....from diagnosis to a cure!
Family day - Sat 23rd July 2022
Please download, complete and return the following:
Cure Myotonic Dystrophy UK (Cure DM)
Saturday 23rd July 2022
We are delighted to be celebrating our 6th Annual Myotonic Dystrophy Awareness Day in person again, after two years of virtual celebrations.
Why Alton Towers?
Cure DM are facilitating the community to meet others with Myotonic Dystrophy and enjoy a family day out. It is often difficult to meet others, so we are helping provide a fun activity which can be enjoyed by the whole family. We chose Alton Towers as it appeals to a full range of ages and abilities, is a central location in the country and we have had good feedback from other events at the venue.
No unfortunately not! Alton Towers is a huge theme park and is open to the public. However, we have privately hired the TOWER ROOM at the entrance to the park (just through the main entrance, opposite CBeebies Land) for the whole day, and you are welcome to pop in and out throughout the day as you like. It is also a great meeting point if you arrange to go around the park with others. (See map)
Saturday 23rd July 2022.
Alton Towers will open at 10am. Ride queues close at approximately 5/5:30pm (this can change on the day depending how busy they are). We are asking people to visit us at the Tower Room when they arrive. The Park closes at 6pm (subject to change).
The Tower suite will be open for you to visit between 10am and 6pm.
How much will it cost?
Cure DM are delighted to be able to subsidise attendance, due to the generosity of our fundraisers and supporters. We hope this means that more of our community can join us.
Cure DM will purchase, so can provide FREE tickets and lunch for:
· Child/Adult with Myotonic Dystrophy
· Siblings of child/young adult with Myotonic Dystrophy
· Free carer for each person with disability
Reduced price tickets available for friends or family who would like to join on the day:
· £27 per adult (12 years+)
· £23 per child (3-11)
· Free carer for each person with disability
· Child under 3 – FREE
Day tickets are currently priced at £62 on the day (£42 in advance), so we are delighted to be able to offer at this discounted rate.
Please note, we will need personal information and evidence to show to Alton Towers to enable us to provide your free carer passes. This information will not be used for any other purpose and will be destroyed after the event.
We will be asking the group to meet back at the Tower room for lunch, at 1.30pm
A buffet meal with a choice of hot and cold items will be provided for free for:
· Any Child/Adult with Myotonic Dystrophy
· Siblings of any child/young adult with Myotonic Dystrophy
Further meals can be purchased for other attendees at the following rate:
· £10 per adult
· £5 per child
Please order and provide any dietary requirements on the application form.
Can I come back on the Sunday?
We understand that it may be a long way to travel for just one day, and after the excitement of a community meet up on the Saturday, some families may like to go back to the park on the Sunday.
Cure DM are delighted to have arranged with Alton Towers for the above discounted ticket prices to also be available on Sunday 24th, which can be purchased via us.
How do I register/book?
Please fill in the following registration/booking form and attach any disability evidence as required. See this link for evidence requirements
For safeguarding and to comply with Charity regulations, we require everybody joining us on the day to be registered via these forms.
We will contact you with confirmation, and to arrange any payment for tickets, meals or T-shirts, once forms have been processed. Balance must be paid 4 weeks before the event, or upon booking if after this date.
Complimentary parking is included with tickets purchased via Cure DM. Details will be included with your tickets.
If you purchase tickets yourself, please remember to include parking as required by Alton Towers.
Past experience of access to rides at Alton Towers has been great and you can usually avoid or greatly reduce queues. However, access varies between rides, so please read the Alton Towers information on access passes here.
Please note, in particular, that each disabled person needs to be accompanied by an able-bodied carer in case of emergency.
Cure DM are delighted to be able to support you with applying for access passes on your behalf, in advance. This will mean that you do not have to go to guest services upon arrival and will be able to access the park straight away.
Please note, we will need personal information and evidence to complete the application process. This information will not be used for any other purpose and will be destroyed after the event.
If you prefer to organise your own access passes, visit the link above for information.
It is up to you to arrange accommodation if you want to stay over. There are Premier Inns, Travel lodges, Air BnB’s and many other local accommodations nearby.
