PKU Association of Ireland

• To provide support to parents of children and adults with PKU.
• To promote better care and treatment of people with PKU.
• To provide information on developments in the treatment of PKU worldwide.

We are interested in any one who can help with designing the web site and also and we would be delighted to hear from any one who would be interested in helping building the website. We need articles that we can post on the web site or good links that can be created to other web pages providing information of interest to people with PKU.

In the UK the NSPKU is a charity set up to help and support people with PKU, their families and carers. The NSPKU actively promotes the care and treatment of PKU’s and works closely with medical professionals in the UK. See their web site www.nspku.org This website has useful information leaflets that can be printed and given to teachers and carers of children with PKU. They also hold an annual meeting and people from Ireland are welcome to attend.

The ESPKU association is a European organisation involved in the promotion, education and social welfare of PKU’s and people with allied disorders. The tr to stimulate scientific and medical research and in this regard they hold annual meetings. The annual meetings are held each year in late October and every second year they have large meeting where people with PKU are invited to attend. The Irish PKU association is a member of the ESPKU.

The ESPKU association is celebrating its 20th anniversary at the 21st meeting of the ESPKU in Torremolinos Spain on the 19 20 and 21st October, so why not take the opportunity to take an autumn break in Spain and get to meet other people with PKU and Allied Disorders. To find out more go to their web site where you can view the draft agenda for the meeting and also book a place at www.espku.org

The ESPKU regularly publishes newsletters and these can also be downloaded from the website.

There are also a number of suppliers of PKU foodstuffs from the basic flour, bread and biscuits to the new wider range of foodstuffs available including snack pots, pasta in sauces and hot breakfast cereals to ready cooked meals ready to be frozen and heated in the microwave.

• www.promin-pku.com for pasta, pasta in sauces, hot breakfast cereals.
• www.shsweb.co.uk for wide range of breads, pasta, mixes, biscuits crackers and bars.
• www.glutenfree-foods.co.uk for their PK Foods low protein range of biscuits, pasta, bread, Jelly mixes.
• www.vitaflo.co.uk for the vitabite bars and protein supplement drinks.

We would like to hear for you for your comments on the following:

• Have you had difficulties obtaining the range of foods from either you local pharmacy or from central stores for Dublin residents? If so send us an e-mail to pku@eircom.net
• Are you interested I attending meetings of the PKU support group in Dublin to be held on the second Wednesday of September, November, January, and March and May. Meetings will be held in a central location venue to be arranged? If so please e-mail pku@eircom.net
• Are you interested in fundraising or producing a newsletter please contact pku@eircom.net
• Do you think that the PKU association should employ a full time or part time employee who could work on promoting the goals of the organisation and if so how do you think we could fund a salary? pku@eircom.net