From The Chair

Dear all,

Recent resignations of trustees have enabled us to find new people who would like to join us on the board of trustees. In addition to this I have considered changing the constitution, we have not looked at this for over 20 years now. Many things in the constitution can remain the same but other things like the number of trustees can change and the considerable large funds within research accounts can be looked at again so it can be better used to support the families and people with Worster-Drought Syndrome. This is your opportunity to make these changes. 

Why now? We have remained pretty much the same for so many years, with the same things happening but times have changed. Social media wasn’t even invented when the charity was set up. With so much information is available online now we are not really become a resource for that information, We have found ourselves mainly running family days for the younger children, while this is still beneficial for new and younger children it does leave a huge part of people affected by Worster-Drought out, this has also been shown by the drop in the numbers of our membership as a lot of you have taken to finding out information via social media and searching online. 

What does this mean for the charity going forward? This really depends on what you all would like. The current constitution doesn’t really reflect everything we can do now and under the current trustees it only meets the minimum requirements set by the charities commission. That said there is still a real risk of the charity closing and giving the money to a like minded charity. So many people have spend a lot of time raising money for us, it would seem a shame for the money to go to another charity rather than supporting us all. Giving this information my personal view as your chairman would be to use the money to enable the charity to grow and arrange some more events around the UK so each and every one of you can benefit from it. 

We cannot do this without you, I have spoken to some of the remaining trustees and members for their views this week. The view I have got back was to the charity to become more of a supportive role but in order for us to do this we need to think more local. With Worster-drought being so rare our membership is spread thinly around the country so arranging anything that pleases everyone is challenging. Experience has shown me that there are pockets of members around the country that due to their location don’t or can’t get involved like the Southeast and West of the UK and up north, this is a shame as both of these areas are beautiful parts of the country and have and have a lot to offer for days out. At the last committee meeting it was decided to create a private local WhatsApp group for us to arrange things on the fly without having to go through the whole process of contacting everyone to arrange events, The charity can then support you in anything you need to make these events happen with funds etc. 

Below I have created a feedback form for you to give me your suggestion so it can be added to list of things we can do to support you. In addition to this I am keen as your chair for you to contact me within the next week, if you do not feel able to fill out the form just drop me a message any way that suits you and we can speak on the phone, Like I say I have done this with some people already. If no one steps forward then there is a real risk that the charity would have to close but I will try my best to make positive changes to the group but I need your help in doing this. 

Mark Mayer


Having a Family Trust

At the last Family Day I did a short presentation on our experience with setting up a family trust and why.

The main thing I learnt during the discussions that followed was that several members said that they had a “Disabled Persons Trust” and I had not heard of this type. This goes to prove that it is advisable to get professional help if you go down this path.
From a little research I did I think you will find that the “Disabled Persons Trust” is also  known as the ‘trusts for vulnerable beneficiaries’.

I was also asked to put the slides from the presentation on the group’s website so here they are.
Having A Family Trust

Mental Health Articles

A Checklist for Parents with Children with Mental Health Problems

For Teachers: Children’s Mental Health Disorder Fact Sheet for the Classroom

Promoting Mental Health at Home: How to Design the Perfect Meditation Room

Healthy Eating and Depression: How Diet May Help Protect Your Mental Health

5 Ways to Use Feng Shui in Your Home Design

Drug Abuse and Addiction: Recognizing the Signs and Symptoms of Drug Addiction

Anger Management and Addiction: How to Take Charge of Anger Issues in Sobriety

Elderly Mental Health: How to Help Your Senior

Coping with the Loss of a Loved One

Winter Newsletter 2017

Issue 37 – December 2017

From the chairman,  Fab Fundraising, Research and member stories

Download: Issue 37  Christmas 2017, PDF opens in new page.

Further information following the AGM from the Carers Trust

For those of you that could not make this years AGM and get  together Jacqui of the Carers Trust  promised some further information that may be of help to all members so I have repeated it below.


I mentioned in my talk the collaboration we have with the Disabled Children’s Partnership to campaign to improve the rights of parents of disabled children. Below is the information we circulated to our local Network Partners about their current campaign. All your members can sign up by clicking on this link to receive updates and participate in the campaign. There is also further information via our website.


Disabled Children’s partnership

Carers Trust is part of the Disabled Children’s Partnership – a group of charities campaigning for disabled children and their carers. We have plans with our partners to campaign for better services for parent carers and disabled children. The DCP are currently building up their support base, so if you, or any of the carers you support, would like to sign up to receive campaign updates directly from the DCP please do.


