Simon Sewart

Dad to 2 boys, 1 with #battendisease whose health declined whilst denied #brineura in the UK for 9 months.

[Edinburgh Castle @edinburghcastle]

We're lighting up the castle in orange tonight for International #BattenDisease Awareness Day. 🧡

#BattenDay2024
#BattenAwareness
#BDFA

[Jacob Rees-Mogg @Jacob_Rees_Mogg]

Awareness of Batten Disease is crucial because, as the disease is so rare, it can take a significant amount of time for children to be diagnosed.  Please share to raise awareness. #BattenDay2024 #BattenDiseaseAwareness #BDFA

[Jacob Rees-Mogg @Jacob_Rees_Mogg]

Today is Batten Disease Awareness Day.  Batten Disease is a rare, neurodegenerative disease that typically begins in childhood.
Long-term followers will remember my constituent Max, who has the disease. I am delighted to report that he is continuing to do very well, thanks to the Brineura treatment.  The photo shows Max, now 13, on a "sailability" boat ride around the Bristol docks this week. #BattenDay2024

[Simon Sewart @simonsewart]

@Jacob_Rees_Mogg Thank you for your amazing support for Max and the batten disease community over the past few years.

[Simon Sewart @simonsewart]

Here's Marvellous Max and some of his amazing team, wearing orange to help raise awareness of devastating Batten Disease. There's no cure & only 1 effective treatment for a small section of children
#battenday2023
#showusyourorange
@BattenDiseaseuk

[Gloucestershire Cricket @Gloscricket]

Gloucestershire players Chris Dent, James Bracey and Tom Lace had a brilliant time meeting the lovely families at @CHSW for Sibling Day today!

We hope everyone at Children’s Hospice South West had a great time learning cricket skills and playing fun games!

#GoGlos 💛🖤

[Simon Sewart @simonsewart]

Max doing some more to raise awareness today of batten disease with his brother Felix and his friends William and Freya at his Bristol @ConductiveE session today. There's no cure & only 1 effective treatment for a small section of children #battenday2022
@BattenDiseaseuk

[Simon Sewart @simonsewart]

Here's our amazing son, 11 year old Max, helping to raise awareness of devastating batten disease at Great Ormond Street yesterday. Today is batten disease awareness day. There's no cure & only 1 effective treatment for a small section of children #battenday2022 @BattenDiseaseuk

[Simon Sewart @simonsewart]

Batten disease is a devastating childhood disease for which there is no cure and only an effective treatment for a very small subset of children, like my beautiful son Max. Please remember these children, whether still here or gone, and pray for a cure soon #BattenDay2021

[Simon Sewart @simonsewart]

Would you or someone you know like a job helping 9 year old Max?

Max is looking for a 2nd 1:1 teaching assistant to help him at school in Somerset near Bristol/Bath. There wouldn't be a dull moment with Max that's for sure!

Please help spread the word!

https://t.co/vAYpKfWYQ3

[Bob Moran @bobscartoons]

Let it be remembered that as British democracy ate itself, Charles Walker shone out like a beacon of decency and an echo of our former greatness.

https://t.co/guBbqVoBog

[Dr Clare Craig @ClareCraigPath]

Great interview. Why zero COVID is not achievable and is a guarantee of totalitarianism.

[Simon Sewart @simonsewart]

@NeilClark66 @lc5190 Perhaps they could show this chart to the people in their homes and explain that it shows how effective the vaccine is? I do believe that people right now could be shown an apple, be told it's an orange, and be convinced it's an orange.

[Peter Daou @peterdaou]

BIDEN SHOULD HAVE BEEN DISQUALIFIED

The Lincoln Project's cofounder, John Weaver, is rightfully being condemned for sexual harassment of 21 men.

Meanwhile, Biden is POTUS despite multiple accusations of inappropriate behavior and years of groping girls.

[Simon Sewart @simonsewart]

Conductive Education Bristol is an amazing tiny charity that support children like Max, who has #battendisease, with gross & fine motor support, giving self-esteem & confidence. More than ever, these tiny charities need our support. Please do take a look https://t.co/Piheu9tbVK.

[Dr. Sally Priester @priesterspr]

Today at Vienna, Police is with the Protesters walking with their helmets in hand showing Solidarity. Awakening at Vienna*

[Bob Moran @bobscartoons]

Lockdowns do two things:

1. Slightly delay a relatively small number of inevitable deaths.

2. Directly cause a massive number of entirely avoidable deaths, widespread misery & economic devastation.

This will soon be proven beyond any doubt.

We must never do it again.

[Peter Hitchens @ClarkeMicah]

The way ‘Covid deaths’ are being counted is a national scandal. We have no idea how many lives have really been lost to the disease' . Distinguished Pathologist Dr John Lee in May: https://t.co/ls7LBFVBot via @spectator

[Simon Sewart @simonsewart]

@NigelKellow When you consider the governments response in the context of the 4th industrial revolution it all makes sense. It’s rolling out rapidly and it’s brutal.

https://t.co/GZuWt1uIVY

[Adam Afriyie @AdamAfriyie]

The point of vaccination is to protect lives & allow people to live their lives.

There’s no point to vaccinating if our country remains unable to open its schools & businesses, nor keep its people in work & free to socialise with family & friends.

#Road2Recovery
#vaccination