Residential weekends Hondarribia Hostel

Residential weekends Hondarribia Hostel
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From the 1st to the 3rd of May 2009

During this weekend a group of PKU and AD have met in the Hondarribia hostel within a residential weekend that the association has schedules for the eighth time.

It is a magnificent place, close to Hondarribia’s port. The hostel is completely renovated and the installations are marvellous. The staff is very friendly and the food more than adequate.

We got there on Friday morning since it was holliday. We had a very warm welcome, while the weather was rather chilly. We handed to every family information and an annonymous satisfaction questionnaire.

At 4 pm we had a meeting in wich we explained to the associates the hostel’s rules and and the weekends program. We also explained how we were managing nthe trips of the Young adults to Torremolinos and the Madrid camp.

We reached for help for the International AECOM congress (we are invited) to be held on October at the Eukaduna Congress Centre.

We hand out to our associates a questionnaire named “Knowledge Evaluation on Phenyketonuria”, requested by hte University of Granada and we ask them to fill out as well the Residential Weekend Evaluation.

Jesús Mari Rey told us about what was spoken with the manager of Cruces Hospital, regarding the substitution of Dr. Montejo.

We agree about organizing aq celebration of the association’s 25th anniversary next year (2010).

While we were having this meeting, the kids were with the monitors making a handycraft for their mothers since it was mother’s day.

On Saturday morning the kids were with the monitors out in the street enjoying a very pleasant sunny day. While they were entertained, the adults had a meeting with Dr. Koldo Aldámiz and Dr. Pablo Sanjurjo. Dr. Baldellou was also going to attend the meeting, but he finally could not come due to health issues.

The lecture began with Dr. Aldamiz and it was about:
– “ La osteoporosis in PKUs”.

He explained us the disease, its causes and consequences.He also talked about researches done with PKUs about the disease and about how it is necessary to consume soja oil in order to increase the levels of omega 3. While these studies are carried out, it seems convenient to begin following them to solve the problem.

After Dr. Aldamiz’s lectura we had a coffe break before Dr. Sanjurjo’s lecture. The lecture was divided into three subjects: “BH4”, “Protein as an amino-acid substitue” and “Treatment with special neutral amino-acids, specially for teenagers and adults”.

Once explained these three subjects, we asked questions to both physicians and they answers all the doubts we had about their lectures. After this round of questions, we closed a meeting inm which we considered very interesting and made us feel rather optimistic.

After lunch, we made a touristic visit. We went to the port of Hondarribia and took a trip in catamaran (firat the kidas, after the adults) through the bay. Meanwhile, the younger ones went fishing with the monitors to the estuary. They really enjoyed the activity, since they had the possibility of looking at what they had fished themselves.

When the catamarán trip came to an end, we went with our Courier to visit the historic town of Hondarribia, which is actually, very beutiful. While we where visiting Hondarribia the catamaran went ot fetch the younger kids for their turn. The experience was unforgettable.

When the catamarán came back with the kids, we enjoyed some spare time before dinner.

The following day, Sunday, the children and teens surprised their mothers with a present they fabricated the previous day with the monitors.After breakfast the adults went in bus to San Juan de Luz, we had two spare hours to visit the city and some took the opportunity to go shopping. The children and kids stayed at the hostel enjoying the fantastic weather taking part in a mini-olimpics game.

We want to say thank you to our Young-adults for helping the monitors to make everything flow smoothly full time except during the meetings with the physicians. They took part in every activity helping the younger ones in their doings. We also want to thank our physicians Dr. Aldámiz and Dr. Sanjurjo for their lectures to the Families, from which we always l,earn something, and Marisa and Begoña for handling the dining room; to the mothers, for their participation in the elaboration of the main courses, and we would not like to forget the staff at the hostel, without their collaboration and efficiency this experience would not have been so marvellous.

QUESTIONNAIRE:

Dates and place for the anual residential weekends of PKU and AD families in the year 2010.
Like previous years, on a long weekend.

Organization of the meeting:

6% scored 6
?8% scored 7 ?
26% scored 8?
28% scored 9
?32% scored 10

Participation and interest shown by the families in the meeting:

4% scored 6?
12% scored 7?
34% scored 8?
42% scored 9?
8% scored 10

Punctuality following the program:

2% scored 5
?4% scored 6?
4% scored 7?
18% scored 8?
40% scored 9
?32% scored 10

Dinning room:
Normal food:
Menu diversity:
4% scored 4
?15% scored 5?
9% scored 6
?21% scored 7?
28% scored 8?
19% scored 9?
4% scored 10

Food quality:
6% scored 4
?10% scored 5
?15% scored 6
?19% scored 7?
27% scored 8
?13% scored 9?
10% scored 10

Special Food:
Menu variety:
6% scored 5
?11% scored 6
?30% scored 7
?32% scored 8
?13% scored 9
?9% scored 10

Food quality:
10% scored 6?
17% scored 7?
31% scored 8?
25% scored 9
?17% scored 10

Lectures:
Dr. Antonio Baldellou:
No scoring for he could not assit to the meeting

Dr. Pablo Sanjurjo:
6%scored 7
?29% scored 8?
33% scored 9
?31% scored 10

Dr. Koldo Aldámiz:
19% scored 7?
33% scored 8
?29% scored 9?
19% scored 10

Group coexistance:
Families:
4% scored 6
?12% scored 7?
36% scored 8?
34% scored 9?
14% scored 10

Young adults:
4% scored 6
?8% scored 7?
20% scored 8
?44% scored 9?
24% scored 10

Children:
4% scored 6
?11% scored 7
?26% scored 8
34% scored 9
?26% scored 10

Activities organized by the monitors:

2% scored 6
?6% scored 7
?44% scored 8?
30% scored 9
?18% scored 10

Cultural visits and trips:
Guided visit to Hondarribia:
2% scored 6
?9% scored 7
?42% scored 8?
27% scored 9
?18% scored 10

Catamaran ride:
2% scored 7?
22% scored 8
?37% scored 9?
39% scored 10

Trip to San Juan de Luz:
2% scored 7
?26% scored 8
?36% scored 9
?36% scored 10

Young adults and children:
Catamaran ride:?
4% scored 6?
11% scored 7?
24% scored 8?
29% scored 9?
31% scored 10

Fishing at the port:?
3% scored 4?
5% scored 5
?8% scored 6?
21% scored 7?
28% scored 8
?15% scored 9?
21% scored 10

Best of the meeting:
Cordiality among the group, the visits and above everything the hostel, very well organized and with very good halls for conferences and activities, coexistance with other families and watch the kids enjoy. Fresh news and novelties brought by the physicians, the union between the Young adults and the monitors to organize the children and kids…

Worst of the meeting:
The weather during the first day and the dinning room’s timetable.

What topics would you like to discuss during the following residential weekends?
Genetic research, new outreaches and maternal PKU.

Personal Comments:
The organization of the meeting was outstanding: the location, conferences, activities and then coexistance. The hostel was very complete and the sights wonderful. These residential weekends must continue for the sake of the patients and their families and the promotion of investigations which should recive more support from the corresponding administrations. It is worth mentioning the positive predisposition of the hostel’s staff and the friendliness of the physicians who atended the meeting.They also mention the lack of interest and assistance of the AD patients and their families.

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