Corey Baysden
@CoreyBaysden
Followers
5,667
Following
5,332
Media
75
Statuses
532
#RareDisease mom to Saylor w/ #Syngap1 🧬 Director of Community Activation @cureSYNGAP1 🧠Working 2 find a cure for #epilepsy #autism #hypotonia #nonverbal #ID
North Carolina, USA
Joined July 2021
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Last Seen Profiles
So many of us rare parents long to hear these words! Today was Effie’s day! What a glorious thing to hear ❤️
My 5 year old son not only put two signs together but he SAID the words too! And clearer than ever. 💜 This was a first and I know so many of you understand the feeling in my heart right now💗💗💗
#RareDisease
#CTNNB1
#Inchstones
16
4
69
3
5
44
So proud of this sweet girl!
#syngap1
#AutismAwareness
#intellectualdisability
#Neurology
@cureSYNGAP1
5
7
42
Saylor isn’t able to ride a trike yet. Thankful for our shotgun kids bike seat so we can ride around the hood! Link in thread!
#syngap1
#Autism
#hypotonia
#epilepsy
@cureSYNGAP1
1
8
36
People with
#Syngap1
are sensory seekers! Saylor had a great playing with the pumpkin guts!
#autismawareness
#EpilepsyAwareness
#RareDisease
#sensory
#sped
@cureSYNGAP1
2
10
36
This
#syngap1
warrior is having a 48hr VEEG
@Duke_Childrens
. Such a trooper!
#EpilepsyAwareness
@cureSYNGAP1
2
7
34
This little girl LOVES her
#ABA
therapist! Every day she squeals with excitement!
#Austim
#Epilepsy
#syngap1
#RareDisease
#Hypotonia
#NeuroTwitter
@cureSYNGAP1
1
7
31
Saylor had her first appointment yesterday with Dr. Zafar
@Duke_Childrens
Neurology. He was very thorough, genuinely interested in learning about
#syngap1
and helping to improve her
#epilepsy
. Thankful for doctors who care 💙
#Autism
#ID
#RareDisease
#nonverbal
@cureSYNGAP1
2
5
30
It’s
#RareDiseaseDay
! As a parent, I know firsthand the struggles and uncertainties that come with this journey. But I also know the strength and resilience that we can find in each other, in our communities, and in the power of advocacy!
@cureSYNGAP1
#syngap1
1
7
30
Saylor received her 1st dose
#Ravicti
thanks 2
@DrZachGrinspan
@WCMpeds
. Leading our 1st
#SYNGAP1
drug trial. Ravicti, orig. 4 urea cycle disorders, now explored in preventing seizures and helping cognition. We 😍 this opp. & remain hopeful for 🙌 outcomes!
@cureSYNGAP1
4
2
28
Another day of pure excitement for
#ABA
! Saylor’s little wave is getting better! ❤️
#Syngap1
#autism
#epilepsy
#neurotwitter
#RareDisease
#ID
6
5
30
Syngap kids aren’t usually big nappers, but this time change has made it hard for Saylor to finish dinner 😂
#syngap1
#epilepsy
#autism
#GDD
#RareDisease
@cureSYNGAP1
0
3
27
Finally home from her 48hr VEEG
@Duke_Childrens
! What a great team they have there! I’m officially a
@DukeUniversity1
fan!
#RareDisease
#EpilepsyAwareness
#syngap1
@cureSYNGAP1
1
4
26
Seizures don’t always look like they do in the movies. Sometime they are silent, a distant stare, a sudden drop to the ground or just an eye flutter. Saylor’s are eye flutters and dropping. She was having over 180 daily now less than 5.
#syngap1
@cureSYNGAP1
3
3
26
Many, with
#Syngap1
, have sleep issues. Saylor had a full day of
#prek
&
#aba
therapy and passed out. Naps are definitely a rarity!
#AutismAwareness
#EpilepsyAwareness
#sped
@cureSYNGAP1
0
5
26
Need 2 brag on
@cureSYNGAP1
!We had our 1st visit w/Dr. Lunsford,Ped Physiatrist,
@Duke_Childrens
. Gave him our med doc.Said it’s the best one he’s ever 👀 & going 2 share it w/others. Loved that all the diff med considerations are inc. Helped him 👀 the full scope of her needs!
