Matt's mum

Matty has #TSC learning difficulties, #epilepsy & kidney growths. Brain surgery for Sega Tumor. I'm proud to be his Mum. #RareDiseaseDay #braintumourawareness

[Matt's mum @MattywithTSC]

Thank you very much @UKTSA for being there with us last night and supporting @TurkeyTSCrew x https://t.co/YSIzucuJGv

[Tuberous Sclerosis Association @UKTSA]

Wow! What a night! And over £2,000 raised already by @TurkeyTSCrew thanks to his amazing #ultrawhitecollarboxing yesterday evening. And still time to make a donation https://t.co/9tWmm3AXNO Huge thanks too to #MattGodfrey mum Yolanda @MattywithTSC & dad Steve #TeamTSA

[Tuberous Sclerosis Association @UKTSA]

Thank you to everyone who shared TSC messages far and wide on Rare Disease Day yesterday - including Jane, who took part in a @rarediseaseuk Instagram takeover, flying the TSA flag and raising awareness of TSC! Excellent stuff!

[Terence Leung @TerenceLeungSF]

Strong!!
Be persistent

@ShiCooks @morgfair @mvollmer1 @terence_mills @antgrasso @Ronald_vanLoon @ChuckDBrooks @EvanKirstel @MikeQuindazzi @Hana_ElSayyed @YuHelenYu @Paula_Piccard @FrRonconi @CelineDarnet_ @MargaretSiegien @rwang0 @Nicochan33
MT @alvinfoo
https://t.co/ceRi9SniGI

[Scot Gov Health @scotgovhealth]

Convalescent Plasma transfusions have been shown to reduce #coronavirus deaths by up to 50%.

If you’ve had coronavirus but have had no symptoms for 28 days and are now well please get in touch!

☎️0345 90 90 999
💻https://t.co/tYskiuZvqX

[Tuberous Sclerosis Association @UKTSA]

An ONS survey is highlighting the additional burden that covid-19 is having on those who live with a disability, with findings including that almost half of people living with a disability have had their mental health suffer as a result of the pandemic: https://t.co/fvWOsVyvyp

[Matt's mum @MattywithTSC]

@michelle111116 So sorry to hear this, sending love and strength and hoping Ruby improves soon. Such a roller coaster of worry for you 🤗 💓 xx

[Matt's mum @MattywithTSC]

@Maggiew56700896 Ours are still green -there’s hope now seeing yours 🙂

[Tuberous Sclerosis Association @UKTSA]

We received an amazing response for our 'Face mask exempt' badges, helping those in the TSC community who can't wear face coverings feel more comfortable when out and about. The badges are temporarily SOLD OUT.

We're working to get more ASAP and will tell you when they're here!

[Jack Young 💜 @jack_young34]

Brilliant checklist for supporting someone with a Learning Disability in hospital.

👉👉 https://t.co/2mdiVSm7kG

Take time today to:
✅ Introduce yourself to your Hospitals LD liaison team (phone or email)

✅ Request and complete the hospitals LD passport

[Tuberous Sclerosis Association @UKTSA]

Has your family's wellbeing changed as a result of covid-19? The CoIN study is aiming to understand the specific challenges facing families of children with rare disorders, and how these relate to mental health and wellbeing.

Take part by visiting https://t.co/XGjVbQBGn0

[Matt's mum @MattywithTSC]

@michelle111116 Absolutely lovely news, well done Ruby. Xx

[michelle clements @michelle111116]

Today was a massive achievement 🙌 after so long of Ruby, looking out of the window. She finally made it out too the garden, which she’s never been in before and too feel the elements on her face, she loved it 😍 Thankyou for all your love and support for Ruby 🙏🏻❤️✝️

[Tuberous Sclerosis Association @UKTSA]

The temperatures are hitting the mid-30s over the next few days, but at TSA HQ we need your help to choose our 2020 Christmas card design! Will we go traditional this year, or will the look be more modern? Make your choice by voting here!: https://t.co/XiU4UKyOo4

[Tuberous Sclerosis Association @UKTSA]

Leo Gargett is climbing the equivalent of Mount Everest on his stairs - going up and down over 6,000 times - and has reached the halfway mark! After smashing his fundraising target, Leo told us that he is "So thankful to each donation." Keep going Leo!

https://t.co/r4haPE2ZOK

[Tuberous Sclerosis Association @UKTSA]

The TSA are delighted to learn that Epidiolex® (cannabidiol) has been approved in the US for TSC-associated epilepsy. Our work continues, as we monitor the possibility of GW Pharmaceuticals applying next for a European license.

https://t.co/7lsP5PlQtj

[Tuberous Sclerosis Association @UKTSA]

With shielding paused for many in the UK it's understandable to feel anxious or to have questions about TSC, everyday life and covid-19. The TSA Support Line is here for you, wherever you live in the UK: freephone 0808 801 0700 or email [email protected].

[Kari Luther Rosbeck @KariRosbeck]

So thrilled there’s now a second FDA-approved treatment for TSC! Huge thanks to those who participated in clinical trials and to @GreenwichBio for your compassionate commitment to make this possible.@tsalliance

[Carole Hagan🖤🇪🇺💙 @carole_hagan]

@KariRosbeck @GreenwichBio @tsalliance This is good news and I hope it has real benefits for the TSC community.

[Boris Johnson @BorisJohnson]

Folks, if we all remember to do these three things, then we can keep the virus under control.

Wash your hands, cover your face, and keep your space from those not in your household.

#HandsFaceSpace

[BBC Breakfast @BBCBreakfast]

From today #shielding advice for people in Northern Ireland and England has changed.
But people like Rob, who has a rare from of muscular dystrophy, tell #BBCBreakfast they're nervous about going out.
https://t.co/4S1KKUUAc3

[Matt's mum @MattywithTSC]

Incredible lady BUT there has to some support for her and her son. It does seem the disabled adults within our families have been forgotten. None of Matty’s support services have reopened ? Why ??

[Linda McCafferty @mccafferty2]

Read this and forever weep😥 @guardian