Joined July 2018
- Tweets 141
- Following 396
- Followers 282
- Likes 255
49 Photos and videos
24 Oct 2023
The 2023 #SATB2-Associated Syndrome Research Grant is accepting proposals through November 1, 2023. To read our full RFP and research priority areas, visit our link below.
satb2gene.org/research/#gran…
#RareResearch #Speech #Behavior #Sleep #Genetics
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11 Jan 2023
Join our partners @rare_ready for an Advocacy Bootcamp where you will learn how to communication with your state legislator and advocacy strategies to help you navigate policy hurdles. The more voices for #SATB2 and #RareDisease, the better. We are stronger together!
11 Jan 2023
Today is International Thank You Day! We want to show our thanks by hosting a virtual event. Join us for ADVOCACY BOOTCAMP on 2/7 at 12:30 ET. Register at: bit.ly/3k38SaP
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31 Oct 2022
Our family assistance program is accepting applications through the end of today! SATB2 families apply today before for up to $1,200 in financial assistance! Learn more: satb2gene.org/resources/fami…
#SATB2 #ShowYourSAS #CareAboutRare
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4 Oct 2022
The 2022 #SATB2 Research Open Call closes THIS Monday, Oct. 10th at 11:59PM ET. Funding for SATB2-Associated Syndrome on important areas such as #speech, #behavior, #sleep, and #globaldelays are among some of the top priorities.
satb2gene.org/research/#gran…
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30 Aug 2022
If you are attending the @GlobalGenes '22 Rare Patient Advocacy Summit and you are a rare disease leader, I suggest you meet with @OdyliaTx. Happy to share our experience with them on a landscape and gap analysis to help us develop a research strategic plan!
24 Aug 2022
Interested in chatting about your #RareDisease #DrugDevelopment efforts at the @GlobalGenes 2022 Rare Patient Advocacy Summit? Follow the link and we'll setup a time to meet tinyurl.com/2p8ufc4y #GGSummit #GGSummit22 #CareAboutRare
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22 Aug 2022
All donations given in August are earmarked for #research. Your previous help has funded stem cells, animal models, neuron studies, bone density studies, metabolic studies, & more. The research matters. satb2gene.org/donate/
#SATB2 #rareresearch
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20 Aug 2022
Did you know that 70% of patients with SATB2-Associated Syndrome have low bone density? #SATB2 impacts bone health and could put our patients at greater risk for breaks and fractures. Doctors encourage families to get a bone density scan at 4 to 5 years old. #Bones #CareAboutRare
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20 Aug 2022
Did you know? That #dental issues are present in all individuals with SATB2-Associated Syndrome?
Key characteristics can include: Severe crowding, Large Front Teeth,Teeth grinding, Delayed root formation, Absence of some adult teeth.
#SATB2 #rareresearch #dentist
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18 Aug 2022
Hey @lukebryan - meet Skylie! She has a rare condition called #satb2 associated syndrome! This year for her 16th bday she’s coming to see you TONIGHT and she wants to meet you! Sky represents one of the 650 with SATB2. Can you make her dream come true?
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SATB2 Gene Foundation retweeted
18 Aug 2022
Hey @lukebryan - meet Skylie! She has a rare condition called #satb2 associated syndrome! This year for her 16th bday she’s coming to see you TONIGHT and she wants to meet you! Sky represents one of the 650 with SATB2. Can you make her dream come true?
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16 Aug 2022
Now accepting applications for the annual SATB2-Associated Syndrome Research Grant Program until October 10th! Seeking applications that will drive momentum for our #rare community and impact the lives of our patients! satb2gene.org/research/#gran…
#SATB2 #RareResearch #Genetics
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16 Aug 2022
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16 Jul 2022
An amazing presentation and knowledge shared with us from @AllisonCottonMD. We look forward to working with Dr. Cotton on more projects!
SATB2 Gene Foundation retweeted
16 Jul 2022
With Yuri Zarate, we developed the satb2-portal.broadinstitute.… sharing the largest curated #SATB2 disorder dataset. Hopefully the analytics & documentation will empower families and enhance clinical use of genomics 🧬. Check it out. Great work by @BruengerTobias, @arthurste
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7 Jul 2022
Want to hear our latest #SATB2 research? Register for the virtual SATB2 conference & hear from clinicians & researchers on important topics from bone health, growth, severity scores, dental, speech, research updates, & more. #research bit.ly/SATB2virtual
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23 Apr 2022
We are honored to be selected as @EinarsonTeam as their charity of choice this year! 💜
21 Apr 2022
We’re so excited to announce we have raised $13,590 for the SATB2 Gene Foundation from the 2022 @CurlingCares Calendar! 🤩🎉
This project was so special to us and we chose to raise funds for the @Satb2Gene as Val’s son Jaxen was diagnosed in June 2020.
20 Apr 2022
Pack your bags for Orlando, FL for our biannual SATB2-associated syndrome Family Conference on July 14 & 15. Join us for the largest gathering of SAS families, clinicians, & researchers for 2 information-filled days. Early Bird Registration ends April 30. satb2gene.org/event/2022-fam…
25 Feb 2022
We are pleased to announce one of the recipients of our 2021 Research Grant program, Dr. Luigi Boccuto of @ClemsonUniv for his project titled "Metabolic approaches to treatment for SATB2-associated syndrome". satb2gene.org/research/#rese… #SATB2 #Research
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