Does Alopecia UK accept hair donations? Expand Alopecia UK does not accept hair donations. Being a small charity, we do not have the resources to process hair donations. There is a charity called the Little Princess Trust (LPT) that accept hair donations and provide free wigs to children and young adults aged 24 and under with medical hair loss, including cancer and alopecia. Some individuals who cut their hair as a way of raising awareness, ask their family and friends to sponsor them for the haircut. Many choose to do this to raise much-needed funds for Alopecia UK, whilst donating the hair donation to Little Princess Trust. This is a great way to support two causes.
How do I set up a fundraising page for Alopecia UK? Expand It is simple to set up a fundraising page on our website. Just follow the instructions provided and we will approve your page as soon as we can. Create your fundraising page here. If you set up your page on a weekend, you will need to wait until the next working day for your page to be approved. Alternatively, if you prefer the Justgiving platform you can set up a fundraising page with them here. We encourage fundraisers to set up pages on our website because the fees are lower than Justgiving. We are happy to welcome pages on either platform.
What fundraising events do you have that I can get involved in? Expand Being the small charity we are, we do not have our own fundraising events for you to join. We rely on inspiring individuals to do their own thing to raise funds and awareness for Alopecia UK. If you are looking for inspiration, check out our Fundraising Ideas - A-Z. Or have a browse on our website to see what others have done to raise funds for Alopecia UK. We do not have the capacity to purchase large numbers of places in externally organised challenge events. Again, we rely on individuals securing their own places and using those to raise funds for Alopecia UK. There are lots of different events from a variety of event organisers across the UK.
Arrival Information and Ticket Collection Expand Arrival Please allow yourself plenty of time to get to Alton Towers and plan your route beforehand (see Alton Towers website). Setting off earlier than the Sat Nav suggests the journey will take will hopefully reduce the risk of you arriving late. Please note Alton Towers is a big place and you need to park up and allow time to get to the Entrance Plaza (where we will be). 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. Alternatively, you can walk from the car park to the theme park entrance. It takes between 10 and 30 minutes, depending where you have parked your car. 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 Ticket Collection You must collect your tickets and event packs between 9:15am and 10:00am from AUK Volunteers (who will be wearing yellow high viz vests and blue Alopecia UK t-shirts) at the park entrance plaza.You will soon spot us (look for all the blue t-shirts)! Please bring either your confirmation email (paper or digital) OR proof of ID in the name of the person who booked in order to collect your theme park tickets. Organised groups will start going around the park at 10am. If you are late: If arriving after 10am please text the event organiser (details will be sent to those who have booked closer to the time) and include your name and estimated arrival time. Please DO NOT PHONE! That first hour is really busy for the volunteer team and unfortunately no one has time to answer the phone. Don’t worry we will not just leave you. Once most of the attendees have gathered their tickets we will check the phone to see who has sent a text. Please bear in mind though that we will only wait until 11am before going in to the park. What to do after ticket collection From 9.30am (once you have collected your tickets) you will be able to enter the park. If you would like to join one of our organised groups you will be able to head to the Hospitality Suite to meet the group volunteers and other attendees. Organised groups will start heading around the park at 10am. If you would prefer not to join an organised group you may start heading around the park from 9.30am. Don't worry there will be plenty of AUK volunteers around to help you figure out what to do and where to go!
Can we bring any of our own food and drink to the centre? Expand You are able to bring along some snacks if you would like; however, the kitchen will provide three meals per day and there will be fruit available throughout the day. There is also a tuck shop on site should you wish to bring along some money. No alcohol is allowed to be consumed on-site.
