Metabolic Disorders Awareness Week 2018!

It’s just over a week since Metabolic Disorders Awareness Week 2018! For Metabolic Disorders Awareness Week, we had plenty of plans on the cards! From our parliament event, where we officially relaunched as Metabolic Support UK, to the hundreds of people who took on the Metabolic Mile, it was a very exciting week!

 

Metabolic Support UK Relaunch at Parliament!

Credit: Matthew Rowland.

Monday 2nd July was the date of our official relaunch as Metabolic Support UK, which took place at the Houses of Parliament!! As many of you may be aware, we decided to change our name at the beginning of May after conducting many focus groups about a potential name change. Overall, most people were in favour of the name change and Metabolic Support UK was chosen as the new name to reflect a new era in the life of our patient organisation!

 

Our parliament event was attended by a wide range of people from the Inherited Metabolic Disorders community. Attendees included patients and families living with Inherited Metabolic Disorders, patient organisations supporting those with rare conditions and Inherited Metabolic Diseases, and pharmaceutical companies, who provide the vital medication and research that support patients living with Inherited Metabolic conditions.

 

The event was started off with a few words from our Acting Chief Executive, Joanne Taylor, our Chair, Nigel Eaton, one of our trustees, Josie Godfrey, and one of our patients, Tom Wadsworth. All talked of the work Metabolic Support UK do and how changing the name would help us reach out to more patients and make it clearer about the conditions we support.

 

Everyone was able to chat at the event and it was a great way to bring the Inherited Metabolic Disorders community together.

 

Goodie Bags!
Credit: Joanne Taylor.

At the end of the event, everyone was given a Metabolic Support UK goodie bag, which included one of our new Metabolic Support UK Patient Leaflets, one of our new magazines, Metabolic Matters, a Metabolic Support UK pen, and a Metabolic Support UK cupcake!

 

The event was a very special way to open Metabolic Disorders Awareness Week and for us to officially relaunch as Metabolic Support UK!

 

If you want to learn more about the Metabolic Matters magazine and how you could feature in the magazine or receive a copy, please contact Maggie on margaret@metabolicsupportuk.org.

 

Facebook Profile Picture Frames

For Metabolic Disorders Awareness Week, we encouraged you all to change your Facebook profile picture to include our Metabolic Support UK frame! We were amazed by how many of you changed your profile picture to show support for Metabolic Support UK. By everyone changing their profile picture, it can help raise more awareness of our patient organisation and allow us to educate more and more people about Inherited Metabolic Disorders and the impact it has upon families and patients.

 

#MetabolicMile

This year we launched our new campaign: the Metabolic Mile! We were overwhelmed by how many of you got involved and took on a Metabolic Mile to show support and solidarity for those living with Inherited Metabolic Disorders. The Metabolic Support UK team did their Metabolic Mile around Chester Business park in 80’s fancy dress! Throughout the week so many different miles were done – from those dressed as superheroes and princesses to those doing it with friends, family and pets – there were so many miles done and we loved seeing them all!

Team Metabolic Support UK in 1980s Fancy Dress for their Metabolic Mile!
Credit: Joanne Taylor.

Donations

This Metabolic Disorders Awareness Week, some people decided to make their Metabolic Mile a sponsored challenge! You raised some incredible money for Metabolic Support UK – at the moment the total stands at £2,287.02! From the £1 donations to the donations totalling to hundreds of pounds, every contribution is appreciated and helps us provide vital services to families and patients living with Inherited Metabolic Disorders.

 

There’s still the chance to donate to our Metabolic Mile Just Giving page via the following link: https://www.justgiving.com/campaigns/charity/climb/metabolicmile.

 

Wristband Pride!
Credit: Joanne Taylor.

Wristband Pride

Following on from our #mymetabolicselfie campaign we launched a couple of years ago, where we asked you all to take a selfie with your wristbands, we’ve seen a growing pride in our wristbands! During this year’s Metabolic Disorders Awareness Week, we were giving away our wristbands for free and saw so many of you showing off your wristbands and helping us start the conversation about Inherited Metabolic Disorders with others.

 

 

 

Metabolic Disorders Awareness Week 2018 has been amazing! From the many miles you’ve all walked, cycled, run and done, as well as raising more and more awareness about Inherited Metabolic Diseases through changing your Facebook profile pictures, wearing your wristbands with pride and sharing your stories, all your efforts to support Metabolic Disorders Awareness Week have been incredible! We’re so grateful to have supporters as wonderful as you all are and thank you all so much for your continued support.

 

Want to Further Support Metabolic Support UK?

You can discover more ways to fundraise for Metabolic Support UK by contacting Maggie on margaret@metabolicsupportuk.org, or keep an eye out for upcoming news about our new Ambassadors programme!