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Part of the team in our fundraiser shirt! The day that we are biking 85 kilometres to raise money for the rare disorder STXBP1 Encephalopathy is almost there! To donate and check for more information, you can visit our fundraiser website: gofund.me/54062fe6

I wrote a children’s book and I think it’s pretty good! Now what?

When Bridget Finn’s daughter was diagnosed with STXPB1, she turned to art for support. Now she's holding a fundraiser with some of the biggest names in contemporary art to fund research for the rare disease. ▶ Hear her story on @detcultureshift: buff.ly/3zXeb18

SO ENERGIZED by sharing all the latest with 60+ stxbp1 researchers in the same room! #stxbp1summit22 #RareDisease

It's a wrap! Amazing weekend in Philadelphia with our #STXBP1 community of families and researchers. Science + Love = CURE. #STXBP1Summit2022

So thrilled that Bridget Finn, amazing #STXBP1 Mom and gallerist is organizing an art auction to fund needed #naturalhistorystudies for STXBP1. stxbp1 #letsdothis #raredisease wdet.org/2022/08/03/gal…. .

As we near Sept and the #lendavoice #beavoice campaign. I want to share Bridget Finn story of her daughter and the steps she has taken to #beavoice. stxbp1

Two $87K grants for #STXBP1 research! LOIs due this Friday 9/16 - don't miss it! RFA link 👇 #raredisease

"There is nothing that will set a researcher's belly on fire than a parent during a research call saying 'Get it done'." - Zachary Grinspan neurologylive.com/view/partnerin… stxbp1 @SLC6A1_Mom SynGAP Research Fund (SRF)

Thrilled to share that in 2022, our fundraiser, FLOURISH raised a total of $1,242,545.00 for The Stxbp1 Disorders Foundation (501c3.) Can't wait to continue the efforts in new ways in 2023! Thank you all for your generous support. youtu.be/uZzsXV8Txqs via YouTube #curestxbp1

#STXBP1 Dad Tony Fatticci is Voyaging Towards a Cure! He's on a winter wilderness trek to raise awareness and funding for #STXBP1 - 17 days & 100 miles with a 180 lb toboggan! #letsdothis stxbp1 wdio.com/front-page/top… give.stxbp1disorders.org/campaign/voyag…

What a privilege to have the team and opportunity to try and help my daughter and those like her live healthier, fuller lives. We will be a relentless force for good against #RareDisease. Ingo Helbig DAVIDSON LAB Children's Hospital Penn Medicine tinyurl.com/yf649bcc

Couldn’t have said it any better on our end. An absolute honor to be part of the team that was granted this generous award! And what a privilege to be working alongside the incredible labs of Ben Prosser & Ingo Helbig.

We are extremely excited to be a part of #ENDD …this will dramatically change our ability to treat #genetic #epilepsies and #NDD Make Data Speak in #RareDiseases #ENGIN stxbp1 SynGAP Research Fund (SRF) Ben Prosser DAVIDSON LAB Children's Hospital Penn Medicine

Love you Lu. Keep going. 🦄

This week, Ingo Helbig presented our case for the need for an #ICD10 code for #STXBP1 to the CDC. We applied for a code in June 2021, so we have been working toward this important meeting for almost 2 years. Many thanks to @SarahRuggieroGC, COMBINEDBrain and TESS Research Foundation

#STXBP1 (as many other rare epilepsies) urgently needs an #ICD10 code ...this is an important step to identify patients early for clinical trials and precision medicine. stxbp1 @SarahRuggieroGC COMBINEDBrain Rare Epilepsy Network

One of the largest group shows of Detroit artists is on display now through May 6 at the Reyes | Finn contemporary art gallery in Corktown. Bridget Finn joined @detcultureshift to talk about “Get Together” + today’s “PASC, Portfolios and Pizza” event 🎨 ow.ly/M3WR50NxAMk

As the mom of a disabled toddler that requires 24/7 attention/care i’d love to hear what is being done on a local level to support families in our position (particularly in Wayne county.) #detroittoday Congresswoman Rashida Tlaib