The NSPKU again ran a hugely successful family weekend in Torquay, a beautiful seaside resort in South West England. It attracted visitors from Europe and as far away as Brazil.
As always it brings together parents, patients, carers, families and friends, allowing them to share their experiences and concerns. It also allows them to interact informally with dietitians and other healthcare professionals.
There was also an opportunity to find out what all the suppliers were doing. Nutricia had a big presence, providing low protein cake decorating demonstrations and low protein cookery workshops. There were also stands from Fate Special Foods, Firstplay Dietary Foods Ltd and Vitaflo.
On the Saturday, Dr Anita MacDonald from Birmingham Children’s Hospital gave a presentation on omega 3 fatty acids in PKU. She explained why these acids are so important and highlighted what products provided it.
Dr Sally Craig from the School of Clinical Dentistry Sheffield then described why dental hygiene was so important for children with PKU.
Warner Knight, father of 4 PKU children gave a very interesting talk on the trials and tribulations of travelling the world with PKU children. He provided the audience with some excellent tips and encouraged others to do the same.
Dr Elaine Murphy from Charles Dent Metabolic Unit talked about Kuvan (BH4) and asked the question: Is it a new treatment for PKU? The big issue is the expense of such a new treatment.
“Is PEGylated Phenylalanine Ammonia Lyase the therapy of the future?” This was the big question that was addressed by Dr Christineh Sarkissian from the Department of Human Genetics, McGill University, Montreal, Canada. PAL, which is basically a foreign protein that acts as a surrogate to the deficient PAH, converting Phe to the trans-cinnamic acid and ammonia. There is a great deal of potential here but clinical trials are still in progress.
Michael Wright then presented his life’s experiences with PKU. His key message was “ a normal diet can be led as long as the diet is controlled.
Mona Taylor from Nutricia ran an excellent workshop on cooking with low protein foods. She demonstrated many simple tips on what should and should not be done. She gave every body the opportunity to participate and try new recipes. This was a real hit with parents and children alike.
It is fair to say that every one enjoyed the weekend: they are looking forward to 2010 for the next event in Skipton.
The Festive Fun Weekend for NSPKU families and friends is in Torquay at the Rainbow Hotel. There is still room to book your place on this great value weekend, which includes 3 nights Dinner Bed and Breakfast with PKU menus, a Welcome Drinks Reception, Family Entertainment, Disco, use of swimming pool gym and steam room, free car parking and en suite accommodation in twin, double or family rooms with tea coffee making facilities, flat screen TV. Come and join other PKU families for support and a great fun weekend. Just £75 for adults, and £30 per child for all 3 nights!!
Friday 18th – Monday 21st December… a pre christmas break for all the family.