Category: Awareness

We were absolutely delighted to attend the Newcastle Mito Patient Information Day! 

We spent the day meeting and connecting with families impacted by mito, researchers and medical professionals working hard to improve the quality of life and care for mito patients, and our incredible fellow charities & organisations: The Lily Foundation, who we’ve collaborated with in our research funding previously, The Noah Jordan Foundation, a recently formed paediatric mitochondrial disease charity, and Muscular Dystrophy UK.

We took the opportunity to continue promoting our free medical alert wristbands for mito patients, designed to provide a little peace of mind. Anybody with a diagnosis of mitochondrial disease can order one online for themselves or on behalf of their loved one (UK only).

A big thank you to all the brilliant organisers of this event, and to all who attended! It was amazing to meet so many different families and hear their stories, and to discuss collaborations and developments with research specialists.

Why not follow our social media pages for more updates and insights from the day, and on our charity activities?

You can also subscribe to our e-Newsletter below…

We’re delighted to announce that our Medical Alert Wristbands are now available to order, free of charge for anybody with a mitochondrial disease diagnosis. 

Read on to find out more about the project, and how to order yours if you’re impacted.

Providing the kind of support those affected by mito want and need is at the very core of what we do. Time after time, we have heard that people are worried about whether they will get appropriate medical care where mitochondrial disease will be taken into account, either for themselves or a loved one – especially in an emergency situation, or where communication is difficult for any reason.

We listened, explored options and liaised further… and these fabulous wristbands are the result. We are thrilled to now be able to provide them free of charge for anyone with mito.

These superb quality wristbands have been developed by The ID Band Company and are adjustable to fit from wrist size 5.25 to 8.25 inches. Known as Medical Ultrabands, they are made from super soft silicone and are totally waterproof and ultra hard wearing, yet smooth, flexible and comfortable to wear.

(Left to right) Some of our valued missions modelling their wristbands: Callie’s Mito Mission, Ardglass; Aiman’s Mito Mission, Rochdale; Regan’s Mito Mission, Cradley Heath

This unique, bespoke version made especially for My Mito Mission and the mito community is in our vibrant, easily-seen green – the international colour for mito. The clear black text engraved on bright white panels gives direct access via a QR code to specialist mito guidelines and also to the level of additional medical and personal information each wearer would like. The clinical guidelines let medical professionals know if and when they need to alter the standard treatment according to mito patients’ needs, and who they can contact if they need further advice.

Medical wristbands can help communicate your medical needs when you can’t. In an emergency situation, or in a more general medical setting where there is no mito specialism, medical professionals can:

• be alerted to your condition
• gain quick access to specialist clinical guidelines
• be aware of any other medical needs, allergies etc.
• access personal information such as your name, your emergency contact name and their details

We initially launched the wristbands to our missionees, and have received some incredible feedback so far:

“Having a medical alert wristband gives me reassurance that people will know about my illness should anything happen and I’m unable to tell them.” – Steph, Bury St Edmunds

“Having our medical wristbands makes things easy for hospital stays and appointments; instead of repeating myself about mito each time, they can now scan the QR code and get all information they need.” – Melanie, West Midlands

A huge thank you goes to our valued missionees for their input in developing these bands, to the Newcastle Mitochondrial Disease Clinic, and to The ID Band Company!

Order yours now on our website – just scroll to the bottom of the page to find the order form, and fill in your details.

We were fortunate recently to have been invited to speak on both BBC Radio Leeds and BBC Radio Sheffield!

Our co-founder & chair Christine Beal was on BBC Radio Leeds earlier this month with the lovely Gayle Lofthouse to talk about all things mitochondrial disease and My Mito Mission!

Emma Sheppard, Lillia’s mum from Lillia’s Mito Mission also took to the airwaves this month, this time on BBC Radio Sheffield, with Ellie Colton. 

We appreciate any opportunity to raise awareness of mitochondrial disease, and are very grateful to both BBC Radios Sheffield and Leeds for their time and consideration.

At our recent My Mito Meet Up we held a competition for attendees to design a Christmas card for us to sell on our online shop!

We had a children’s competition as well as an adult’s. As tricky as it was to choose our winners, we finally settled on 5 stunning designs.

The winners of the children’s competition were Isabella Wall (8), Eddie’s daughter from Eddie’s Mito Mission and Katie Cowley (12) from Hazel’s Mito Mission.

The winners of the adult’s competition were Alison Fisher from Alison’s Mito Mission, Hazel Allen from Hazel’s Mito Mission, Dawn Hunt from Laura’s Mito Mission and Elizabeth Stanton and Sophie Caldwell, two of our fabulous volunteers. All our winners will receive a free pack of cards and are of course credited on the cards.

Congratulations to all our entrants and especially to our very worthy winners! 

Since receiving feedback from our missionees requesting a quick, simple way to ensure that they and their kids can show that they have mitochondrial disease in case of an emergency, we’ve worked hard over the past few months to come up with a design that works for everybody, in collaboration with the Wellcome Centre for Mitochondrial Research in Newcastle.

We’re now very pleased to be able to offer our bespoke medical alert wristbands, free of charge to anybody with mitochondrial disease (UK only)!

Medical wristbands can help communicate your medical needs when you can’t. In an emergency situation, medical professionals can be alerted to your condition and quickly access specialist clinical guidelines via the printed QR code.

These clinical guidelines let medical professionals know if and when they need to alter the standard treatment according to mito patients’ needs, and who they can contact if they need further advice.

Our wristbands are not designed to replace any personalised medical information you or your loved one may carry.

“Having a medical alert wristband gives me reassurance that people will know about my illness should anything happen and I’m unable to tell them.” – Steph, Bury St Edmunds

“Having our medical wristbands makes things easy for hospital stays and appointments; instead of repeating myself about mito each time, they can now scan the QR code and get all information they need.” – Melanie, West Midlands

Find out more on our dedicated webpage here, and get yours in our Mito Shop here.

At the recent My Mito Meet Up, we launched four new products to add to our merchandise range – now live in our shop!

We are thrilled with our fantastic new journals which can be used as a stylish notebook or to record your thoughts.

Our new water bottles will keep you hydrated whilst spreading mito awareness coming in our iconic green colour complete with our logo. 

We are also releasing a new version of our lanyards in an alternative colour: black with a green logo!

Last but far from least, our gorgeous new umbrellas are the perfect accessory whatever the weather, but come into their own to keep your dry in the rain.  Modelled in our pic by Danni from Lucas’s Mito Mission.

As usual, each sale can be credited to the mission of your choice.