What’s included in the price of the ticket? Expand (Please note - Our activity schedule hasn’t been confirmed yet however here is a list of all the activities the centre provides) Included in the rest of your ticket are: Accommodation for both Friday and Saturday night. Dinner Friday night Breakfast, Lunch and Dinner Saturday Breakfast Sunday morning All activities
Common Treatments for Alopecia Areata Information about common treatments for Alopecia Areata Expand Topical corticosteroids Topical steroids are creams, ointment, lotions, or foams that are applied directly to the scalp or skin surface. The aim of topical steroids is to dampen down the inflammation within the skin. There are different strengths and formulations available. Usually a potent or very potent topical corticosteroid is needed to treat Alopecia Areata, as weaker products tend to be less effective. The formulation prescribed is important, as some preparations (e.g. ointments or creams) are often too greasy to be tolerated regularly on the scalp. Advantages Studies have demonstrated hair regrowth with the regular use of potent topical steroids. They are commonly used in children and adults, as they are easy and painless to apply. Disadvantages Their effectiveness is limited by their absorption through the scalp. If used excessively over a long period of time, there is the potential risk of skin thinning and enlarged blood vessels in the skin, causing it to look red. Intralesional corticosteroids These are steroids that are injected into the affected areas just underneath the skin using a fine needle. Examples of intralesional corticosteroids are hydrocortisone acetate and triamcinolone acetonide. Advantages Intralesional corticosteroids have shown to be more effective than topical corticosteroids for hair regrowth. When intralesional corticosteroids are effective, hair growth is usually seen at the site of injection within four to six weeks. Disadvantages There is a risk of skin thinning that can cause a temporary depression (or dint) at the site of injection. The needle prick can be uncomfortable and the whole area that can be treated in one go is quite small; therefore, it is usually only used for fairly localised patches and smaller areas of Alopecia Areata. Intralesional corticosteroids are not routinely offered to patients with Alopecia Totalis or Alopecia Universalis. Steroid injections can only be performed by medically qualified practitioners. Systemic corticosteroids These are steroids that are taken orally as a pill or injection in the muscle (intramuscularly). Examples are oral prednisolone or intramuscular triamcinolone acetonide (Kenalog). Systemic corticosteroids mimic the effects of hormones your body produces naturally. When systemic corticosteroids are given in doses that exceed your body's usual levels, they suppress the immune system, which can allow hair to re-grow. Systemic steroids are often used as a short-term measure to try to stop the hair from falling rapidly or “kick-start” the hair to regrow. Long-term systemic steroids are usually avoided as they can cause serious side effects when taken for too long. Advantages It is a tablet taken every day, therefore easy to take. This treatment can be used for patchy Alopecia Areata and more extensive hair loss (Alopecia Totalis or Universalis). Treatment with systemic corticosteroids will produce hair re-growth in some patients. Disadvantages Most young patients tolerate this well with no side-effects. Some side-effects include heartburn, increase risk of infection, weight gain and restlessness/mood disturbance. Long-term systemic corticosteroid use is associated with serious side effects including diabetes, high blood pressure and bone thinning. This treatment also has a high rate of hair loss recurring once the treatment is stopped. Contact Immunotherapy The aim of this form of treatment is to induce a local allergic skin reaction (contact dermatitis) that stimulates hair re-growth by distracting the immune system from attacking the hair follicles. In the UK Diphenylcyclopropenone (DPCP) is the most commonly used treatment. In contact immunotherapy, the treatment is initially applied at a higher concentration to a small area of the scalp or the arm, in a process called sensitisation – this makes the person allergic to the solution. Two weeks later a weaker concentration is then applied to the affected areas on the scalp. The solution usually remains on the skin for up to 24 hours and is then washed off. The aim of treatment is to cause a low-level reaction lasting 24-36 hours, with the scalp feeling a little itchy, red and flaky. The strength of the medication is gradually increased, depending on the level of the reaction. Advantages Current research shows that 50-60% of patients with Alopecia Areata achieve a worthwhile response, although those with more extensive hair loss (e.g. Alopecia Totalis and Alopecia Universalis) do less well. Treatment is usually continued weekly until the hair has re-grown, which may take up to 12 months to achieve. Disadvantages This treatment requires a significant time commitment as usually it is only available in hospital departments and requires repeated applications over a period of months; home treatment is not widely available in the UK at the moment. The side effects of contact immunotherapy include dryness/ redness of the skin (appears like Eczema), hives, small itchy blisters on the feet/ hands (called Pompholyx) and the loss of pigment in some areas leading to white patches (called Vitiligo). The lymph glands in the neck and armpits may become enlarged as a response to the treatment. It is important to avoid these medications touching other areas of the body; therefore, gloves and other PPE should be worn by the practitioner applying it. The team at Salford NHS Foundation Trust have very kindly put together these helpful videos on: DPC Sensitisation: https://youtu.be/ONONMpXRH_w DPC Treatment: https://youtu.be/8sw3-oRLGBs
