Myaware Fighting Myasthenia Together

With the school holidays approaching, you may be looking for ideas of fun things to do with children with Myasthenia - see the link for lots of options on information and support.
https://contact.org.uk/help-for-families/information-advice-services/social-care/play-leisure-and-recreation/

Myaware are preparing their own response to the negative guidance issued by NICE with regards to the use of zilucoplan on the NHS. To help, we would appreciate learning more about the experiences of patients who have been treated with IVIg. If you or a family member have been treated with IVIg we would be extremely grateful if the short survey below could be completed.

IVIg Experience Survey Take this survey powered by surveymonkey.com. Create your own surveys for free.

Zilucoplan is a new medicine developed by UCB to treat those living with myasthenia gravis (MG). NICE have issued negative guidance after the first committee meeting. Myaware want to ensure all patients have a voice in this matter, and have developed a guide on how you can publicly comment on this decision. The deadline for comments is Wednesday 24th of July. Make sure you have your say!

Guidance for Posting Public Comments – NICE appraisal for zilucoplan Zilucoplan has received initial negative guidance from NICE ...we have prepared a guide for those who may not have done this before.. read more here.

📢 Be a 'Fabulous Fundraiser' this Friday by nominating myaware!

Myaware is encouraging people to nominate them for a chance to win £1,000 as part of Benefact Group’s Movement for Good Awards, which is giving over £1million away to charities in it's annual programme of giving 🙌

The next £1,000 draw is approaching, so please get your nominations in by midnight Sunday 21st July 2024

It’s quick and easy to nominate us online - just follow the link and use our Registered Charity number : 1046443

https://movementforgood.com/

Winners will be drawn at random and the more times myaware is nominated the more chance it has of being selected.

Please share, share, share with family and friends and encourage them to nominate myaware too🙏

📣 Welcome to the three newest members of the support team; Anna, Heather, and Charlie.

To learn more about these new members of the team please visit our website:
https://www.myaware.org/Pages/FAQs/Category/our-team

This is our next Zoom - Wednesday 17th at 6.30pm - we still have spaces available - if you are aged between 18 and 39 why not sign up https://www.myaware.org/Event/young-generation-drop-in-catch-up

'Fabulous Fundraiser Friday' shout out 📢 today goes to Will who is competing in Loughborough Ultra White Collar Boxing Match on Saturday 13th July 2024 with the intention of raising as much awareness and money as possible for myaware as his dad was hospitalised in 2018 with ocular myasthenia and Will appreciates the support that his dad received from myaware.

Good luck and thank you Will 🙌🙏

Read Will's story here:
https://www.justgiving.com/page/will-blockley-1717169550180

The pharmaceutical company Argenx are working with the medical communications group AKT Health to raise awareness of young women with myasthenia gravis and the impact MG has on their relationships. They are looking to speak to partners and/or daughter/parent duos if possible to learn more. If this is something you would be interested in please get in touch with Tim Cockroft ([email protected]).

Every time you shop with Easyfundraising.org.uk you get an e-stamp. You are then in with a chance of generating a free donation to myaware of either £1,000 or £500.
£577.36 raised so far! There are over 7,000+ brands partnered with Easyfundraising and you could be helping the rest of the myasthenia community each time you do your weekly shop, buy stationary for your business or get your new mobile phone. Sign up here: https://www.easyfundraising.org.uk/causes/myaware/

Thank you so much to everyone who has helped us with our my awareness month campaign. You are all amazing and we couldn't have done it without you 🌟🌟📣📣

Although we are at the end of my awareness month, there are still so many fantastic resources available to support you on our website:

https://www.myaware.org/gp-information

And our GP survey is still live. Three minutes from your GP will help us to shape the future of how best to support and inform UK GPs to feel confident in effectively identifying Myasthenia symptoms and referring patients successfully 🙌

https://www.myaware.org/gp-survey-2024

GP Survey 2024 Help us to help people with myasthenia...take our 3 minute survey..

A new medicine for myasthenia gravis is being appraised by the National Institute for Clinical Excellence (NICE). Rozanolixizumab, developed by UCB, is being considered for use on the NHS and NICE are looking to hear from patients with MG at an online committee meeting on the 14th of August. You do not need to have been treated with rozanolixizumab. If you would like to learn more or get involved, please contact Charlotte Campbell ([email protected]).

