Myotonic Dystrophy Awareness Days

 

International DM Family day - 24th July 2021

 

International Myotonic Dystrophy Awareness day - 15th September

 

 

 

We are delighted to announce that in addition to the family day in July, the 15th September 2021 will see the launch of the International Myotonic Dystrophy Awareness day, with the first ever collaboration of worldwide Myotonic Dystrophy-focused groups.

The day aims to garner the attention of the wider general public, researchers, healthcare professionals, fundraisers and anyone with an interest in changing the future for those with Myotonic Dystrophy. 

READ THE FULL JOINT PRESS RELEASE HERE

Visit the International Awareness day page on the MDF Website here, to see how you can get involved!

 

Family day

It was 2016 when we realised there were no awareness days for Myotonic Dystrophy. Well, we couldn't have that - so we started our own celebration day. The 4th Saturday of July became International Myotonic Dystrophy Family day!

This is a day for the community to come together to support eachother, celebrate the 'family' we have found. DM has many challenges, but one thing everyone agrees on is that we ARE a family. UK, USA, Europe, Asia.... wherever we are, we all face similar challenges, and the support our community provides is worth celebrating. Our family day has been described as a day of fun, a day to share stories and experiences within our groups, a day to feel part of something bigger, a day to meet up with others,  raise awareness and positivity. This is not a day for fundraising or campaigning - this is a FAMILY day.

Our next family day is on Saturday 24th July 2021, and we would love you to get involved! How will you celebrate the day?

We have organised a fun filled day (weekend or week!) at Butlins Skegness, and would love to see as many families there as possible. You can read more below, or by visiting our dedicated facebook page.

CURE DM BUTLINS AWARENESS DAY GATHERING - 2021

If you are unable to join us in person, but would like to support the day in your own way, please do get in touch - we would love to hear your ideas!

 

 

 

!

24th July 2021 - Upcoming Family day!

Our 5th DM Family day!

Would you like to join us at Butlins Skegness, to celebrate our 5th year celebrating our community?

We already have a great event planned - with families joining us for the day, weekend, and this year some families are even staying for the week!

Cure DM provided support for people to attend over the last 2 years, and we would once again like to extend this to our community - please email us on CureDM@Outlook.com for information and to register your interest.

This year we also have accommodation at reduced rates, so contact us before booking direct.

After a difficult year, we are so looking forward to bringing our community together for some fun times, and hope you can join us.

25th July 2020

4th Awareness day - the Covid year!

This year did not go exactly as planned - we had a great event planned for our community to attend Butlins, however due to Covid this was rearranged for 2021. We put on our thinking caps on and found a way to spread awareness from our lock-down living rooms!

It couldn't have gone better - we made Awareness Day badges and sent them all over the world. We are delighted to have sent out 600 badges to the UK, USA, Canada, Japan and even Australia!

The day was marked by an on-line campaign, where we shared stories, information, support and news every hour via our Facebook page. You can see some of what we shared here.

Cure Myotonic Dystrophy Awareness Day 2020

People changed their on-line profile pictures on facebook and twitter - it was amazing to see so many MILES images!

We also had an updated collage made to celebrate our UK CDM community, and help raise awareness of our amazing children.

Artwork: Liam Murray for Cure DM CIC 2020 

27th July 2019

A Butlins reunion, and the start of a tradition!

This year we held our 2nd Butlins Gathering, which was a huge success with over 70 people attending. It was so wonderful to see our children and families spending fun, quality time together - some of us stayed for the whole weekend and made plans to stay for a week next time!

It seems a tradition has been formed - we all love this weekend so much we decided to come back again!

Once again we produced badges and sent them all over the world, and had facebook and twitter profile pictures changed. It was good to see more of our USA family getting involved this year and we hope to increase the 'International' part of our awareness day next year!

14th July 2018

Awareness of our children and International 'family'!

On our 2nd International Awareness day we produced an amazing collage of all our children, to help spread awareness of Congenital Myotonic Dystrophy. To make it truly 'International' we invited our overseas DM family to join in, and the final piece was truly wonderful. 

We celebrated the day by organising a meet-up at Butlins Skegness, and were delighted when almost 50 people joined us. We were pleased to help support families attend by providing free tickets or a donation towards travel costs. Thank you to Daytrippers UK for supporting us with this.

We hired the whole of the bowling alley out and had so much fun, with families getting the chance to get to know eachother. Later on we hired the restaurant and had a lovely meal and drinks together.

It was an amazing weekend and we are so pleased to be able to offer this to our community.

Artwork: Liam Murray for Cure DM CIC 2018

Artwork: Peter Ashley and Cure DM CIC 2018

 

30th July 2017

    Our FIRST awareness day!

In 2016 we realised we didn't have an awareness day for Myotonic Dystrophy, there were lots for Muscular Dystrophy, but nothing specific for us - so we decided to change that and plan one for the following year.

We chose the end of July because this was the best time for people with children to be able to meet up (school holidays) and we wanted to mark the occasion with an annual get-together.

We marked the occasion by making profile pictures, having badges made and organising a meet up. we decided to use 'bubbles' to represent the breathing difficulties many of our community have, but that we can find ways round this - such as bubble wands. Also - who doesn't love bubbles!

Our meet up was in Birmingham were a large group of us had a lovely picnic, and many photos were taken. Friendships were formed and memories made - we decided this was going to be one day a year where our families would have fun together.