Managing Expectations and Emotions Expand Reactions from Others Ok, so we all know that looking a bit different can sometimes result in people becoming curious and looking for that little bit too long! While we’re sure it will generally all be fine, we’re mentioning this because if you are going out for the first time without any wig/hat/headwear then you might get a reaction from others that you are not used to and we want you to be prepared for it. Generally, people stare (or say stupid things) because they do not understand or it’s something they’ve never seen before. Take this as an opportunity to educate! Just give them a nice big smile and point at your t-shirt! If anyone asks questions, just answer them. Once they know, they know. The more we educate people, the less of an issue it is! We haven't experienced any problems at our previous Alton Towers events and generally people are just interested in what we were doing. If any of you do get upset by something during the course of the day or afterwards, feel free to give us a ring. We're sure once we’re all together that we’ll all be supporting each other, but you can call us anytime and we’ll do our best to help, even if it’s just to listen. Nerves If it is your first time coming along to an event like this you might be really nervous and not know what to expect. We assure you that you are not the only one feeling like this and there will be many others trying to talk themselves out of it! But honestly once you get there you’ll be fine. What you get out of the day can depend on what you put in however so please get involved and just chat to people or say hello. You’ll keep spotting blue t-shirts as you go round the park and if you join a group it gives a nice opportunity to chat to others who will really know how you’re feeling. Everyone is there to support each other. It might be enough for you to just see other people with alopecia and, if so, that’s great. If you struggle at all on the day then please try and find a volunteer who can help. Afterwards Alopecia is something that gives us many ups and downs in life and sometimes we can keep things to ourselves or put on a brave face (whether you are the person with alopecia or a parent/friend/partner). If you are the only person you know with alopecia or being affected by someone close to you having alopecia, suddenly meeting so many others who understand the journey you’ve been on can get you feeling quite emotional. It’s also a big thing to do putting your alopecia on show when you don’t normally (not that this is expected of anyone). All of this mixed together along with the adrenalin of going on some rather scary rollercoasters might make you feel a bit all over the place. Generally giving you a big high and then possibly feeling a bit drained afterwards. Basically what we're saying is it might make you want to have a bit of a cry at some point! And if it does, that is totally fine and perfectly normal! Just go with it. If you’ve got someone there who can give you a big hug while you do then great, and if you don’t just give yourself a big hug and remember how flaming fantastic you are! And remember the Facebook group is there for you to share anything you need to share or get any support that you need afterwards. Don’t forget that you can email or call us if you need us too.
Lunchtime Meet Up Expand This is the big meet up for the day and can have a huge impact for those with alopecia as they can see how many others are there who are just like them. Try not to miss it because people are always annoyed at themselves when they do! Getting some lunch If you buy a sandwich through Alopecia UK (when you purchase your ticket) you will be given a voucher upon arrival (in your event pack with your tickets) and you can then collect your sandwich from staff in the Hospitality Suite. There are no food stalls in the Hospitality Suite other than the cash tuck shop (12-3pm) with drinks and chocolate/crisps. If not purchasing a sandwich through Alopecia UK, we recommend bringing a packed lunch as this saves any extra queuing time and means you can make the most of this get together time. Otherwise there are food outlets around the park (https://www.altontowers.com/explore/theme-park/restaurants-shops/) Note that while things look close on the Alton Towers map - it's very deceptive and is actually a long walk! Food queues can also take up a chunk of time. It's up to you how to manage your time but we share this as learning from previous years.
Base Camp Expand Within Alton Towers, we have the use of a room called the 'Hospitality Suite' for the whole day. This is a very short walk from the theme park entrance and we will circle it on your Park Map which you will receive in your Event Pack with your tickets. Timings for the Hospitality Suite 9:30 – 10am: Different to previous years Alopecia UK Groups will now gather in the Hospitality Suite rather than on the Plaza as it’s a bit warmer than waiting by the entrance gates. You can also leave bags/lunch there 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. 1:30 – 2:25pm: Lunchtime Meet-Up. 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 can also have chance to chat to others with alopecia who are maybe not in your group for rides. If you have pre-ordered a sandwich you will be able to collect it at this point. One or two of the Alopecia UK staff team will say a few words to the group at about 2pm. What do we have in the Hospitality Suite? Alopecia UK Merchandise Stall Forgotten to buy something? We will have a limited amount of stock available for sale at our stall in the Hospitality Suite. Different to previous years the stall will now only be available in the Hospitality Suite (we will no longer be set up on the Plaza in the morning). The stall will be open from 9:30am until 3pm. Tuck Shop A tuck shop will be selling some snacks such as crisps, chocolate and drinks. Tables, Seating & Breakout Space You are welcome to visit the Hospitality 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 Alopecia UK attendees only.
