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Support groups, families and agencies

Having your child diagnosed with the severe form of nemaline can be a devastating time. Talking to a parent who has been through the same situation can help reassure you and show you that the doctors diagnosis may not be as gloomy as they predict. If you feel like talking to the parent of an NM baby/child, teenager, adult or mother/father who has NM then please contact one of the following people. These families have given their permission to be listed here because they want to help you. Each person has given a few details about their situation for you to decide who might be the best one to talk to.

NM Chat Group
You can subscribe easily to the mailing list. Created on 13 July 1999 as a means for anyone to converse with all listers together. Ask questions and share answers. So far there are 130+ people subscribed. Professionals and parents have shared valuable information for the development of children who are learning to live with this rare and challenging disorder. This is NOT a chat room. You receive/send messages by email. Please contact me directly if you experience any problems joining or leaving the group, and I will make changes manually. Some of our group members can be found here.

To join the chat main group. Send an empty email to: Join me up to the group please
Emails to: Nemaline@yahoogroups.com
To leave the group: I wish to leave the group


NM Support Group
The NMSG was created to raise funds towards NM Convention 2007. It will continue to fundraise for future projects and help families in need of advice and hopefully eventually a little financial assistance.
Emails to: davidmcd_@hotmail.com

Tracheostomy Chat Group
Another useful chat group is:
Tracheostomy_infants@egroups.com
Send a blank email to: Join the tracheostomy infants group

Tracheostomy Awareness Group (Ireland)
This web is mainly for people living in Ireland, but their experiences and information may be of great use.
There is an excellent glossary of the various terms and phrases used in dealing with a trache.

Personal bereavement counselling
Angels4ever.com is a site for those who have lost a baby.
As well as a mailing list (including one for loss in multiple birth) they have some good grieving resources.

Cruse Bereavement Care
(UK) 0808 808 1677
info@crusebereavementcare.org

Professional Counselling Websites
www.bfotoronto.ca

The Sibling Support Project
Sibling Support A useful website for helping you or your children cope with having a disabled brother or sister.
The Sibshop curriculum is used throughout the United States, Canada, Croatia, England, Ireland, Iceland, Japan, New Zealand, Guatemala, Mexico, and Argentina.

Genetic Support in the UK
Patient support

Financial support in the UK
The following links are to websites giving useful information on how to apply for financial assistance. A list of charities can be found here.
www.direct.gov.uk/Audiences/DisabledPeople/fs/en


Muscular Dystrophy websites
Australia
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This page was last updated: March 10, 2008
© David McDougall. 1999-2008
Contact: davidmcd_@hotmail.com