4
7
26
Despite increasing meds, Saylor is still having a bunch of seizures. Here’s what hers look like…
#Syngap1
#epilepsy
#raredisease
#neurotwitter
#id
#AutismAwareness
@cureSYNGAP1
8
7
25
Saylor’s new fav thing is to help cook dinner! She loves all the sensory stimulation! 💜
#sensory
#syngap1
#epilepsy
#id
#autism
#AutismAwareness
#NeuroTwitter
#spd
@cureSYNGAP1
3
7
26
Saylor working those fine motor skills and getting better every day! Awesome teachers help make the difference and build confidence! 🧠
#SYNGAP1
#epilepsy
#IntellectualDisability
#autistic
#AutismAwareness
#hypotonia
#RareDisease
#NeuroTwitter
@cureSYNGAP1
🧬
2
5
22
We were able to use a
#CarolinesCart
today, for the first time! So grateful! Definitely helped me out & Saylor loved it!
#syngap1
#Autism
#epilepsy
#ID
@cureSYNGAP1
4
7
21
This girl is a trooper! Nailed surfing today and handled the wipeouts like a 💪. Thank you to all of the amazing volunteers 💜🧬
#adaptivesports
#adaptivesurfing
#adaptivesurfprojectnc
#syngap1
#epilepsy
#id
#autism
@AdaptiveSurf
@cureSYNGAP1
2
5
21
Thankful for the
@AutismSocietyNC
in Newport! The kids had a great time at their Trunk or Treat!
@cureSYNGAP1
#autism
#Epilepsy
#ID
#Genetics
#Neurodiversity
2
5
21
Saylor got her AAC device! Now she can “talk” to us and the girl has found HER voice! She is excited to tell us what she wants! I can only imagine how liberated she must feel! A true Christmas blessing! 💜🧬
@cureSYNGAP1
#nonverbalcommunication
#epilepsy
#Autism
#NeuroTwitter
1
6
21
#Syngap1
makes daily tasks difficult. Saylor has been working on this skill for the past two school years, but is making progress!
@cureSYNGAP1
#learning
#IntellectualDisability
#AutismAwareness
#Autism
#EpilepsyAwareness
#id
1
4
19
This sweet
#syngapian
is full of smiles today!
@cureSYNGAP1
#Syngap1
#EpilepsyAwareness
#Autism
#intellectualdisability
#raredisease
2
1
18
Wasn’t able to get it on video but Saylor “sang” for the 1st time today! In her own way she hummed/babbled the entire chorus of Bingo Was His Name-O!
#nonverbal
#epilepsy
#IntellectualDisability
#syngap1
#Autism
@cureSYNGAP1
❤️
1
1
17
Saylor working on her crafting skills at school! 🧬💪
@cureSYNGAP1
#Syngap1
#RareDisease
#epilepsy
#IntellectualDisability
#Autism
#Neurodivergent
1
1
19
Saylor’s summer camp
@AutismSocietyNC
had the cutest talent show! Hers was showing how she knows her shapes! 💜
#autism
#id
#RareDisease
#neurotwitter
#epilepsy
@cureSYNGAP1
3
5
18
A
#SyngapSeizure
looks a little different. It can be a flutter of the eyes.
@cureSYNGAP1
#seizure
#syngap
#epilepsy
1
5
19
Yesterday was a great day! We FINALLY were able to meet TWO
#Syngap1
families IN PERSON! What an awesome experience for all of us! So very thankful!
@cureSYNGAP1
@sandysmith317
@WorthKali
#RareDisease
#NeuroTwitter
#autism
#EpilepsyAwareness
1
2
17
Saylor has a rare genetic disorder called
#Syngap1
. We are trying to raise money for research and clinical trials please donate if you can. 100% of the funds go directly to research!
@cureSYNGAP1
1
3
16
Great example of how easily
#seizures
can be missed. Saylor had several eye rolls in this vid.
#EpilepsyAwareness
#autismawareness
#syngap1
#RareDisease
#specialeducation
#sped
#id
#epilepsy
#neuro
@cureSYNGAP1
3
6
16
Yesterday was our annual
#Sprint4Syngap
! Thankful for all the families that participated, researchers who are working hard &
@cureSYNGAP1
! Still time to donate!
