JC
jcny79.bsky.social
JC
@jcny79.bsky.social
Just a girl diagnosed with ALS 3/30/22. Living life day by day while I continue to adapt and process this journey I was given
Thats all I have for today!
#ALS
October 10, 2025 at 8:37 PM
In honor of #ALSAwarenessMonth. 2022. I have a "floppy big toe" I keep tripping. No, you have foot drop. MRIs, bloodwork,3 EMGs. 3rd Neuro, His hands on mine. Head down. Quietly says. You have motor neuron disease #ALS at the age of 43. Never take things for granted. 🙏
#EndALS
May 1, 2025 at 11:39 AM
Heartbreaking news! #ALS does not discriminate. We need effective treatments!

#endALS
Eric Dane, the actor known as the handsome plastic surgeon nicknamed McSteamy in “Grey’s Anatomy,” told People magazine that he has been diagnosed with ALS.
Eric Dane, McSteamy of ‘Grey’s Anatomy,’ Says He Has A.L.S.
The actor, who plans to return to his role on the hit show “Euphoria,” told People magazine about his diagnosis.
www.nytimes.com
April 11, 2025 at 12:03 PM
Reposted by JC
March 10, 2025 at 10:35 PM
Today is a day where I HATE #ALS.  To be out in this chilly NY weather. Laughing, having fun while shivering . Enjoying a nice drink at the winery. Dancing to music. You took this from me #ALS.  Why? Why are you so damn cruel? Rant over!!
End #ALS
February 1, 2025 at 7:17 PM
Reposted by JC
We are building an #ALS community for persons living with ALS and former/current caregivers in Slack called ALStogether. Slack is an incredible platform to chat and connect. Would love for you to join us.

www.alstogether.org
​ALS Together
www.alstogether.org
January 23, 2025 at 11:28 PM
Reposted by JC
Happy New Year one and all!

Good night moon.
January 1, 2025 at 3:39 AM
December 31, 2024 at 10:26 PM
What a blessing that would be 🙏

#endALS
December 25, 2024 at 4:09 PM
Year full of emotions, twist and turns, ups and downs..!

#ALS
December 15, 2024 at 12:49 AM
Reposted by JC
December 8, 2024 at 3:27 AM
Reposted by JC
I know some of you have seen our documentary but for those who haven't seen it or want to see it again, I hope you will click on the link below and watch it. When you do, I would love to hear what you thought of it. Thank you!
www.primevideo.com/region/eu/de...
Watch For Love & Life: No Ordinary Campaign online – Prime Video
A deeply moving documentary illustrating the transformative power of love, hope and activism. The film follows Brian Wallach and his wife Sandra after his ALS diagnosis at age 37. Anchored by a deep l...
www.primevideo.com
November 25, 2024 at 8:42 PM
Reposted by JC
Sometimes I feel bad for myself, and then I remember that I have lived with ALS for more than 7 years. And I am grateful to still be here.

Good night moon.
November 21, 2024 at 1:49 AM
Reposted by JC
People with terminal #RareDiseases urgently need DISRUPTIVE policy change & a conditional approval pathway at FDA.

32k people with 100% fatal #ALS like Brian Wallach are #DyingWaiting when drugs could help them live.

Humanity & science can co-exist.

#EndALS
@bsw5020.bsky.social
November 17, 2024 at 9:55 PM
Reposted by JC
Love Basketball and Hate ALS? We have great news! Hoops4ALS is partnering with a bunch of great college teams to help spread awareness and raise much needed funds for ALS research! Can't make the game? They are partnering with a local Ales for ALS brewery with a Watch Party! DM for more info!
November 14, 2024 at 6:20 PM