Hi #DisabilityTwitter! For #DisabilityPrideMonth 2024 I chatted w/ 60+ other #Disabled people about their diagnoses. Overjoyed and honored to hear stories from 7 nations. I loved doing this work.
This is True Disabled Story!
https://t.co/p34l9LOAy3
A series about Cyke 🥰
During from the ashes 😑
Not a fan of the art (oh no is that beast?!) but I want to support X-men solos and my FLCS so I will subscribe.
Thanks for sharing more info about those of us living with CCHS!
In the US, we with CCHS often choose to get the trach out- especially as we age into adolescence and adulthood
Folks with CCHS can also have cardiac pauses and vision issues too
@RareRevolutionM@keepmebreathtwt
CCHS vs Sleep Apnoea 🌙💤
We’re often asked if Congenital Central Hypoventilation Syndrome (CCHS) is the same as sleep apnoea — but it’s very different. 🌬️💙
✨ Sleep Apnoea - usually caused by an airway obstruction.
✨ CCHS - a rare neurological disorder where the brain doesn’t send the right signals to breathe.
Understanding the difference is vital to raising awareness and support for children and families living with CCHS. 💪💙
#KeepMeBreathing #CCHS #SleepApnea #KnowTheDifference #RareDiseaseAwareness #BreatheForCCHS #SaturdayTakeover
https://t.co/ttTIAE6RD3 @keepmebreathtwt
I am not here much.
Turns out I liked reading tweets more than tweeting.
Updated the bio to stay current but otherwise
don't give creeps your energy &
go do something nice for philadelphia today
Email in my inbox: "Nico, here's how to use your Venmo credit card!"
I know how to use my Venmo credit card. I am the Olympic gold medalist of using my Venmo credit card, that's the problem.
I love reading and I love @FreeLibrary!
The Richmond Free Library here in #philadelphia is at risk of roof collapse and has not had heat for several days.
Roxborough branch has also had no heat for a while.
How can we better fund & maintain our libraries?
Heard from one of my disability commissioners last night -- another year, another Christmas village inaccessible to wheelchair users.
Sad that this issue with CV keeps happening.
Disabled people want to shop locally! Hoping we can chat w/ CV and ensure access for the future.
100% covered bus stops with benches. 100% accessible stations. $1 fares on game days and holidays. All SEPTA cars and stations that need repair get it. We build the Roosevelt blvd subway, hire more drivers and increase service frequency. We expand routes each year. SEPTA = access
Philadelphia can breathe a big sigh of relief. Thanks to @GovernorShapiro, January 1st will not mark the beginning of the end of safe, frequent, and reliable mass transit in our city. I am grateful to the Governor for "getting stuff done" and investing in the mobility and economic success of our communities.
We avoided the imminent transit death spiral, but our fight for fully funded public transit isn't over. My constituents disproportionately rely on SEPTA to get to work, school, and other essentials. Too much is on the line to be back in this situation again. When lawmakers return to Harrisburg, Senate Republicans must come to the table and make a deal that keeps Pennsylvanians moving.
There’s a lot going on — and there’s a lot that folks need from their government.
I want to hear what you need.
My number is 717-788-8990 — send me a text with your thoughts on how we can keep getting stuff done for you.