Nancy Leib Kessler

#raresister to Caren age 69 who has #Syngap1, volunteer patient advocate @curesyngap1 🧬🧠 working for a #cure for #rare #epilepsy #autism #ID

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

Need tickets for the 4th annual SRF Gala? Hurry before it's too late! Support this spectacular event and have a great time as you help us raise funds for #SYNGAP1 research!

Tickets: https://t.co/qhNt9QYYKP
Past recaps: https://t.co/Qa3UMLLnpf
#CLG4 #Gala #IlluminatingHope

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

Meet our #Volunteers and Why They Support SRF!

"...SynGAP Research Fund is led by a passionate team who is changing the lives of Syngap patients and their families."

#SYNGAP1 #SupportSRF #SynGAPResearchFund

https://t.co/FO9bWEMvOj

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

Meet our #Volunteers and Why They Support SRF!

"...we are stronger together and...every action, no matter how small, contributes to a brighter future for our children."

#SYNGAP1 #SupportSRF #SynGAPResearchFund

https://t.co/FO9bWEMvOj

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

Good morning from #BIO2024 where we are kicking off the day with inspiration from John Crowley, CEO of @IAmBiotech at the #PatientAdvocacy Breakfast.

#SYNGAP1 @Converse are representing.

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

Listen to the latest #SYNGAP10 episode with @jmgraglia! What is #SynGAPResearchFund doing to help SYNGAP1 families this week? Subscribe to the #podcast at https://t.co/VkRxC2Qur1 #SYNGAP1

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

Has this account helped you stay up to date with #SYNGAP1 and #RareDisease Research? Meet our patients? Be inspired about progress?

Help us get to and past 10,000 followers, RETWEET this and be sure to FOLLOW @cureSYNGAP1

#StrongerTogether 🔟K

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

🎤💻 New SYNGAP1 #SRFWebinar

🧬Therapy & the Clinical Perspective: A Breakdown of the Therapy Model for the SYNGAP1 patient

🗓 Tuesday, June 25th
🕘 5pm PT 🕔 8pm ET
👉https://t.co/CQiwGy9nTL

#SYNGAP1 #SynGAP #SynGAPResearchFund #CareAboutRare #PatientAdvocacy #Neurology #Genetics #Pediatrics #epilepsy #autism #raredisease #therapy #PT #OT #ST

[Peter Halliburton @phalliburton]

When I started volunteering w/ @cureSYNGAP1 after C’s dx in 2019, we were a small startup 501(c)(3). Today, SRF’s grown into a PAG machine! $5.75M raised; we’re making mind-blowing science happen that will correct the underlying genetic cause of SYNGAP1.

https://t.co/k6SXUhJp19

[Mike Graglia 🌻 @JMGraglia]

So well written. Read this one.
#SYNGAP1

[Nancy Leib Kessler @nkessler0110]

We hope to see you at the Gala!💜

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

Have you saved the date yet? For the 4th year, we're shining a light of hope as we honor Caren Leib, age 67, and all those diagnosed with #SYNGAP1. #SaveTheDate #CLG4

Details - https://t.co/qhNt9QYYKP
Past years' videos - https://t.co/Qa3UMLLnpf

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

Having Jaxon's #SYNGAP1 diagnosis "was a sense of relief, we were finally able to put our finger on it!" - Monica Harding, Jaxon's mom

Trailer - https://t.co/7O2trwuo3h
Details - https://t.co/pwENvprES6
Donate - https://t.co/XNhITtFFst

#ConnectionIsEverything

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

We welcome @giorgiaquadrato to our SAB! The Quadrato Lab @USCStemCell focuses on understanding the cellular and molecular basis of human brain development and disease.

https://t.co/cSMrygjkEb

#SYNGAP1

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

Congratulations to Dr. Wiltrout, @IDreamofGenes & @BCH_PoduriLab for this analysis of @ciitizen data collected with & supported by SRF!

Comprehensive phenotypes of patients with #SYNGAP1-related disorder reveals high rates of #epilepsy & #autism

https://t.co/enPmUpxJLQ

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

Join us for a night of inspiration and impact! Together, we're shining a light of hope as we honor Caren Leib, age 67, and all those diagnosed with #SYNGAP1. #SaveTheDate #CLG4

https://t.co/qhNt9QYYKP

[Nancy Leib Kessler @nkessler0110]

@cureSYNGAP1 Jackie, such an amazing advocate and parent. Thank you Jessica Johnson and Jackie Kancir for this podcast #curesyngap1

[Sandy Smith @sandysmith317]

At #rarex2024 today in So Africa, Mama @SydneyStel shares her story on film! #syngap1 #RareDisease #nngwe #rdsa @cureSYNGAP1

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

What are you doing today? Why not create your #SprintForSyngap team? You'll not only help raise money for #SYNGAP1 research, but you might also win an adaptive tricycle from @Rifton!

https://t.co/Pi4YryrAk5

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

Help SynGAP Research Fund make an #Impact toward a cure for #SYNGAP1! Find a way to help even a little bit at https://t.co/rgRsktgzQx and #MakeADifference in our lives! Thank you!

[Nancy Leib Kessler @nkessler0110]

Thank you Ana Mingorance @CNSdrughunter for this excellent summary of the #AES2023 #SyngapResearchFund Science day in Orlando!

[Ana Mingorance @CNSdrughunter]

The day before #AES2023, @cureSYNGAP1 had a focused conference that was great. I wrote my main learnings:
- cool and scary new biology
- now: drug repurposing
- tomorrow: cures
- the challenge of missense, could multiply patient # by 3-fold!
- a real team

https://t.co/CaeVpKTGjx

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

How can we thank you?
~
Dear Families and Supporters of SynGAP Research Fund,

From families and friends to volunteers, supporters and donors, we know our SYNGAP1 community is full of incredible people making an impact on those living with SYNGAP1.

SynGAP Research Fund is there for our families on the hard days.

We laugh.
We cry.
We celebrate.
We advocate, together.

We envision a world where families, clinicians, and advocates enable individuals with SYNGAP1 to thrive.

It is your involvement that is bringing programs to families and driving research for targeted treatments in SYNGAP1, and we are proud of what we have accomplished together!

As you gather around the table with friends, family, and loved ones, know that as always, we remain grateful for you!

Happy Holidays to you and your loved ones.

With Gratitude 💜 Syngap Research Fund - SRF