Cystic Fibrosis Drugs Available on NHS

Drugs will 'transform lives"
 

October 24th saw the long-awaited news that the drugs Orkambi and Symkevi would be available on the NHS for the first time for people in England with the debilitating condition. Then on the 29th of October, the department for health in Northern Ireland also announced their intention to complete a deal with the drug company, Vertex Pharmaceuticals.

The cost of the drugs was proven prohibitively high, creating a desperate situation for people with the condition; there were drugs available that could improve their condition and even be life-saving, but also knowing they were out of reach. 

Scotland was first to reach an agreement with the drug company, however, the campaign continues with Wales still needing an agreement for all British people to have access. 

13-year-old Isabelle Finn's reaction to hearing the news the drug will now be available for her, says it all. Isablelle reacts in delight to news a drug for cystic fibrosis is now available on the NHS


Click the image or here to see Isabelle react to the news

 

Read more from the Cystic Fibrosis Trust

Strictly Come Dancing

Stars praised for using Makaton SignsStrictly dancers say thank you using Makaton Signs


Strictly Come Dancing’s stars have been celebrated by sign language charities for using Makaton to communicate with hard of hearing or non-verbal viewers.

Chris Ramsey, Saffron Barker, Emma Barton, and Michelle Visage have all taken to signing ‘thank you’ to those watching at home every week when they are confirmed safe from the dance-off.

Read the full article here

Zero to Hero

Uplifting, Empowering New Young Adult Book Raises Vital Awareness for Child Brain Injury Trust


Sarah Mackie’s ‘Zero to Hero’ takes young readers into the lives of Riley and Nathan Summers; teenage siblings who have been uprooted after their brother Josh’s Zero to Hero Book Cover Imagedevastating car accident and subsequent brain injury. Both must navigate this new change to their family’s rhythm alongside the other pains and pressures of teenagerhood – leaving readers with a new perspective on everyone’s collective struggles.

The volume was commissioned by the Child Brain Injury Trust, and Mackie spoke to dozens of parents, siblings, and children whose lives had been affected by brain injury. 
 

Read more here

7-year-old João Vicente enjoys skateboarding with his bespoke frame!
Watch and smile!

Charlene Hughes - Boyes TurnerBoyes Turnet Company Logo

What is a Deputy?


In my article last month I spoke about the Court of Protection.
As a brief recap, the Court of Protection is a specialist Court that makes decisions on financial or welfare matters for people who lack the mental capacity to make their own decisions.  If the Court decides the person lacks capacity then they can appoint a Deputy.
 

Read the full article here

The Challenges of being Disabled and Green

Sam Little and ZiggySam with her dog Ziggy


Sam Little, a disabled green enthusiast from Aberdeenshire, shares how she builds eco-friendliness into her life even though it is often a less accessible option.

I have low vision and a hearing impairment and I'm passionate about doing my bit for the environment. It's true that change needs to happen on a massive scale, and that being green as a disabled person can be harder to accomplish, but I believe that every little helps and I try to lead by example.

I have tips to pass on. Here are some of the things I incorporate into my everyday life, and some of the hurdles I face when trying to be a disabled eco-warrior.ext 

Read Sam's Tips Here

Ticketmaster makes 'huge steps forward'

Improved booking experience for disabled music fansdisabled man enjoying music event lifted by crowd in wheelchair


Disabled music fans have frequently voiced their disappointment via social media at the booking process for music events. Usually, there are two routes to securing a ticket and booking a seat; a simple, quick, online process and then an often disjointed, long-winded and awkward route for disabled people, usually involving a designated phone line which is not accessible to everyone. 

Ticketmaster has created an online scheme allowing fans to create a profile detailing their needs so, in theory, all future events can be easily booked. 

As the article concludes, it's a great start, but it is only a start. And it's not only music events which need to streamline bookings for disabled people, but restaurants, cinemas, trains... 

Read the full article here

Raver Tots! Raver Tots Banner

Inclusive Family Raves 
 

We heard about Raver Tots through one of the families we work with - it's a favourite activity for their son! This event sounds like a lot of fun for children of all abilities - and their parents!

Raver Tots is the UK’s biggest family rave and festival brand where kids and grownups can hit the dance floor and rave together! There are never-ending moments to engage kids and parents and above all, huge dance spaces where you can hear the UK’s biggest DJ’s playing the best in all forms of dance music. Some events attract up to 5000 people a time!

Founded by Mike Pickets in 2017, Raver Tots has an ongoing charitable interest and supports an array of charities that help children with Autism and ADHD.

www.ravertots.co.uk/events

twitter.com/ravertots

Something to share in Snap News? 

We'd love to hear from you! 

If you have a favourite video clip, app, website, book, local SEN provision, inclusive activity, new technology or equipment.. why not send us the details so we can share in Snap News! 

Send your nuggets to jackie@snapcare.co.uk or call Jackie on 020 7729 2200 
 


Snap Care: The specialist recruitment agency placing high calibre professionals to support babies, children, teenagers and adults with disabilities & additional needs.
Est. 2001. Snap Care is part of Snap Childcare Ltd. 

 
 
 
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