happening to many others. If we don’t speak up, nothing will change

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Evan Campa

@EvanCampa

4 years

2 years ago my doctors probably wouldn’t have believed I’d be giving my 40lb son a horseback ride today. But here I am (slowly) (and awkwardly) doing it. And it’s probably a good thing he is wearing that helmet 😂 #endals #nurown #axeals #iamals

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Evan Campa

@EvanCampa

2 years

I look at this picture & feel so much gratitude for what I previously took for granted Holding a cup & drinking Turning book pages Driving a scooter Cracking up Nature And most of all, people I love dearly who don’t shy away from the hard stuff #ENDALS

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Evan Campa

@EvanCampa

2 years

It takes a LOT to get the 4 of us somewhere by 9am But when you hear there are live mermaids…you do what it takes to get there, #ALS be damned

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Evan Campa

@EvanCampa

3 years

Every morning I drink an experimental drug made of gold nanocrystals ✨✨✨Surely something so fantastical will slow the havoc ALS wreaks on my body? *please don’t let it be placebo*

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Evan Campa

@EvanCampa

2 years

And so, as I write out the revisions to our love story, I think we’re doing ok ❤️

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Evan Campa

@EvanCampa

5 months

My 3 everythings ❤️❤️❤️ #endals

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Evan Campa

@EvanCampa

3 years

Never thought I would be 40 w/ a fatal illness while raising young kids...but here I am Overwhelmed & humbled by support from friends, family, strangers. Grateful for our dear friends that created this I’ll repay in acts of kindness as best I can ♥️Ev

Support Evan & Her Family in the Fight Against ALS, organized by Stephanie Teatro

In 2018, our dear friend Evan Campa was diagnosed with ALS (amyotr… Stephanie Teatro needs your support for Support Evan & Her Family in the Fight Against ALS

www.gofundme.com

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Evan Campa

@EvanCampa

3 years

Making calls to Santa...put me down for house plants, bird feeders, and treatments for ALS while your at it little one

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Evan Campa

@EvanCampa

4 years

“Mama, I wish that someday you will dance” - Mae, age 5 This is why I need #HR7071 , Accelerating Access to Critical Therapies for ALS Act, to pass. @RepMikeQuigley @JeffFortenberry @iamalsorg @stevens_nation @alsadvocacy @realDonaldTrump

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Evan Campa

@EvanCampa

4 years

“I love you you’re my best friend” - Reuben, age 3 He says this about a dozen times a day. Could there be a more beautiful string of words? I’m going to fight to stick around as long as possible to keep hearing these words 💚 #ENDALS

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Evan Campa

@EvanCampa

3 years

Every day I make decisions: to focus on what I can do,be grateful, enjoy my time. I’m mostly happy But make no mistake: ALS is devastating. It has devastated me & those I love. It’s cruelty is relentless & I make space for rage, which we need more of in this fight #ENDALS

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Evan Campa

@EvanCampa

2 years

Our family does hard things, thanks to help from the best friends ever Hello Minneapolis, it’s good to be here

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Evan Campa

@EvanCampa

2 years

Ladies out at the theater. I had not left the house in many days and really needed this 🦁👑 thanks @tpac for great accessibility and accommodations 🌟

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Evan Campa

@EvanCampa

3 years

My maemoo on her first day of first grade. I feel so grateful to be here to see it, and ride in a golf cart to drop her off. A proud, teary mama over here 🥲♥️

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Evan Campa

@EvanCampa

3 years

Happy Halloween from Spider-Man, Captain America, a wizard, and Wonder Woman on her wondermobile

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Evan Campa

@EvanCampa

3 years

This is the most powerful thing I have ever seen. If you do one thing today, watch @bsw5020 and @sabrevaya testify before Congress about the urgent needs of the ALS community Get angry with us and join a movement @iamalsorg

Congressional Hearing with the FDA

Brian Wallach and Sandra Abrevaya testified before Congress during the House Energy and Commerce Health Subcommittee hearing on "The path forward: advancing ...

www.youtube.com

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Evan Campa

@EvanCampa

2 years

Thank you @tamburintweets and @axios for covering the ALS community’s victory and listening to our story! Thank you @iamalsorg , @bsw5020 , @sabrevaya for your leadership #ACTforALS !!!