0
4
15
So excited for
#ABATherapy
! Every day she squeals with happiness as soon as she sees her car pull up! Thankful for their services! 😍🧠🧬
#Syngap1
#NeuroTwitter
#epilepsy
#autistic
#Autism
#nonverbal
#hypotonia
#RareDisease
@cureSYNGAP1
1
3
15
Saylor hasn’t developed the leg strength to pedal a bike and too heavy for the rear seat. Found this awesome “Shotgun seat”! Now we can ride anywhere we want! Link to seat in thread
@cureSYNGAP1
#syngap1
#RareDisease
#autism
#hypotonia
#id
#globaldelay
#epilepsy
1
4
15
Did you know that most SYNGAPians LOVE the water? They are drawn to it and love to splash for hours!
#syngap1
#syngap
#epilepsy
#autism
#nonverbal
@cureSYNGAP1
0
7
14
Saylor bug is so dang smart! I just modeled “I want eat” on her talker because I was going to go get myself a snack. This is what she immediately wrote back…😂💜🧬
#autism
#RareDisease
#id
#epilepsy
#neurotwitter
#AAC
#nonverbalcommunication
1
0
14
Kids w/Syngap can also have oral aversion which cause neg impacts w/dental health. Saylor has to have all 🦷 procedures under general anesthesia.
#syngap1
#Autism
#epilepsy
#Neurodivergent
#neuroscience
#sensory
@cureSYNGAP1
3
5
13
Go Cole!
#syngap1
#SYNGAP1
can cause low muscle tone and
#gait
issues, but Cole is crushing his
#PT
goals 💪🏻
#hypotonia
#physicaltherapy
3
8
50
0
1
12
@JMGraglia
@cureSYNGAP1
@curestxbp1
@PennMedicine
@ChildrensPhila
@Prosser_Lab
@EAHellerPhD
@IngoHelbig
@JillianLMcKee
@SydneyStel
@charleneson
@NolanJoeylynn
@SarahRuggieroGC
@JulieXXian
@SyngapNetwork
This little one is excited and thankful as well! 💜🧬
#syngap1
1
0
12
@BrainAblaze
My daughter was dx’d with
#epilepsy
at 3. Also has ID, autism, non-verbal, sleeping issues, & hypotonia. We are thankful our Neuro pushed for several different genetic tests. It gave us our dx of Syngap1. I now volunteer
@cureSYNGAP1
that is going to find a cure! ❤️🧬💪
1
2
11
I want ALL Syngap parents 2 know
@cureSYNGAP1
is here for EVERY 1 of u! If u haven’t gotten to know us yet, pls join our grp. A pos place 2 share experiences, support, learn & so much more. I PROMISE you will not regret it. We are ALL family. 🧬🌎💜🤗
0
2
11
Syngapian adrenaline junkie! Haha!
#SYNGAP1
#epilepsy
#sensoryseeker
#autism
#intellectualdisability
#RareDisease
#neurotwitter
@cureSYNGAP1
1
2
9
Today, on
#RareDiseaseDay
, we honor all affected by conditions like
#Syngap1
. Since Saylor's dx, our journey has been a mix of challenges & blessings. Let's also recognize the unsung heroes—teachers, caretakers, therapists—who play crucial roles in our journey 💜🧬🙏
@cureSYNGAP1
0
2
14
@GiorgiaQuadrato
@MarcellaBirtele
@DossoAshley
Our family appreciates this more than you can ever imagine! Thank you so much for working on
#Syngap1
❤️🧬🧠
1
0
11
Sensory play is important for child development and learning through exploration.
@cureSYNGAP1
#specialeducation
#Neurodiversity
#AutismAwareness
#epilepsy
#IntellectualDisability
#syngap1
0
4
10
Look at this sweet face ☺️
#WarriorWednesday
#SYNGAP1
🧬Jackson (age6⃣) from Canton, Georgia🇺🇸 “He is our little dare devil, he loves to ride rollercoasters, water slides and drive fast cars.” Read & see more photos @
#SRFWW
no.144
#SYNGAP
#
#CareAboutRare
#PatientAdvocacy
#Genetics
0
4
15
0
1
9
So very grateful for each of these organizations & people! ❤️🧬💪
@PatientWorthy
The giants have helped us serve the
#SYNGAP1
community:
1.
