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KZN Chairmans Report 2004
The period under review, 01 April 2003 to 31 March 2004 has been a difficult one, particularly as we, as a branch, have struggled with a lack of manpower. Despite this lack of manpower, as I look back on what has been done, I know that we are providing a worthwhile service within our present constraints. Our manpower has been limited as we lost one committee member and three of our committee members find it hard to attend meetings. Add to this picture the fact that most of us are affected by one or other neuromuscular disorder and one begins to see why our capacity is so limited.
Our mission is first and foremost to provide support to affected people. One of the most visible ways we do this is by providing equipment. We supplied a total of 9 manual wheelchairs. Of these, we purchased 8 and 1 was donated to us by the Frame Group. I am very grateful for the good working relationship that has been established between ourselves and the Neurology Department at Inkosi Albert Luthuli Central Hospital (IALCH) as the doctors there ensure that patients leave hospital with their wheelchairs. In addition to the wheelchairs, we loaned out a mattress and we also assisted one member with modifications to a trailer so that he was able to transport his wheelchair. A further two members were assisted with incontinence aids. Not all requests come from IALCH. The schools for the physically disabled, in particular Open Air School, have also requested assistance when pupils require wheelchairs. In the past year we have had ongoing contact with RP Moodley and Open Air Schools and, more recently, Ethembeni School.
A different avenue of support is the establishment and maintenance of support groups. These have been very difficult to get going. We are happy to use our office admin to provide the infrastructure but we believe that it is important for those who wish to participate in a support group to run the group themselves. We have not had many people coming forward to fulfil this function and this may be for a variety of reasons. One of the reasons given by some members is that they feel that a support group as such can be too ‘intense’ at an emotional level and perhaps the structure of the group needs to be more along the lines of a social get together. As yet we have not had any people coming forward to head up such a group. We are happy to encourage and provide backup and appeal to members to come forward if they are interested in such a group.
One support group that has continued to meet is the Myasthenia Gravis group. They are a wonderful resource for anyone diagnosed with this disorder and we have a good working relationship. We have agreed to assist them with the retyping and printing of their hand book.
As part of the ongoing attempt to draw more people in to the Foundation, as well as the need to update our records, we have been contacting every person on the database. It is hoped that may stimulate people’s interest. In addition to this we believe that our database does not accurately reflect the number of people affected by neuromuscular disorders and so we intend to leave a ‘pack’ with each of the neurologist in private practice for them to hand on to their patients. In the pack will be an introductory letter as well as a copy of the latest magazine and these people will be invited to make contact with us. My thanks go to Frank Gadd for so patiently working through the database.
Other highlights in the past year include:
- A visit by Prof Steve Wilton, Head of the Experimental Molecular Medicine Unit at the University of Western Australia. Steve presented a very informative talk to Duchenne parents on his research and Open Air School provided the venue for the evening. Arising out of Steve’s visit last year, we have received three manual wheelchairs from Australia, together with pressure cushions. Steve and Sandy, his wife, would like to try to set up a regular supply of these chairs to South Africa and we are working on this together with them. Since their visit last year they have been back to South Africa, en route to the US and this time they stopped in Johannesburg and Steve spoke to the Duchenne parents there.
- The HOG (Harley Owners Group)held their national rally in Durban and they donated R50000.00 to us. Again thanks to Frank for getting this project going. The consensus among the Harley people is that this was a very well organised rally and Durban have been asked to make this an annual event. We intend to use this money to begin purchasing electric wheelchairs and with some creative use of this money we anticipate that we will be able to supply 5 electric chairs. One of the spinoffs of the HOG rally was the tremendous amount of publicity we received on radio and in the papers as this helps to create awareness. We are very grateful to HOG for all their efforts as this will certainly make the life of some of our more severely disabled members easier.
Our annual Christmas card sales were a success again this year in that we managed to sell almost all of our stock. My thanks go to those who worked at the kiosks and to Nigel Poole for his efforts in Pietermaritzburg. We will continue to participate in these kiosks as it is another means of creating awareness.
We have continued to participate in the National Committee and my thanks to Frank, Kevin, Pierre and Kumari who have all participated in meetings and given input at various times in the year. We have benefited from the National committee’s efforts to raise awareness of the Foundation and you should all have received a copy of one of the new posters in your copy of the magazine. There are plenty of copies of these posters available so if you would like some to put up in doctors’ rooms or on public notice boards please make contact with the office. I believe that there is a really good working relationship between the Branches as we all see that we have a common goal, although we may take different routes to get there.
Although it has been difficult for us in the Branch I know that it has also been a difficult year for the neuroscience laboratory. Although they have been in their new ‘home’ for some time now there have been many different things to iron out and we hope that things will be smoother for them in the future. One of the difficulties has been the lack of manpower and the committee have agreed that if a suitable candidate – a student - can be found we will assist with remuneration. We will continue to assist with limited funding of certain aspects of work in the laboratory. We have also applied for some funding specifically for the laboratory in our application to Lotto this year.
On financial matters I am very grateful to Abe le Roux for all the work he puts in on our books and on managing our cash resources. Part of this process includes applying for funding wherever he sees an opportunity. Without such careful management we would not have such a healthy financial position.
Another person who is crucial to our operation is Di. Thank you Di for all that you do to make my life easier and for ensuring the work gets done. I would also like to thank Joe, Di’s husband who lets us have our office space rent free. Your contribution means a great deal to us and helps us to balance the books.
In the coming year the challenge must be to continue to reach out to people and draw them into the organisation. My thanks go to all who have served on our committee this year, Frank, Kevin, Shan, who was often unwell, Pam, for representing the Duchenne parents and Lynn for making herself available even though she has been very ill this past year. We have begun to work on this in different ways and we need to continue with these and also look for new opportunities. In this process, hopefully we will find new ‘legs and arms’ to help us. I am glad that Maxine Strydom is keen to get involved and share with our Duchenne parents the knowledge she brought back from the Parent Project. I have also been approached by a former committee member who would like to rejoin in the new year. I look forward to new people with new ideas joining ‘us oldies’ who will take us in new directions while helping us to maintain current services.
Wendy Jones
KZN Chairman
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