Axios Nashville - 1 big thing: ALS bill brings hope

After traveling for another round of experimental treatment for her ALS, Evan Campa arrived home to news she couldn't believe.

www.axios.com

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Evan Campa

@EvanCampa

8 months

Thank you for prioritizing accessibility @DisneyCruise ! 5 years into my #ALS diagnosis, never in a million years did I think I’d ride a water slide above the ocean but you made it happen. I was able to make memories to last a lifetime with my kids 💛❤️🤍🖤

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Evan Campa

@EvanCampa

4 years

Imagine knowing HOW to swim, WANTING to swim, but your brain can’t communicate to your muscles to execute this This is #ALS and it’s maddening Yet being in the water with my favorite ppl...is amazing #endals

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Evan Campa

@EvanCampa

3 years

@sabrevaya @bsw5020 I absolutely hate having ALS... but, and this may sound weird, I feel lucky to have it at a time when you two are leading the fight and giving me so much inspiration. Will 💯 support y’all however we can, always

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Evan Campa

@EvanCampa

3 years

Wow wow wow @sabrevaya and @bsw5020 absolutely crushed it. This is true leadership and action in the fight against ALS THANK YOU both!!! ♥️

IAMALS 2021 Congressional Public Witness Testimony

null

www.youtube.com

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Evan Campa

@EvanCampa

2 years

. @Fly_Nashville there is not an accessible bathroom in concourse A or B & access is restricted to other concourses. So I had to use the men’s restroom with my husband, which is degrading. It is unacceptable to have one stand alone accessible bathroom for an entire airport 1/3

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Evan Campa

@EvanCampa

4 years

It wasn’t until I was grieving ALS that I realized the stages of grief are not linear Instead denial, anger, bargaining, depression, and acceptance are in one of those huge spinning bingo balls getting plucked out at random and my card has all of them

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Evan Campa

@EvanCampa

4 years

One of my neurologists said the other day “don’t get me wrong, it’s never a good time to have ALS, but there are more promising developments happening now than ever before” Regardless of if those impact me directly, this is the kind of thing I love (and need) to hear! #endals

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Evan Campa

@EvanCampa

2 years

When ALS is cured, @RepMikeQuigley along with @bsw5020 and @sabrevaya will be a BIG part of the story of how it came to be Cannot thank y’all enough for your ferocious perseverance

Mike Quigley

@RepMikeQuigley

2 years

Not today ALS. Not today. #ACTforALS

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Evan Campa

@EvanCampa

4 years

Introducing: Celine ✨ She is a game changer. We now go on frequent family walks which is EVERYTHING to me ❤️🍁🍂 Inspired by: @bsw5020 ’s sleek ride and the sheer power and grace of @celinedion #endALS

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Evan Campa

@EvanCampa

3 years

Y’all. It’s this remarkable man’s birthday!! Here’s wishing him a year full of IPAs, tank tops, music playing, cuddles, SPORTS, & raucous times with those he loves You are the super (human) glue that holds our family together and I love you @ebencathey ♥️

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Evan Campa

@EvanCampa

4 years

If I live to see my kids be teenagers who sulk, slam doors, and shout that they hate me...I will be so frickin happy #HR7071 #endals #MND

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Evan Campa

@EvanCampa

3 years

Turns out my bucket list is just more ordinary moments like this, being served neon play doh pizzas

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Evan Campa

@EvanCampa

3 years

I used to think I would put drawings in kids lunches because I was a “fun mom” Recently I did it because I realized I love drawing, I love my kid, & against all odds I’m able to hold a pen & draw so what the hell have I been waiting for?! #ENDALS

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Evan Campa

@EvanCampa

3 years

I can’t do my own ponytail and my husband is a novice but friends find a way to make it happen #EndALS #endmnd

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Evan Campa

@EvanCampa

2 years

I always knew I wanted to read the Harry Potter books to my kids. I couldn’t have imagined that I wouldn’t be able to due to ALS/MND taking my voice. So, my 6 year old daughter and I listen to the audiobooks, bonding in a new way 1/3 @jk_rowling #endMND #endALS

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Evan Campa

@EvanCampa

2 years

Wish me luck and no falls and no awful airport situations…Mexico City here we come!