@GlobalGenes
is ground zero for learning
2.
@s_searchlight
offers so much
3.
@EveryLifeOrg
is the BEST for advocacy
4.
@curedravet
is our model
5.
@OnceUponAGene
&
@bobigelow
taught
@jmgraglia
how to podcast
#SYNGAP10
1
13
26
0
4
9
1
2
8
@SulserGonzalez
@cureSYNGAP1
@sidb_edinburgh
@biosignals
@sahin_m
Thank you so much for working on this for our children! This is our daughter Saylor 💜😊🙏
0
4
9
@ccfernandez
@Angela_Joc
My 3 year old daughter was just diagnosed with
#syngap
heterozygous nonsense variant, NN_006772.2(SYNGAP1):c.984C>G, p.(TYr328*)
2
0
9
@TheNotoriousEEG
@JMGraglia
@curedravet
@MMeskis
@DrDaniAndrade
@curechd2
@CookChildrens
@LongboardP
@EpyGenix_Therap
@BarabanLab
@McNamarVirginie
@Cure_Cole
@SRFMartaMD
@VickyAArteaga
@phalliburton
@BotheOlga
@MichaelSFoster1
@cureSYNGAP1
We are thankful for your work! 💪🧬🧠
0
0
9
Listen to the latest
#SYNGAP10
episode with
@jmgraglia
!
What is
#SynGAPResearchFund
do to help
#SYNGAP1
families this week?
Subscribe to the
#podcast
at on
#Podbean
2
9
17
0
3
8
1
1
9
There are so many things parents take for granted. This was Saylor’s first Christmas being able to open her own gifts and oh how much fun she had! She took her time and made sure every little piece was off. I couldn’t have asked for anything more ❤️ God’s blessings❤️
@cureSYNGAP1
0
2
8
Thank you sooo much
@PraxisMedicines
&
@Invitae
! We started our seizure tracking yesterday!
@cureSYNGAP1
@ciitizen
@Invitae
As a team built of
#rare
parents, we’re proud to sponsor this initiative. We're grateful to your organization & the
#SYNGAP1
community who are proactively gathering and sharing invaluable insights and using tools like
@Ciitizen
/
@Invitae
to help us move innovation forward quickly.
0
9
14
0
1
9
Most
#SynGapians
are thrill seekers! Saylor loves anything that goes fast, swings high or bounces!
@cureSYNGAP1
#hypotonia
#Autism
#SPD
#epilepsy
#RareDisease
#sensory
0
1
7
Working on her
#FineMotorSkills
. Simple tasks, we take for granted, are a struggle when you have
#Syngap1
@cureSYNGAP1
#id
#IntellectualDisability
#Autism
#AutismAwareness
#RareDisease
#hypotonia
#EpilepsyAwareness
0
3
7
Saylor also had to have a 48hr VEEG. The team
@WCMpeds
was amazing! They took their time putting on each lead & made sure she was comfortable the entire 2 hrs it took.
1
0
7
So very thankful! ❤️🧬
@cureSYNGAP1
It’s
#BrainAwarenessWeek
!
We’re pleased to be collaborating with
@AcadiaPharma
to discover, develop & commercialize RNA-based medicines for the potential treatment of severe & rare genetic neurodevelopmental diseases of the CNS including
#SYNGAP1
&
#RettSyndrome
.
5
16
56
0
2
7
Happy National daughter’s day to these two! They make us better and want to be best! ❤️❤️
0
0
6
Getting better, every day, at staking those blocks!
#finemotorskills
#sped
#autismawareness
#Autism
#EpilepsyAwarenessMonth
#EpilepsyAwareness
#intellectualdisability
#id
#hypotonia
#syngap1
@cureSYNGAP1
0
0
7
@beatasyngap1
Right there with ya! 💪🧬🧠
To do list for today: eat-done, sleep-done, onto
@cureSYNGAP1
. We can do this!
