Please read the next pages before filling in the application form to join.
We are a group offering support mainly via the internet. Membership is free as is everything that we organise, we try to be free. If you wish to make a donatation then please do although this is purely voluntary - DONATE
None of us are medically trained and so no medical advice will be offered. Any opinions found here should not be taken contrary to medical advice that you have been given. If you are unsure you must always seek medical advice.
We have two groups one for parents of children with motility problems. The second group is for adult who have motility issues. On the application form please mark which group you want to be a member of. Adults can be members of the Parent/Child group if they wish to offer advice. If you are an adult having problems please discuss these in the Adult group only.
Becoming a Member
To become a member please complete the form on the. Sorry that we ask so many questions on the joining form but we feel that it helps us, help you. HMDSN will never disclose any personal information or email addresses to any 3rd party. Any information kept will of been freely given by the members and will only be used to support you.
When you ask to join & that is approved by Gerry or Lisa, you will receive welcoming emails from Yahoo Groups who run our list server. What is a list server? This a way that when you write an email to the group it will go to all of the members but please be reassured only they will receive it. Conversely any emails they post will come to you. You can receive these emails in 3 ways.
- Read On-line:
This is where you go to Yahoo Groups and read the emails you wish to there. This means that the email box on your computer e.g. Outlook or Outlook Express does not receive group emails. This can be useful if you are using a works PC or if you find the emails too numerous.
You will receive, once a day one email containing all of the days postings. This is useful again if you find the number of emails too numerous
- Individual Emails:
This where as soon as an email is posted to the group, it is forwarded onto you. This is the default setup and tends to be the easiest way to read the emails. It also makes it easier to reply to individual problems. All you have to do is to press your reply button.
To ease the problem of identifying these emails you can use 'Filters' or 'Rules' that are available in most email programs. These will allow you to automatically put all group emails into one special email folder. You can do this by creating a rule whereby all emails with either '[HMDSN]' in the subject line or all emails from Hirschsprungs_Support_Network@yahoogroups.com should be sent to a new folder. If you have any problems with this then please contact Gerry or Lisa and we will try to help you.
Benefits of Membership
As a member you have access to the practical knowledge of all of our members currently over 400. These members are based in almost every continent in the world. These are parents of children with on going motility problems, parents of those children who have overcome their problems but want to help others overcome theirs. The last group are adults with motility problems and want to offer their advice.
We will endeavour to publish a quarterly newsletter. These will be free to those who want to receive it via the internet. There will be a small charge for those who want it posted to them.
Meetings are usually arranged by the members themselves as we do not have any full time staff. We as a group, we will do everything possible to support and promote any meeting that members want to arrange. For support please contact either Gerry or Lisa. In the UK we try to have at least one meeting each year. All meeting tend to informal and all are welcome, parents, family members but especially the motility children and their siblings.