I’m trying to raise awareness of a rare genetic disorder #LambShafferSyndrome and its planned awareness day on the 12th June.
I am just wanting to #raiseawareness So hoping for a retweet or 2 as there is very little out there/known about it.
I’m trying to raise awareness of a rare genetic disorder #LambShafferSyndrome and its planned awareness day on the 12th June.
I am just wanting to #raiseawareness So hoping for a retweet or 2 as there is very little out there/known about it.
To raise awareness and for a bit of fun, can I request you post a “silent scream” photo (a mouth wide open but no sound) on any of your social media platforms with a tagline “SilentlyScreamingForLSS” to give a voice to those who struggle to speak.
Today is Lamb-Shaffer awareness day, Lamb-Shaffer Syndrome is rare genetic disorder caused as a result of a mutation or deletion of the SOX5 gene 🧬 on chromosome 12, resulting in developmental and speech delays as well as having cognitive impacts.
In December 2024, my daughter Charlotte was diagnosed with Lamb-Shaffer Syndrome (LSS), sources suggest there are approximately 600 diagnosed cases worldwide, so it isn’t well documented.
I’m trying to raise awareness of a rare genetic disorder #LambShafferSyndrome and its planned awareness day on the 12th June.
I am just wanting to #raiseawareness So hoping for a retweet or 2 as there is very little out there/known about it.
Charlotte, like others with this condition suffers with various symptoms such as…
speech delay,
behaviour issues,
low muscle tone,
gross and fine motor delay’s,
vision issues,
anxiety,
seizures
and a smile and a laugh that could light up a room.
#raisingarare#lambshaffer
As of 2024 it is suspected that there are only about 600 diagnosed individuals across the world with Lamb-Shaffer Syndrome, but there will be more.
We are currently unaware of any other families in the UK with the condition, hopefully this might help.
Charlotte, like others with this condition suffers with various symptoms such as…
speech delay,
behaviour issues,
low muscle tone,
gross and fine motor delay’s,
vision issues,
anxiety,
seizures
a smile and a laugh that could light up a room…
June is Lamb-Shaffer Syndrome Awareness Month!
🧬 Our free, expert-written guide to Lamb-Shaffer syndrome is available on our website at https://t.co/AyeNdvNyzV
🙌 Help us raise awareness by sharing this post.
#LambShafferAwarenessMonth#LambShafferSyndrome#LambShaffer
Today is World Blood Cancer Day, but across the globe, awareness of blood cancer remains shockingly low.
Help us #SayBloodCancer by sharing this video with your family and friends. Thank you. ❤️