Important bit of the day (blue t-shirts!) Expand AUK T-shirts & Hoodies! One of the main things we always get great feedback on is the fact that the majority of our attendees wear our blue Alopecia UK t-shirts and hoodies throughout the day. Not only does it create awareness in the park for those outside our group, it also helps create a sense of unity between our attendees. It can be really powerful knowing that you are not the only one there with alopecia and that there are lots of friendly family and friends in the park who know all about alopecia. This leads to an incredibly supportive atmosphere in the park. "Being part of a sea of blue brings about a sense of confidence and support." "We all bought hoodies and hats and t shirts and wore them with pride." "The fact that everywhere you looked there was blue shirts and you knew you always had a friend nearby." "Seeing the field of blue and feeling part of a bigger group [was my favourite part]." "Just seeing the sea of blue was a boost. How many others all coming together." "Meeting up together to end the day "turning the train blue" finished the day on a high!" "Wearing the t-shirts and feeling proud about alopecia [was my favourite part]" "The t-shirts and hoodies were a great idea too so you could spot everyone round the park." "It gives my son a big boast to see he is not alone. The sight of all those blues is just amazing." The weather in April can vary considerably. We've had rain, we've had sun, we've had hot, we've had cold! On our 2015 trip to the park, it was pretty chilly! As a result, some attendees put their Alopecia UK t-shirts on UNDER their own jackets which made it really difficult to know they were part of the Alopecia UK group and create that same atmosphere of awareness, support, friendship and fun! For this reason we encourage people to buy t-shirts/hoodies big enough that they could wear them over the top of other layers. If you are a bit nervous and don’t feel comfortable wearing Alopecia UK branding, that is totally fine and understandable - it is not a requirement in order to attend. But for everyone that is happy to do so, we really encourage it! Please note we sell hoodies & t-shirts at the lower price IF you purchase them ahead of time, when you order your tickets. We will have a small selection of hoodies and t-shirts for sale on the day but these are slightly more expensive and we cannot guarantee to have your size available as this any small amount of stock is offered on a 'first come, first served' basis.
Photos & Filming Expand Whilst this event is an incredibly supportive event, it is also a chance for awareness. For this reason we often have a volunteer photographer or two following people around, trying to get some good images, both to remember the day and to use to further publicise our work and the images may therefore be used in a public domain. However 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 Alopecia UK. For this reason on the day of the event you will be able to register for ‘no photos’, this will entail taking one photo of you on the day so we can identify you in our photos afterwards. This will ensure you will be removed or blurred out from our Alopecia UK photos before anything goes out publicly on Alopecia UK 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 see Alton Towers own photo policy for how they might use any of their photos taken round the park).
Do we have the whole park to ourselves? Expand No unfortunately not. Alton Towers is a huge theme park! But we will organise for everybody to meet up so that you can go round the park in a group if you want to. See here for more information on the day.
Is everyone going to be showing their alopecia and removing wigs/hats to go on the rides? Expand It is about personal choice and whatever you feel comfortable doing. There will be lots of us around doing some awareness raising and taking wigs/hats off to go on the rides. We have found in previous years that lots of people actually want to remove their headwear and felt quite empowered doing so, particularly because it was amongst a large group of others with alopecia. Some people wear wigs and hats, others don't, and some just take it off in the queue for rides. The nice thing is that people feel free to choose. It can be quite a nerve-wracking thing to do if you don't normally show anyone your alopecia, if this is the case for you we would encourage you to join an Alopecia UK group just in case you do decide you want to remove headwear for going on rides. You certainly do not have to and you will be respected, as well as supported, in what you choose to wear or not wear. While many may have wigs/head coverings that stay on when going on rollercoasters, we want to create an environment where people feel comfortable to have the choice in what they do! (Weather permitting - it can be quite chilly in April!).