Receiving tickets and passes
Tickets purchased tickets via Cure DM will be sent in the post via recorded delivery prior to the meet-up. Car parking is included.
If we are pre-ordering access passes on your behalf to speed up your entry on the day, please collect these from the Tower Suite upon arrival.
Allow yourself plenty of time to get to Alton Towers and plan your route beforehand. Setting off earlier than the Sat Nav suggests the journey will take could reduce the risk of you arriving late, bearing in mind that queues can sometimes be long.
The Monorail takes visitors from the car park to the Theme Park entrance. The Monorail opens from 9am (Subject to operational restrictions) each day and closes one hour after the advertised ride close.
There is (limited) disabled parking close to the main entrance, which takes you straight into the mark, avoiding the monorail.
Alternatively, you can walk from the car park to the theme park entrance. It takes between 10 and 30 minutes depending on where you have parked your car.
Estimated Car Park walking times to Entrance:
A,B,C - 10-15 Minutes
D,E,F,G,H - 18-22 Minutes
J,M,N,O,P - 22-28 Minutes
Please note Alton Towers is a big place and you need to park up and allow time to get to the Entrance. When you arrive, please visit us in the TOWER SUITE, where a Cure DM volunteer will welcome you, and you can meet others from the group.
It is your own responsibility to get to Alton Towers and collect your tickets in time.
For any ID requirements for the park, age limits for rides, transport/parking questions or questions about disability, please refer to the Alton Towers Website.
Meeting space/Lunch room
Within Alton Towers, we have the use of a room called the Tower Suite for the whole day. This is a very short walk from the theme park entrance, opposite the entrance to CBeebies land.
You are welcome to visit the Tower Suite at any point if you just want a sit down (perhaps stop your head spinning after one of the rides!) or even just to warm up (in the event of cold weather!) It is our own space for the day and is for use by Cure DM attendees only.
On the day
Arrival: We understand everyone will want to arrive in their own time but ask that you pop in to see us when you do. This will give us the chance to confirm your attendance, give any information about the day, and put a face to the name. There will be a Cure DM Volunteer in the room all day.
You can also leave bags if you wish, however please note that the room will not be secured, and we cannot guarantee the safety of your items.
We therefore recommend that you do not leave any valuables.
1.30pm: Lunchtime Meet-Up.
One or two of the Cure DM team will say a few words to the group and photos will be taken.
Everyone will gather in here at lunchtime and you will have the opportunity to really get a sense of just how many of us are in the park. You will have chance to chat to others who are maybe not in your group for rides, or who you have met online but not face-to-face. This meet up is a true highlight of the day!
Please plan your timings to aim to be with us for the lunchtime meet up. The Park is very large and quite spread out, so keep an eye on your watches.
Dinner will be via buffet (as per the menu) and is ordered in advance, so please make sure you mark your requests on the order form so we can make sure we order enough food.
Photos & Filming
Whilst this event is a peer support meet-up event, it is also a chance for awareness. This is so very important and is a significant part of the Charity aims.
We may have a volunteer photographer who asks if they can take your photo, or takes photos on rides etc. We also ask that you share your photos with us, either via email or via the Facebook pages. This is to remember the day but may also be used to further publicise our work so the images may be used in a public domain.
We want everyone to come along and have a good time at Alton Towers and don't want anyone worrying about photos of them going out publicly via Cure DM. We will be taking photos at this event and also request groups/attendees send us any photos they take around the park.
We cannot guarantee that you won't get captured on camera, however, on the application form you can state ‘no photos’. We will ask for one photo of you for our records so that we can identify you in any photos afterwards. This will ensure you will be removed or blurred out from Cure DM photos before anything goes out publicly on Cure DM website and social media. We ask that you make a conscious effort to remove yourself from posed group photos where possible as these will be used publicly and to advertise future events.
(Please note that we cannot guarantee that other attendees won't take and share pictures on their own social media. Please also see Alton Towers own photo policy for how they might use any of their photos taken round the park).
Other useful Information
Cure DM Families Day T-shirts, Hoodies and Beanies!
You can order your Cure DM Families Day meet up merch via the registration form.
