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7 Sep 16

National Annual Camp for Young People From HD Families

17-23 APRIL 1998

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REPORT by DOROTHY TORTELL, Social Worker
June 1998
Wellington Huntington's Disease Association

INTRODUCTION

As a result of positive feedback from all those who attended the fourth Camp held in 1997, the Wellington Huntington's Disease Association organized a seven day Camp for young people from families with Huntington's Disease. We welcomed all young people between the ages of 10 - 25 years. For the first time this year, we held a 2 day Camp for those participants who were aged 18 - 25. This took place from late in the afternoon on Friday 17 April to the afternoon of 19 April at Camp Wainui, just over 30 minutes out of Wellington. This group then moved on Sunday afternoon to join the younger campers at the Waikanae Christian Holiday Park one hour north from Wellington. Both sites proved to be excellent venues for the Camp with wonderful facilities meeting all our needs. The management and staff were very generous with their support and help throughout the planning phase and the running of the Camp.

As in previous years, the Camp comprised a mixture of outdoor/indoor activities with several discussion groups. Once again this year we employed, David Clegg of Active Connections to organize all the outdoor activities as well as many of the indoor ones. We were very fortunate to have David's advice, help and support before, during and after the Camp. Anne-Marie Stapp, once again joined us as the Counsellor and planned and facilitated most of the indoor activities. As always, Anne-Marie provided invaluable support and she has become an important mainstay of the camp. Jonathan Hesp, Wendy and Dave Silcock and Mary Gilmour, Chairperson of the Christchurch Association, joined us again this year. Russel Campbell joined us as a helper for the first time this year. Without the wonderful help and support, encouragement and insight of all the facilitators/helpers, this Camp would not have run as smoothly as it did.

CAMP OBJECTIVES

The Camp had the following Objectives -

For young people from families with Huntington's Disease to meet others from similar background circumstances

For the young people to share information and experiences about Huntington's Disease

For the young people to support each other and by doing so, develop a mutual support network

For all the participants to have fun.

The Camp was a great success and all the objectives are considered to have been met. Campers managed to meet other young people in the same situation and learn how they coped; they spent time with other people who understand what they are going through and gained support from people in the "same boat"; they renewed friendships from previous Camps and made new friendships; they overcame feelings of isolation; they shared information and through this, gained new confidence.

CAMP ORGANIZATION

Venue Waikanae Christian Holiday Park

Camp Wainui, Wainuiomata

Camp Organized by Dorothy Tortell
Recreation /Activity Coordinator David Clegg (Active Connections)
Counsellor/Facilitator Ann-Marie Stapp
Camp Helpers Mary Gilmour, Jonathan Hesp, Wendy Silcock, Dave Silcock, Russel Campbell

FUNDING AND COSTS

Financial Support Received

Rotary Club of Greenmeadows, Napier 500.00
Rotary Club of Taradale 500.00
Lions Club of Marton 500.00
Lions Club - Lord Morgan Trust (multi-districts, 202D) 1,000.00
Guardian Trust - W.T. Dobson Settlement (Napier) 1,000.00
Lions Club of Otumoetai, Tauranga 300.00
Otumoetai Licencing (Charitable) Trust, Taurangi 1,250.00
Lottery Grants Board - Lottery Youth 2,000.00
Graham and Jenny Taylor 250.00
Mr and Mrs Delicata 200.00
Blenheim Support Group 250.00
Huntington’s Disease association (ChCh) 2,000.00
MS Society of Nelson 1,200.00
Marjory Heads 100.00
Sutherland Self Help Trust Bd 5,000.00
Total 16,050.50

Camp Costs

Fee for Recreation/Activity Coordinator 4,050.00
Fee for Counsellor 1,200.00
Honoraria for camp helpers 900.00
Waikanae Christian Holiday Park 4,548.35
Camp Wainui 918.00
Transport to and from airport 300.00
Petrol vouchers and mileage 1,029.91
Stationary and sundry for indoor activities 280.66
Horse riding 168.00
Use of Wainui Challenge Ropes course and equipment 462.28
Transport costs for rafting, rock climbing, abseiling etc 45.45
Hire of facilities & equipment for rafting, flying fox, abseiling & rock climbing 875.00
Staffing costs for rafting, flying fox, rock climbing & abseiling 450.00
GST on use of equipment, staffing, transport, venue for rafting etc 329.10
Wellington Carnival Street Band 100.00
Mr Fungus (clown) 281.25
Sundry items 219.08
Extra cakes and drink 59.79
Financial assistance to enable two participants to attend Camp 298.25
Toll calls and cell phone costs 400.00
TOTAL 16,915.12