#epilepsy
#ID
#autism
#RareDiseaseDay
#fightforcure
#syngap1
#morningcoffee
#webbinarday
0
4
12
0
3
6
Such exciting news for the
#RareDisease
world! Hope for our
#SynGAP1
community…Hope for my daughter ❤️🧬
#neuroscience
#Autism
#epilepsy
#nonverbal
#IntellectualDisability
#research
@cureSYNGAP1
We are Neumora, a clinical stage biotechnology company pioneering precision medicines for brain diseases through the integration of data science and
#neuroscience
. Read more about our launch here:
2
9
43
0
1
7
A nice write up at
@KSLcom
about our partnership with
@cureSYNGAP1
to try to find a possible therapy for SYNGAP1. Flies to the rescue.
9
20
131
1
0
7
This is wonderful information! Thank you for sharing!
@cureSYNGAP1
0
0
7
Hey
@elonmusk
@Tesla
! Our kids could really use your help! We are racing a
#modelx
to fund a cure for
#Syngap
via
@cureSYNGAP1
! 🧬
@phalliburton
@cureSYNGAP1
A
#ModelX
racing across America to fund a cure for
#Syngap1
via
@cureSYNGAP1
🧬🧠! love it we should get some sponsors for this!
@elonmusk
@Tesla
0
0
2
0
4
7
Next gen tech funding next gen science! 💻+🧬=💥Thank you so much
@sunblocks_nft
for helping to cure
#syngap1
❤️
@cureSYNGAP1
#NFTs
#RareDisease
#IntellectualDisability
#EpilepsyAwareness
#autism
Launching the
#SunGapInitiative
by the
#SunBlocks
#NFTCommunity
. Inspired by
@calebp_eth
: 1110
#sunset
/
#sunrise
by 1110
#nftcollectors
:
1/ RT + Send a sunset/sunrise photo taken or drawn
2/ Leave your signature
Benefit = FreeMint + Charity
@cureSYNGAP1
412
298
261
0
2
6
@ccfernandez
@Angela_Joc
@jmgraglia
Had a zoom meeting with him tonight and have listened to all the podcasts. 👍 He is a great guy! Very thankful!
1
0
6
Absolutely beyond heartbreaking. Prayers of comfort to the family & friends.
SRF sends condolences to the Apler Family for dear Leon🕯️
0
12
30
0
2
6
Exciting day today in Syngap world!
SRF announces $130k collaborative grant to the Tang Lab
@BostonChildrens
&
@Axonis_US
to see if a
#KCC2
enhancing drug will ameliorate
#SYNGAP1
.
Also quoted:
@SVH_neuro
,
@KadamLab
&
@JMGraglia
.
This is possible due to the generosity of our families.
11
17
41
0
1
6
🧬Attention clinicians, researchers, families, & anyone else who is interested! Please join us for this exciting conference in Nashville this December! 🧬
#syngap1
#RareDisease
#Genetics
#Neurology
#epilepsy
#neuroscience
#Psychiatry
#Autism
#idd
0
5
20
1
2
6
My sweet Saylor!
#WarriorWednesday
#SYNGAP1
Saylor (age 4️⃣) from North Carolina, USA 🇺🇸.“She loves riding fast in the boat and on the golf cart, swinging as high as she can…”
Read & see more photos @
#SRFWW
no.129
@EpilepsyNC
#SYNGAP1
#PatientAdvocacy
#Neurology
#epilepsy
0
9
29
0
2
6
It was a great day bringing awareness of
#Syngap1
on
#RareDiseaseDay
!
.
@CoreyBaysden
- our leader for community engagement - shares her family’s
#SYNGAP1
story! Every bit of awareness helps. Thanks to
@wnct9
for the coverage of this work. Our children with SynGAP & their families are incredible.
#epilepsy
#autism
1
7
10
0
0
5
We are so very fortunate to be lead by amazing people! Thank you!
Today only our founders
@JMGraglia
&
@SYNGAP1mom
are matching all donations up to $10k. Join them in supporting
@cureSYNGAP1
's work to fight
#SYNGAP1
via science. 100% of donation direct to the labs.
Every donation matters.
Like. Retweet. Donate.
1
13
22
1
0
6
Such wonderful things CAN and WILL happen when we work together!
@cureSYNGAP1
@rarebasepbc
#syngap1
#epilepsy
#Autism
#RareDiseases
.