'Fabulous Fundraiser Friday' shout out today 📢 is a MASSIVE THANKYOU to everyone who took part in the 'MyMiles' challenge for MAM 2024 during June. The dedication, incredible fundraising and variety of challenges undertaken has been inspirational.

The collective fundraising total to date (with donations still coming in) is an incredible £8,116 🙌😊 (https://www.justgiving.com/campaign/mymiles)

The success has been way beyond our expectations and we really can't thank everyone enough for this amazing result 🙏

Shall we do it all again next year?!😅

If anyone has any photos that they are happy for us to publish in an upcoming newsletter, along with a few words about what inspired you to take part in the 'MyMiles' challenge then please do email us at : [email protected]

🙌 We are pleased to let you know that we’re one of the 58 organisations that have signed up to Vision with National Voices.

📰 To read more about this exciting collaboration and what it’s all about, follow this link: https://www.nationalvoices.org.uk/project/our-vision-for-improving-patient-experience-of-diagnosis

MyWordle Week 4: Steroids! A common treatment with a significant burden attached. Well done to all who have taken part in this mini campaign. If you have enjoyed this and would like to see more, or even if you feel you've learned something new, let us know below!

'Fabulous Fundraiser Friday' shout out number 3 today 📢 goes to Amy who is taking on the Bolton Iron Man 10km Night Run this evening 🙌

Amy is fundraising for myaware in memory of her grandad. Thank you so much Amy, we are sure your grandad would be extra proud of you tonight😊 Good luck with the run!

https://www.myaware.org/fundraisers/bolton-iron-man-10k-night-run-

Next up on our 'Fabulous Fundraiser Friday' shout outs 📢 today is Martin Finn.

Martin has set himself a 'MyMiles' challenge of cycling coast to coast across England and he sets off today at around 1pm with his route being: South Shields, Durham, Barnard Castle, Kirky Stephen, Oxenholme, Morecambe. It will be around 200km distance with 2000m climbing over 2 days!🙌

Good luck Martin - we hope the weather conditions are favourable and thank you so much for fundraising for myaware 🙏

Read more about Martin's challenge, read his updates on his journey here:
https://www.justgiving.com/page/martin-does-some-miles-123

📅 Day 27 of My Awareness Month! 📅

Just in case you've not already checked out our new resources and information, please see the link here - you may well find something that could really help you or those that come along behind you in improving diagnosis time and getting treatment quicker.

👀 Take a look, what have you got to lose!

https://www.myaware.org/Listing/Category/mam

MyWordle Week 4 is now live! 🧐 Our last one for MAM, hope you've enjoyed this campaign. See if you can solve the puzzle:
https://bit.ly/MyWordleWeek4
Share your score in the comments below when you're done! Good luck, and check back here on Saturday for the answer!

Make Your Own Wordle Guess the hidden word in 6 tries. You can also share your own word!

MyWordle Week 3: Genes! A special nod to CMS. Our final puzzle will be posted on Wednesday.

👉'Fabulous Fundraiser Friday' shout out📢 today goes to one of our amazing 'MyMiles' fundraisers, Tyron, who has so far raised a fantastic £695 🙏

👉Tyron will be walking a marathon distance tomorrow, (22nd June), through London finishing at Waterloo Station. 🙌 It's going to be a hot one Tyron, make sure you have plenty of refreshment stops along the way 🥤😀 and good luck and thank you from us all at myaware.

👉 You can read Tyron's inspiration for taking on this challenge here: https://www.justgiving.com/page/distancefordeano

🌟 Myasthenia Awareness Month is not just something the UK or myaware are marking! 🌟

🌏 Find out what other organisations are doing around the globe to raise awareness of myasthenia here and feel part of the wider campaign: https://www.myaware.org/Pages/FAQs/Category/global-awareness

MyWordle Week 3 is now live! 🧐 Halfway through MAM! See if you can solve the puzzle:
https://bit.ly/MyWordleWeek3
Share your score in the comments below when you're done! Good luck, and check back here on Saturday for the answer!

Make Your Own Wordle Guess the hidden word in 6 tries. You can also share your own word!