Social Worker's salary for the 7 days at Camp and time spent in planning, organizing and preparing for the Camp, are not included above

PARTICIPANTS


It was really nice to welcome back the 22 campers who have participated in previous Camps and the 12 campers who were joining the Camp for the first time.
The total number of campers was 34 (21females and 13 males)
10 family groups made up a total of 25 young people
Age range 10-23 years -

10 years: one camper 11 years: two campers 12 years: two campers
13 years: four campers 14 years: four campers 15 years: four campers
16 years: two campers 17 years: two campers 18 years: six campers
19 years: one camper 20 years: one camper 21 years: one camper
22 years: one camper 23 years: three campers

The campers came from 10 towns/cities as follows-

Tauranga: 4 Napier: 4 Palmerston North: 3
Wanganui: 2 Wellington: 8 Nelson: 4
Greymouth: 2 Christchurch: 4 Ashburton: 1
Invercargill: 2

CAMP PROCEDURE

Weekend Camp

Participants started arriving at Camp Wainui early on Friday afternoon, with the last camper arriving late in the evening. Thirteen participants joined us for the weekend, six for the first time. The emphasis was on sharing knowledge on Huntington’s Disease and ways of coping with the stress of the condition, as well as giving the participants the opportunity to improve their leadership skills. The venue was excellent as it enabled the campers to experience the challenge of the flying fox and high and low rope courses. We went off site for horse-trekking and a meal out at a nearby restaurant. As well as the outdoor activities, we held discussion groups on Huntington’s Disease, on stress and ways of managing stress. Participants were encouraged to tell their "stories" and share their experiences with the other campers.
As the theme of this weekend was "Challenge by Choice", all participants were not obliged to attend every activity or discussion group, but we were delighted that most participants did attend all sessions.
This proved a very successful weekend finishing with the emergence of thirteen excellent leaders willing to help with the next part of the Camp.

Main Camp - Sunday to Thursday

On Sunday afternoon we all met at the Waikanae Christian Holiday Park where last years Camp was held.
As is usual with our Camps, the programme included a mixture of indoor and outdoor activities, with the Wellington Carnival Street Band entertaining us on Monday night and Mr Fungus the clown on Tuesday night. The participants had the opportunity to experience a flying fox, rafting, abseiling, rock climbing, and a mud slide. On our last full day at the Camp we had a picnic at the beach as the weather was just so beautiful and hot.

We facilitated many discussion on stress and ways of coping with stress , we told our stories, we talked about and shared our knowledge on Huntington’s Disease, we put down on paper what Huntington’s meant to us, and drew on pillow slips what the Camp meant to us. On the last evening the campers entertained us - a wonderful way to celebrate the finish of our fifth camp and according to everyone the BEST yet! We had a large "birthday" cake with "No 5" written on it, to help us celebrate such an important occasion.
The last morning saw the usual presentation of certificates and affirmation posters, exchanging of addresses and phone numbers, tears and more tears and the usual rush to get away to catch planes and buses.
Towards the end of the Camp, the participants began talking about the possibility of a Camp motto. They came up with one which they will think about during the next twelve months and make a decision on at the camp in 1999.
We are delighted that the participants are taking more interest in, and responsibility for, the planning, organization, and the on-going success of future Camps.
The Camp motto the campers are considering is: We can and we will try

EVALUATION OF THE CAMP

The participants at the Camp were asked to fill in a daily evaluation form at the end of the formal programme each day. Each participant took this process seriously and for this we thank them. Information from the evaluation forms will be used to plan the next camp.

Evaluation of the Weekend Camp for those 18-25 years.

