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The charity |
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The Past
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When I was diagnosed my phone call to Ataxia UK, the charity for people with ataxia, was crucial to me' It was the very start of me accepting Ataxia. The rest of my life would be altered in a way that I had not imagined. The allegiance I now have for the workings of Ataxia UK, makes up a large part of my life. When I was first diagnosed I felt like I was the only person with Ataxia, on the planet. I know that nearly all fellow sufferers felt the same way. The most important role the charity can play is that they can put you in touch with other people living with Ataxia. Becoming a member brings many advantages, not least, that you can phone the office when you are feeling down and want a chat. The charity can put you in touch with other members to enable you to make friends and share experiences. I have been a charity trustee since 2002. I go to the office 5 times a year for National Committee meetings where I represent the point of view of people with Ataxia. The board works in the interests of people with Ataxia but unfortunately, because of the nature of onset, the board comprises of mainly non-sufferers. Since diagnosis I have decided that I am going to do what I can, while I can, for other people with Ataxia. I also know that someday I will find it too much of a struggle to get to charity meetings. I have heard it said that " the further away from the office a member lives, the less support they feel. I want to say that in the past year, the charity has improved. In my opinion it is more professional and more efficient. We have some good people running the charity and as members we all need to support it. We all need to do what we can to promote the efforts we all make, to make this charity continue to grow in strength. |
I want skip trying to tell you just how good the charity is and concentrate on the current changes within the charity. In the past conferences have taken place at different hotels, around the country in September. The conference included an AGM. For the first time, this year, there are 3 conferences planned at different suitable venues, in different regions in an effort to encourage more members to attend a conference without the added burden of a long journey. It is hoped that more people will attend because the need to stay overnight maybe required to a lesser extent. Nobody likes change. I hope that members who have been to conferences for years are not put off by these changes. The constant balancing act that all charities perform is spending some money to raise more money. It must be remembered that the cost of having conferences in past years was very expensive. This was a huge drain of charity funds and alot of work for the charities office. This year is a trial to see how many attend and how much it costs. Lets wait and see.
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