@Rarebasepbc
launches FUNCTION 🧠 💊🔬
#neuroscience
#drugdiscovery
w/ 1️⃣5️⃣
#raredisease
orgs
@cureSYNGAP1
is proud to be an anchor ⚓️ partner alongside outstanding groups like
@Foxg1Research
@curestxbp1
@ADNPkids
@CMTNeuropathy
&
#Hope4Harper
!
#SYNGAP1
3
22
65
0
0
5
So great to hear from Suzanne 💜 Thankful to have her part of our team!
ICYMI -
#SYNGAP1Stories
Episode 14 with SRF BOD Chair Suzanne Jones, featuring Jansen. Have you heard it? Have you subscribed?
0
1
6
0
0
6
@deannasyngapf
@cureSYNGAP1
@SYNGAP1mom
Saylor, the little on on the left, is our
#Syngap1
warrior ❤️ 💪
0
0
6
0
1
6
@LorrieForseth
@Duke_Childrens
@DukeUniversity1
@cureSYNGAP1
Thank you! We sure did and we received a copy of the data to share with researchers!
2
0
4
This is amazing! 💜🧬
Huge thanks to
@SanJoseStateFB
for inviting Tony and his brother John to practice today & the game tomorrow!
Tony has
#epilepsy
b/c of
#SYNGAP1
& w/o the Hundley Foundation he would never have had this chance.
#AllSpartans
@bretthundley7
@cureSYNGAP1
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So excited for this to begin! I will be tuned in all weekend!
@cureSYNGAP1
#UFDCure
Huge thanks to
@thepodhotel
for hooking us up with a room so we’re well rested before the Cannonball today.
Pod 39 was fantastic.
Now let’s go
@cureSYNGAP1
!!
#UFDCure
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Saylor had her first field trip today. While I wasn’t able to attend (covid restrictions) the sweet teachers were sure to send a ton of pics. I can’t say enough good things about
@CarteretPreK
. The entire staff are truly a blessing. ❤️
#syngap1
#sped
#EpilepsyAwareness
#Autism
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@StokeTx
@AmEpilepsySoc
We love
@JMGraglia
! Thank you
@stokeTx
for all of your hard work for us
@cureSYNGAP1
& other genetic epilepises💜🧬
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@cureSYNGAP1
@PraxisMedicines
There are no words to truly describe how thankful we all are! We appreciate it more than you can imagine!
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3 crazy, rare disease, dads are live streaming
#UFDCure
across country to cure
#Syngap1
! Check out their crazy antics! Live NOW!
@cureSYNGAP1
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@TheNotoriousEEG
@CookChildrens
@cureSYNGAP1
Thank you soooo much! We appreciate it more than you will ever know ❤️🎉
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While we were admitted
@WCMpeds
brought her toys to play with, water color paints & sent a music therapist to keep her spirits up! 🥰🎶
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Such exciting news! 🧠🧬❤️
SRF announces $100,000
#Exosome
Grant to Professor Janos Zempleni of the
@UNLincoln
@UNLresearch
"The delivery of SYNGAP1 mRNA to the brains of
#SYNGAP1
patients is a feasible application."
Read the press release and sign up for the webinar!
#syngap
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@JMGraglia
@jmcoller
@TevardB
@cureSYNGAP1
@Rettsyndrome
@CureSHANK
@curechd2
@PTENResearch
Thank you for working so hard!
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So thankful for everyone involved in this venture! 💜💪🧬
Fabulous visit to Philadelphia!
@cureSYNGAP1
&
@curestxbp1
met with the ENDD teams at
@PennMedicine
&
@ChildrensPhila
.
ENDD Program is the end of excuses re treating
#SYNGAP1
&
#STXBP1
. The incredible souls in these photos can do this.
We are excited to partner with ENDD.
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@sunblocks_nft
@calebp_eth
@cureSYNGAP1
-By Corey Baysden
#BeaufortNC
0xe141960a8DC82f2A53e8928e1E8B43838e5d91Bf
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Here’s your answer to yesterday’s poll!
The answer was
#CONSTIPATION
💩 The most overlooked symptom of
#SYNGAP1
, maybe ? 🤷🏼♀️
But seriously, we see it again and again, remember to keep these patients regular, when they get blocked or backed up EVERYTHING gets worse.
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