There is no doubt that the weekend Camp for the older participants was very popular and successful. The venue with the rope courses was a great asset and helped cement the trust between the campers. The majority of the participants said that discussions on Huntington’s Disease and other discussion groups were excellent and helpful. There was very positive feedback about the planning sessions for the second part of the Camp. They enjoyed helping plan for the second part of the Camp and looked forward to the leadership role they would play. Most felt that the amount of organized activities was just right, but half of the participants still commented that they would have appreciated more free time. This resulted in some of the participants suggesting that the next Camp for older participants should be longer, possibly by one day.
All the participants said they enjoyed the weekend and that it should take place again next year with the majority agreeing that the age of 18-25 should remain, but several participants felt the age limit should be negotiable.
When asked what they enjoyed most about the Camp they commented that they had enjoyed talking to each other and doing activities together as well as watching people grow closer. They also enjoyed the challenge of the rope course.

Evaluation of the Camp for those 10-25years.

According to the comments made in the evaluation forms, this part of the Camp was also a great success. The participants rated the introductions and activities on the first evening as "Good", many saying how good it was to see everyone again.

The outdoor activities were very popular especially the mudslide, rafting and the evening orienteering activity. Many commented that the day spent at the river taking part in rock climbing, rafting and abseiling could have been offered over several days so they would not have had to rush through many of the activities. The Wellington Carnival Street Band and Mr Fungus the clown were very popular, but the most popular evening entertainment was the concert put on by the campers themselves. Not only did the concert rate highly but they commented on how much they enjoyed the preparation for the concert.

The campers enjoyed writing their stories, painting their pillow slips and receiving their certificates on the last day. The majority of campers found the discussions on Huntington’s excellent and the amount of activities just right, having said that, some commented that they would have liked more free time.

The Camp rules were found to be fair and reasonable and they felt that the age range should continue to be between 10 and 25 years. All campers enjoyed the Camp and felt it should take place again next year, with most of the campers saying that they would attend the next Camp in 1999.

Here are some of the comments made by the participants when asked what they enjoyed the most about the Camp:

talking to people and getting to know them.

I found this Camp was very good because I had never really talked about HD to friends because they didn’t understand.

I have made friends very easily, some very close, we all understand.talking about HD.

meeting others who understand and are going through the same thing.rafting, and abseiling.

The best experience in the world and I hope to be back next year.

The Camp is and should be utmost on the agenda each year..........fantastic fun and learning.

I certainly learnt more about HD and I will always try to learn more.people gelled better this year. There was more love, more support and more people to listen to me.

CONCLUSIONS

The Camp was successful and all the objectives were met.

The young people left the Camp more confident, with an increased knowledge of Huntington's Disease, and with a well established support network which I hope will continue for many years to come.

These Camps must continue to be an annual event.

Outdoor activities for such a Camp are essential and must be continued.

I believe that a Recreation Coordinator such as David should be contracted once again to organize and facilitate the outdoor activities. This position is an important one, contributing to the success, safety, and smooth running of the Camp.

I believe that a facilitator/counsellor such as Ann-Marie should be contracted again to work with the young people. Once again, Ann-Marie's input into the camp was invaluable; the time she spent on preparation for the Camp and her wonderful interaction with the campers and helpers was a major contribution to the camp's success.

The next Camp will be held from 9-11 April 1999 for those 18-25 years old and from 11-15 1999 for those 12-25 years old.

The 1999 Camp will once again be held at the Waikanae Christian Holiday Park.

The Wellington Association should begin fund-raising immediately to ensure that there will be a 1999 Camp

Those wishing to attend the 1999 Camp must be 12 - 25 years old.

ACKNOWLEDGEMENTS

My sincere thanks to all those who helped make this Camp possible - to those who helped us financially, to those who gave us moral support, and to those who gave up their time to help at the Camp.

A very special thanks must go to Ann-Marie Stapp and David Clegg for their dedication.

My thanks also to all the campers who got into the spirit of the Camp right away and who participated fully and sincerely in all the activities. As always, I really enjoyed meeting you all and sharing the few days with you.

Before leaving for home, David Clegg taught us a song which I believe epitomizes what we learnt and what the Camp stands for.

Don’t let anyone ever tell you that you’re anything less than beautiful;
Don’t let anyone ever tell you that you are less than whole;
Don’t let anyone ever tell you, your being is less than a miracle;
How deeply we’re connected soul to soul;
How deeply we’re connected soul to soul.


Dorothy Tortell
Social Worker




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Appreciation and thanks must go to Judy Lyon for compiling the wealth of information available
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