Top Tweets for #USHFAM
Back in the North West met with another family faced with an #UsherSyndrome diagnosis. Welcome to our community, you’ll find care and support as you grow strength, never feel isolated #UshFam @MollyWattTalks
Today is #UsherSyndromeAwarenessDay. We are grateful for our #USHFam which allows us to feel connected across the globe in raising awareness of Usher and shining light every day of the year.
The @UsherCoalition’s #USH2022 Connections Conference begins today! Attendees will discover valuable resources and learn the latest on developing treatments from leading #Ushersyndrome researchers. Are you attending? https://t.co/UxAUv2sB6m #USHFam
Met up with a mum who has a 1 year old with usher syndrome who has been dually implanted.
Today she told me with his cochlea implants he waved and said ‘hello!’
My heart is so warm. Technology is amazing.
@mollywatttrust
Can’t quite believe I am writing this!
Over 15yrs since my Ush diagnosis.
The unknown, no treatments, little information & yrs of daily challenges. I will be the very 1st 2b injected in UK, the Sirius trial phase 3.
Thanks to Prof Moosajee & her team, hope at last #UshFam
@Moorfields #Usher Team: Tina Reetun, study co-ordinator, myself, Dr Paulina Ocieczek & Dr Daniel Jackson are getting ready for one of the biggest moments in our careers- the 1st patient @MollyWattTalks begins the @ProQR #USH2A clinical trial today 🎉🤞🏼@MoorfieldsBRC @RetinaUK
This is such a big day for Molly, for the #UsherSyndrome community. Tests being going on for months, it isn’t even me yet I feel anxious, excited and in a way only a parent can feel slightly fearful but Molly is calm, taking it in her stride, please let this be hope #UshFam 🤞🏼
Didn’t think the day would come that there’d be a trial for Ush2a let alone that @MollyWattTalks would be the 1st in UK to have it. Hoping a chance of sight 4 longer maybe a little more sight @Moorfields @MariyaMoosajee @ProQR #Sirius #Phase3 #UsherSyndrome #Type2a thankyou
We had the pleasure of meeting & offering our support to a delightful local family dealing with early #UsherSyndrome diagnosis, this is why we do what we do. Welcome to our #UshFam
Today @MollyWattTalks will be meeting a local family with a baby newly diagnosed with #UsherSyndrome to offer our support - at such a difficult time it’s vital people do not feel alone #UshFam #InItTogether
USH2022 REGISTRATION IS OPEN! Join us for the Usher Syndrome Coalition's 14th annual USH Connections Conference. Register by March 31st for in-person early bird pricing. #UsherSyndrome #USHFam
https://t.co/JjZQYbqa6Q
Thank you #USHTrust registry members who attended yesterday's webinar to learn more about the exciting #USH2A clinical trial studies from @proqrtherapeutics. #UsherSyndrome #USHFam
Happy #UshDay to all who support us, all who raise awareness of #UsherSyndrome to the whole Usher community #UshFam to the scientists seeking a cure we take today to thank you all 👀 👂 🦯🦮
So proud of your work @MollyWattTalks and for inspiring so many by doing what you do. Our community will benefit #UshDay #UshFam
Hear from our inspiring Patient Committee member @MollyWattTalks on the subject of #accessibility, which she says, is “anything, but black and white”
https://t.co/0HnwAAKE5P
#UshDay #UshFamily #UsherSyndrome
@mollywatttrust @PolariChat @sensecharity @DeafblindUK @dbscotland @UsherCoalition Thanks for building awareness @mollywatttrust #USHFam
@Reb_Alexander @MollyWattTalks two #UshAdvocates the #UsherSyndrome community is stronger together #UshDay #UshFam
Wasn’t to be @MollyWattTalks night tonight, fab winner in her catergory. That said 2 ladies with #UsherSyndrome reached the last eight, an amazing achievement in putting this cruel condition on the map @ndawards #UshDay #UshFam
@MollyWattTalks good luck tonight, enjoy the experience and please share with the #UsherSyndrome community #UshFam #UshDay @ndawards
I’m still blown away that parents of newly diagnosed kids google #UsherSyndrome find me & reach out for help - thank you social media from bringing this community together, always here to support #UshFam #Deafblind #InItTogether Molly
Fantastic news, we love people doing their bit for #UsherSyndrome awareness. Well done Alice & @bbcsoutheast Alice you’re a star #UshFam
Amazing day working with @bbcsoutheast getting her Ushers story out there land also promoting @mollywatttrust and @LOOK_UK ❤️ watch this space for the finished piece ❤️
@Thehotwatt @MollyWattTalks Molly is amazing and it's so true she has given courage strength and ambition to my Alice Im unsure where we would be right now with her support and of course Jane her mum xx #mollyrocks #ushfam #usherkids ❤️
In a time where social media is blamed for such evil we are very grateful it has brought together so many people living with #ushersyndrome #RP #mentalhealth other #disabilities - sharing daily challenge, experiences & possible solutions is often a lifeline #InItTogether #UshFam
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