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Evan Campa

@EvanCampa

3 years

Kicking off Sunday by kicking ALS by riding the bike as Ironman and Bumblebee on a mission to defeat Rhino

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Evan Campa

@EvanCampa

2 years

Great news tonight… #ACTforALS passed in the House!! Next stop, Senate. Finally, things are happening and hope is rising for ALS #ENDALS #ENDMND

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Evan Campa

@EvanCampa

4 years

Nearly 2yrs post diagnosis, still able to do a 200 piece glitter mermaid puzzle with my daughter. BAM!! Take that #ALS ! @iamalsorg @stevens_nation @everything_als @SteveGleason @HopeLovesCo #MondayMotivaton #Nurown

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Evan Campa

@EvanCampa

4 years

“You can believe the diagnosis but never believe the prognosis” - Deepak Chopra I am not fixated on the 2-5yr average ALS life expectancy because the mind is a powerful force Grateful the neurologist who diagnosed me at Hopkins doesn’t believe in giving timelines either 💛

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Evan Campa

@EvanCampa

4 years

The #Nurown trial included: - 14 trips to MGH - 1 pelvic bone marrow extraction - 3 spinal injections of drug or placebo - so many spinal taps I lost track - countless blood draws Do I know if I got the real thing? No. Would I do it all over again? YES. *ACCESS IS HOPE*

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Evan Campa

@EvanCampa

3 years

May is #ALSAwarenessMonth I’m glad it exists but gawd it’s tough having a month where the horrors of it (which I try not to focus on) bombard me on social media But I want everyone not in this unlucky club to pay attn to the horrors and take action by supporting @iamalsorg

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Evan Campa

@EvanCampa

3 years

I grappled w/ posting about my fall. But I’m in this to not only share the positive & uplifting, but the low points, the raw humanness of life, that give rise to richer joy Thanks for being along for the ride - smooth countryside drives & car crashes alike 💞ev

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Evan Campa

@EvanCampa

3 years

Our flight was canceled along with thousands of others on @SouthwestAir so we drove 14 hours to the beach (NOT easy with ALS) Here is our crazy crew of 8 making the best of it at Buc-ees, which I am now obsessed with @bucees

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Evan Campa

@EvanCampa

2 years

Best gift I’ve ever gotten, from my 6 year old Left: the wrapping Right: me in a snow globe, holding a hotdog

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Evan Campa

@EvanCampa

3 years

Can we stop accepting & chuckling about how dry most neurologists are? If you are working w/ vulnerable ppl going thru unimaginable degeneration, that’s not acceptable Why not teach skills in listening, compassion, & speaking positively in med school & beyond? - ALS patient

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Evan Campa

@EvanCampa

3 years

Our littlest love turned 4️⃣ His joyful spirit is infectious and I feel so lucky to be here for it ❤️

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Evan Campa

@EvanCampa

5 months

After 3 long years of waiting and wondering, I and others have finally been unblinded from the #Nurown trial I feel closure finally.

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Evan Campa

@EvanCampa

3 years

Flashback in honor of #LouGehrigDay to the time I took a bus while pregnant with a 1.5 year old ON MY OWN to the @Cubs World Series parade Yes it makes me a little sad that I can barely walk now due to ALS, much less go on such an adventure...but damn I’m glad I did that

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Evan Campa

@EvanCampa

3 years

I’m grateful I was in the Nurown phase 3 trial. But I went thru an awful lot - lumbar punctures, spine injections, bone marrow aspiration, blood draws, flight & hotel costs And it may have been a placebo @Cylebo I believe in Nurown. When can I expect access? @BrainstormCell

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Evan Campa

@EvanCampa

2 years

One person living with ALS and two widowed by ALS Truly the worst club with the best people Always a treat to see @nicolecimbura and Staci @BWayneGal ♥️♥️♥️

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Evan Campa

@EvanCampa

2 years

What a beautiful piece @samstein . Got chills and teary reading this. @sabrevaya and @bsw5020 are masterful change makers⚡️💫✨

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Evan Campa

@EvanCampa

3 years

Very excited to be a part of this. We need more drugs in the pipeline STAT!

Vanderbilt Neurology

@VUMCneurology

3 years

Local family shares their story and shines in campaign to establish an #ALS basic science research program at Vanderbilt University Medical Center @VUMC_Insights @EvanCampa @TNneuro @LiveLikeLou4

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