Visit our website to find out about opportunities to take part in our wide range of #fragilex research

Following on from yesterday's success at the Royal Infirmary Edinburgh, it's the Western General today! Awareness raising in general health services is so important #ScotLDWeek24

📣Congratulations to Dr. Lindsay Mizen (L Mizen) who joined families and friends of people with SYNGAP1 Syndrome and did the Anfield Abseil to raise money and awareness of this rare condition. Patrick Wild Centre

sidb.org.uk/news-events/ab…

“On what felt like the warmest and brightest day of the year so far, a number of Patrick Wild Centre and SIDB researchers and clinicians joined the latest Fragile X Society UK Family Day.”
👉 sidb.org.uk/news-events/fr…

Thank you for organising carid_pwc and Fragile X Society, UK!

Edinburgh Medical School

app.onlinesurveys.jisc.ac.uk/s/edinburgh/ge…

If you are a parent / caregiver for someone with fragile X syndrome then please fill in this survey to give your thoughts about the possibility of future genetic therapies. Positive, negative or neutral - its important that all views are heard.

Thanks to all those who abseiled down Anfield today to raise funds for #syngap1 research, including our very own L Mizen pictured here!

Good luck Lindsay and to everyone else doing the #syngap1 abseil tomorrow

‘If a community values its children, it must cherish their parents.’ Wise words from Bowlby during OT and author Tanya van Dalen’s talk on sensory parenting at our joint Fragile X Society, UK family conference today.

Wonderful to see so many people at our Edinburgh family conference co-organised with Fragile X Society, UK. Some great talks today!

There’s still time to donate before I abseil off Anfield Stadium on Sunday to raise money for Patrick Wild Centre, for the study of SYNGAP1, a genetic disorder that my granddaughter suffers from.

Please donate what you can here 👇🏻
gofundme.com/f/syngap1resea…

Opportunity to shape future research in genetic syndromes including #fragilexsyndrome
10-minute survey. 👇

Delighted to produce these alongside Kirsten Johnson, FRSA Gaia Scerif Kayla Smith jonathan herring Hayley Crawford and Angus Clarke The All Wales Medical Genomics Service. Guidelines help professionals and empower those affected by fragile X and their families. Fragile X Society, UK Fragile X International (FraXI)

doi.org/10.1111/jar.13…

CHANGES study of behaviour in SYNGAP1 goes on tour!
Book now - dates available in York, Manchester, Luton and Bristol
patrickwildcentre.com/news/book-date…

Our first Winefride and Booth Smith lecture, celebrating our new PhD studentships. Peter Kind will discuss some of the latest research in understanding genetic conditions associated with intellectual disabilities. Register here:
eventbrite.co.uk/e/winefride-an…

Fantastic photos!! Thank you all so much for all the hard work that has gone into the Lighting Up!! We are incredibly grateful for your support of the Charity. It is very much appreciated.

😍Beautiful updated #SYNGAP1 poster shared by Jillian McKee at Child Neurology Society #CNSAM . This is so valuable for families explaining #SynGAP to clinicians.

‼️Note: #Autism & behaviors vs #Rett and #Angelman in fig 2⃣. #Seizures vs #SCN2A & #STXBP1 in fig 3⃣. Meds in Fig 4⃣.

Sydni Weissgold presenting her PhD plans to families at the UK #SYNGAP1 family meet-up. Longitudinal naturalistic studies will be so valuable in understanding behavior and developing better therapies.

Delighted to be hosting the UK #SYNGAP1 family meet up today.

Congratulations, Peter - this is great news!
To find out more about Peter’s work or SIDB, visit:
sidb.org.uk/news-events/pe…

Great to be at this yesterday. Wonderful involvement of the #fragilex community in the service development process. Heartily supported from all of us in Edinburgh Patrick Wild Centre