Do I have to buy a blue Alopecia UK t-shirt and/or jacket/hoodie? Expand It is not compulsory however we would recommend that you do as it will help you to feel included and a part of the event on the day. Everyone wearing the blue tops is what creates the supportive atmosphere in the park and everyone has fun spotting the blue tops as they make their way around the park (particularly the children so please do make the effort if you can!). If it is someone's first time and they feel a bit nervous about standing out as having alopecia, then it is perfectly understandable that they may not feel entirely comfortable wearing the blue tops. But trust us when we say they might feel differently on the day which is why we recommend getting a top just in case! It helps to have any accompanying friends and family in the blue Alopecia UK tops too. Power in numbers! You can read a bit more here under Useful Information.
Why a Theme Park? Expand Theme parks and rollercoasters can typically be an activity that people with alopecia either avoid or don’t enjoy as much as they should due to worrying over concerns about wearing wigs and hats on rollercoasters. Alopecia UK organised an Alton Towers day out for the first time in 2014. It was a fantastic day that was enjoyed by everyone, so much so that we decided to make it an annual event so that more people affected by alopecia can enjoy the experience.
What are Alopecia UK doing at Alton Towers? Expand Simply facilitating a large group of people to go and do an activity that is typically avoided by those with alopecia, i.e. going on rollercoasters. We find that having plenty of us there gives a confidence boost! You can find out more information about the day here.
Facebook Group Expand Over the past few years we have created a Facebook group ahead of the event to allow attendees to meet and get to know each other ahead of time. It’s nice for people to share their excitement/nerves ahead of the day and a great place to ask questions. We will send links to join closer to the time. Please note this is a different group to the general Alopecia UK Facebook group and you will not be able to find it through searching for it as it is also a secret group.
What sort of food will be available? Expand Please see here for an example food menu. All dietary requirements can be catered for. Please indicate any dietary requirements at the time of booking. These will then be passed to the Kingswood team to cater for.
Biobank for alopecia research Expand Alopecia UK (AAR-UK at time of donation) funds invested: £20,000 When: March 2017 Project type: Biobank for alopecia research Project Lead: Professor Simon Milling Length of project: 3 years Research Institute: University of Glasgow Condition of interest: Alopecia areata/totalis/universalis (samples also being taken from people without alopecia, for comparison) Funds being used for: Research Nurse to collect biopsies and blood samples for alopecia studies More information about the biobank: AAR-UK set out to establish the first alopecia biobank registry within the UK. To establish this, AAR-UK’s founder Jayne Waddell organised a meeting with Professor Iain McInnes from Glasgow University with a view to finding the best way to proceed for the biobank to be viable. An AAR-UK crowd funding campaign then followed which raised the £20,000 that was required to pay for the clinic to take the samples. Nicola McBride (AAR-UK Research Co-ordinator) worked closely with Simon Milling and Kym Bain from Glasgow University to set up the clinic for the biobank samples. Together with dermatologist Susan Holmes they secured the necessary ethical approval and developed the questionnaires required for the participants to fill in at the clinic with the research nurse. They also put provisions in place to safeguard the samples and ensure that participant’s personal information is protected. The clinic is now up and running and currently runs once a week on a Monday afternoon, usually at the Queen Elizabeth University Hospital in Glasgow. Volunteers from the Glasgow area contact the Research Nurse by e-mail, and an appointment is arranged. At the clinic, the Research Nurse obtains patient consent, completes the questionnaires with participants to get a detailed history, and takes the blood and tissue samples, giving the participant the home kit for stool samples to be handed back into the clinic. The samples are then stored within the biobank at the University of Glasgow. Participants are offered the opportunity to provide blood samples, skin swabs, skin biopsies and stool samples. The biobank was set up in conjunction with Glasgow University student, Kym Bain’s, PhD project which looks at the pathogenesis of alopecia areata and the potential link to intestinal inflammation. Kym's project is funded by Medical Research Scotland and has industry funding from pharmaceutical company, AstraZeneca. The project supervisors are Professor Simon Milling and Professor Iain McInnes (from Glasgow University) and Annika Ȧstrand (from AstraZeneca). Interested scientists can apply for access to samples from the biobank by contacting Professor Milling at the University of Glasgow. Potential participants from the Glasgow area can find more details about the study here. Updates from the Biobank: To date, over 100 volunteers have given samples to the Biobank, which is fantastic. Kym writes regular blog posts for us, to keep us updated on the outcomes of her research project using samples from the Biobank. These are available here: Time for T-cells (November 2018) Making sense of molecules (June 2019) Research Outcomes: Kym has published a paper looking at the immune system in alopecia, available here.