Other information including the booklet on relationships can be found on our website under the Help and Advice section. We used to have more information under the holidays section here but this has been reduced due to capacity issues to keep it up to date. However, the MS society have more information about their own respite places but also links to other information about accessible places across the UK that may be helpful for your members.


If you need  to find local carers services, both our Network Partners via our website or via their local authority as they can offer valuable information, advice and practical support for them. If they have any problems finding information, they can contact us via email or via our general phone number 0300 772 9600.

A Date for your diary

The date of the WDSSG gathering and AGM is now set for Saturday 8th July in London (NW1 0PT) full details and a draft agenda will be mailed to you following the next committee meeting in February.

There will be plenty of time for you to speak to other parents and carers, and visit nearby attractions like Regents Park, London Zoo, Madame Tussauds, Sherlock Holmes Museum etc. or further afield have a ride on the EYE or go up the Shard (both of which need booking), a trip on the Thames or take in a show.

Adventure Weekend

Dear WDSSG Members

As you may have read in the latest newsletter we are planning to change the format of the “AGM & Family Day” next year (2017) by dividing it into 2 separate events. An AGM & Get together to share experiences in London and secondly an adventure weekend for the young and young at heart like Mark and John.

We have looked at a number of venues and drawn up a short list on which we would love to hear your opinion.

  1. The Calvert Trust Exmoor

  2. The Bendrigg Trust Cumbria
  3. Hill Top Outdoor Centre Sheringham

At present we are planning to go sometime in September when the weather is likely to be good and the water is at its warmest.

Please have a look and let us know what you think, would you come, which would you prefer to go to, do you know of a better venue? Please send your ideas to the committee at .

Unfortunately the group will not be able to sponsor such a meeting so it will have to be self-financed.


The WDSSG Committee

Christmas Cards

Yes, They Are Back!


By popular demand, WDSSG Christmas cards are back and will be available in the next few days. At the bargain price of £3.00 plus P&P, all moneys made go to support the aims of the group.
Post and Packing is £2.60 for the first pack +30p for each additional pack.


1 Pack   £3           P&P 2.60              Total £5.60

2 Packs £6           P&P 2.60+30       Total £8.90

3 Packs £9           P&P 2.60+60       Total £12.20

4 Packs £12         P&P 2.60+90       Total £15.50



To order please Email Nicki the group’s secretary with your Name, address, how many packs you wish to buy and how you wish to pay. Please copy your order to

You can pay by:-

  • Bank Transfer (BACS); this is the preferred method as it free to you and the group. Please set the Payment reference to Cards and the number of Packs you are buying e.g.  Cards 3 for 3 packs.
  • Cheque; please send to John Butt, 212 Ashcroft Road Ipswich Suffolk IP1 6AF
  • PayPal; send to but you may get charged and we will.

If you have any issues making the payment with this please feel free to contact John Butt the group’s treasurer on


50% off Proloquo2Go, Proloquo4Text and Keeble!

50% off to celebrate AAC Awareness Month

Did you know that each October the international AAC Awareness Month is celebrated around the world to commemorate and build awareness about Augmentative and Alternative Communication?

Because this is a very special month for our community we will be offering a 50% discount on our apps Proloquo2Go®, Proloquo4Text™ and Keeble™.Gateway to Language & Learning©, the core word vocabulary available through an in-app purchase in Proloquo2Go, will also be discounted.

Another reason to celebrate!

We’re excited to announce that during the AAC Month we will be releasingProloquo2Go in French! The French version of our symbol-based communication app will be live on the App Store on October 5.

3 days of discounts

The 50% discount on these products will be in effect from Wednesday October 5, World Cerebral Palsy Day, until Friday October 7.

Discount on high volume purchases

The discount will also apply to Apple’s Volume Purchase Program for Education making this a great opportunity to buy more and save more!

Share the news

Do you know people who could benefit from these apps? Spread the word about this limited-time discount!


We’re here to help. Contact The support team 24/7 at



Family Day and AGM 2016

The Summer 2016 Family day and AGM is being held at

Dunchurch Sports & Village Hall, Dunchurch, Rugby, Warwickshire. VC22 6NP

Date: 9th July 2016

Time: 10am – 4pm

See you There

WDS Committee