It is not compulsory to purchase a T-shirt or hooded top, however we would recommend that you do as it will help you to feel included and a part of the event on the day. Seeing others wearing the charity tops will help create a supportive atmosphere in the park, and it is fun spotting others on the day (particularly the children so please do make the effort if you can!).
It would be amazing to see a sea of green on the day, we would love you all to wear a commemorative shirt or hoody. Not only does it create awareness in the park for those outside our group, but it also helps create a sense of unity between our attendees. It can be very powerful to spot others from the community and see that there are lots of friendly family and friends in the park who know all about Myotonic Dystrophy. We are hoping that this will lead to a positive and supportive atmosphere in the park.
The weather in July can vary considerably, although we have been very lucky for this weekend at all of our past community meet-ups. You may prefer to wear your Cure DM t-shirts on OVER jackets if it is cold, so we encourage you to buy t-shirts/hoodies big enough to wear over layers if needed.
If you are a bit nervous and don’t feel comfortable wearing Charity branded clothing, that is totally fine and understandable - it is not a requirement to attend. But for everyone that is happy to do so, we really encourage it!
Please note we sell hoodies & t-shirts at a discounted rate if you purchase them ahead of time when you order your tickets. We might have a small selection for sale on the day, but these may be more expensive. As they are event specific, we cannot guarantee to have your size, or any at all, so PLEASE do order in advance if possible.
We will set up a private Facebook group before the event and invite attendees to join so they can virtually meet others before the day to help break the ice.
It’s nice for people to share their excitement ahead of the day and a great place to ask questions, to meet and get to know each other ahead of time. We will send links to join upon confirmation of attendance.
Please note this is a different group to the general Cure DM Facebook group. Please contact us if we have not invited you by July!
Managing expectations and reactions
We haven't experienced any problems at our previous events and generally people are just interested and have been very supportive.
Sometimes people are concerned about reactions from others, who may not be familiar with Myotonic Dystrophy or disability. Generally, people may stare (or say stupid things) because they do not understand, or it is something they have never seen before. Take this as an opportunity to educate!
If anyone asks questions, just answer them politely, point to your T-shirt or invite them to come and speak to one of the Cure DM Volunteers in the Tower room. We find that when a large group gathers, people are interested, and this is a great opportunity to raise awareness which is one of our main aims as a charity. The more we educate people, the less of an issue it is!
If any of you do get upset by something during the day or afterwards, feel free to message us. We're sure once we are all together, we will all be supporting each other, but you can call us anytime and we will do our best to help.
We have always had overwhelmingly positive feedback from past events, with people pointing out how nice it is to be around others living similar lives.
If it is your first time coming along to an event like this, you might be nervous wonder what to expect. We are sure you will not be the only one feeling this way! You will keep spotting Cure DM tops as you go round the park, and if you join a group, it gives a nice opportunity to chat to others. Everyone is there to support each other. It might be enough for you to just see other people with Myotonic Dystrophy and wave, or you may want to get involved and chat to people or say hello. If you struggle at all on the day, then please contact a volunteer who will try to help.
Myotonic Dystrophy is highly variable between individuals, and sometimes meeting others who are further on in their journey than you can have an emotional impact. Often, we may keep things to ourselves or put on a brave face (whether you are the person with DM or a parent/friend/partner). If you are the only person you know with DM, suddenly meeting so many others who understand the journey you are on can make you feel quite emotional.
Whether you are feeling anxious or uplifted, we are here for you! Please get in touch.
Please join it the buzz from the event and remember, the Cure DM Volunteers and the community on Facebook group is there for you to share anything you need or to provide support afterwards. Don’t forget that you can always email us or contact us on social media.
You can contact us via email at firstname.lastname@example.org or via our charity social media pages.
"This site is owned and operated by Cure DM, which is a registered charity. Nothing contained in this site is or should be considered, or used as a substitute for medical advice, diagnosis or treatment. The site owners and administrators cannot accept any legal or personal liability for the outcomes of actions taken by you in using this information. This site and its information do not constitute the practice of any medical, nursing, registered dietitian or nutritionist, or other professional health care advice, diagnosis or treatment.
All items and articles are written by individual authors. The opinions expressed are entirely the authors' own, except where clearly indicated. We strongly advise you to speak with a medical professional about all aspects of the condition."