Jini Jordan

#Syngap1Mom #EpilepsyWarriorMom #CureSyngap1
Advocate

[Jini Jordan @JiniJordan]

https://t.co/Tc0tNiLReE
Thank you Mr. Rupp for getting video of yesterday's pep assembly! What an amazing afternoon! @sfieldathletics @springfield_com @sls_super @PentaHorticult1 @pentacareerctr @SOOhio

[Maureen McCormick @MoMcCormick7]

Joe Rogan, @joerogan
Your statement that “the ‘R’ word is back and it’s one of the great culture victories,” ignores the terrible hurt it causes to the millions of people with intellectual disabilities. This is not a victory. It is a regression.

[TalkAboutIt.org @TalkAboutItorg]

We continue our series on #LGS with @TheNotoriousEEG. Dr. Perry talks about what he might say to families newly diagnosed with Lennox-Gastaut Syndrome. @LGS_Foundation https://t.co/4h7j5nkZou #EpilepsyAwareness https://t.co/D47GXT9Ka7

[Nicholas Ferroni @NicholasFerroni]

Teachers are protesting because we know that abolishing the Department of Education would destroy the last safeguard of equal public education, leaving countless students at the mercy of underfunded, under-resourced, and deeply unequal state systems.

#departmentofeducation

[Brain Ablaze @BrainAblaze]

Is your local police department #SeizureFirstAid trained? It is crucial for law enforcement to recognize seizures. While a person with #epilepsy might be confused during/after a seizure, we're generally harmless. Contact your local PD about training. #EpilepsyAwareness

[Brain Ablaze @BrainAblaze]

If you're taking your meds, getting your sleep, minding your triggers, and still having seizures, you're doing wonderfully. We're proud of your effort. #Epilepsy isn't your fault. #EpilepsyAwareness

[Jini Jordan @JiniJordan]

.@RepMarcyKaptur @berniemoreno Medicaid is a lifeline! People with disabilities rely on Medicaid services to support them in their daily lives. We need to strengthen the program, not reduce it. #ProtectMedicaid and save lives!

[Brain Ablaze @BrainAblaze]

There are many different types of seizures! In addition to convulsions, seizures can manifest in many ways, including staring spells, confusion, unusual movements, or changes in sensation. -- What type of seizures do you experience?#InternationalEpilepsyDay #EpilepsyAwareness

[Epilepsy Foundation of America @EpilepsyFdn]

Knowing how to respond during a seizure can make a life-saving difference for someone in your community. Visit our Epilepsy Learning Portal to access free, comprehensive seizure first aid courses: https://t.co/tphNRRVkSL

[Mike Graglia 🌻 @JMGraglia]

Excited to share this publication outlining the strategy and progress of @curesyngap1. Grateful to my co-authors Aaron Harding & Kathryn Helde. Also thankful for Rodney Samaco and the editors @SageJournals
for this important #RareDisease series.
#PatientVoice #SYNGAP1 #Roadmap

[Effie Parks @OnceUponAGene]

Parents, if your child is showing signs of global developmental delay, seizures, hypotonia, spasticity, feeding difficulties, missed milestones, or microcephaly, don’t let the system waste your time.

Doctors often want to start with an MRI and delay genetic testing - but that approach can cost you valuable time, better treatment options and community.

Advocate for a Whole Exome Sequencing test first. Request the WES immediately, and while you’re waiting for the results, go ahead and schedule the MRI. The MRI is important, but it won’t give you the genetic answers you need to guide your child’s care and future treatments.

Request a WES - Nothing Less

[CURE SYNGAP1 aka SynGAP Research Fund 501(C)(3) @cureSYNGAP1]

How many people have SYNGAP1?
4Q24 #SYNGAPcensus = 🌏1,530
Details: https://t.co/QIoYs5tZV7
🇺🇸432
🇬🇧128
🇩🇪126
🇨🇳113
🇫🇷99
🇳🇱55
🇪🇸53
🇮🇹52
🇦🇺45
🇵🇱44
🇨🇦41
🇷🇺33
🇧🇷32
🇰🇷22
🇦🇷16
🇨🇭15
🇳🇴🇸🇪🇨🇴13
🇩🇰🇧🇪12
🇮🇪11
🇮🇱10
🇵🇹🇯🇵🇨🇱9
🇹🇷8
🇸🇮7
🇫🇮🇮🇳6
🇷🇸🇲🇽5
🇪🇪🇧🇾🇦🇹🇪🇬🇺🇦🇨🇿🇬🇷🇷🇴4
🇩🇴🇭🇺🇦🇪3
🇭🇰🇸🇷🇲🇦🇲🇾🇧🇦🇸🇰🇸🇬🇭🇷2
🇹🇹🇩🇿🇻🇪🇽🇰🇸🇦🇲🇨🇶🇦🇳🇿🇦🇲🇮🇷🇵🇪🇮🇸🇹🇭🇹🇼🇰🇿🇹🇳🇦🇱🇮🇶🇬🇹1

If we missed you, let us know!
#SYNGAP1 #SYNGAPCensus #CureSYNGAP1 @SyngapAus @SyngapGlobal @SRFEurope @SyngapAmericaLatina

[Brain Ablaze @BrainAblaze]

Learning proper seizure first aid is the gift that keeps giving. #EpilepsyAwareness

It's easy!
https://t.co/xrBAnt7hlK

[Epilepsy Society @epilepsysociety]

If you see someone having a seizure, remember:

Stay CALM
CUSHION their head
CALL for help

Our aim is to make sure everyone is #seizuresavvy and knows how to support someone with #epilepsy 💜

[Epilepsy Society @epilepsysociety]

If you see someone having a tonic clonic seizure, remember:

Stay CALM
CUSHION their head
CALL for help

Our aim is to make sure everyone knows how to support someone with #epilepsy 💜

For more info: https://t.co/ZtJhRWwNmd

[Brain Inflammation Collaborative @BrainInflCollab]

Between 2% and 14% of COVID survivors develop a syndrome called postural orthostatic tachycardia syndrome (POTS) (1).

However, it is commonly attributed to stress and anxiety.

This is the surprising story of how POTS (and possibly Long COVID) might be linked to an even rarer syndrome...🧵

[Epilepsy Society @epilepsysociety]

You can help our research into SUDEP to save lives in the future: https://t.co/P1hVKMNTkO

Our Christmas appeal is difficult to read, however the family in this story want people with and without epilepsy aware of the risks and what is being done to prevent SUDEP. 💜

[Brain Ablaze @BrainAblaze]

The community doesn't like to talk about it much, but Epilepsy can be fatal. Almost 1 in 1000 people with Epilepsy die each year from #SUDEP alone. Many more succumb to Status Epilepticus, suic*de, and epilepsy-related accidents. #EpilepsyAwarenesMonth

[Dublin Ohio @DublinOhio]

The Dublin Link will glow purple tonight to raise epilepsy awareness. 💜

💡 @EpilepsyFdn states more than 140,000 Ohioans have epilepsy, which is the fourth most common neurological disorder in the world.

[Epilepsy Foundation of America @EpilepsyFdn]

In honor of National Epilepsy Awareness Month, sign up for a training at https://t.co/faVi3CO4gC and encourage others to get certified in Seizure First Aid. Together, we can make a difference! #NEAM2024 #ShareYourPurplePower

[Brain Ablaze @BrainAblaze]

#Epilepsy can be fatal. - What was your reaction when you first learned about Sudden Death in EPilepsy (or #SUDEP)? #EpilepsyAwarenessMonth

https://t.co/uRIMif6eSB