As we all know, a good quality wheelchair can hugely improve the quality of life for a person with Duchenne. But these can cost as much as a family car, so the prospect of fundraising to buy one privately might seem a bit daunting. The good news is that you can do it, and probably quicker than you think – I was very lucky last time around and managed to fund a Karma Evo Lectus in three months! Here are some tips that might be helpful if you’re fundraising:
- If you have a younger person to fundraise for, start well in advance of their 18th birthday. Many charities will only support under-18s, so you will have a much wider range of organisations to choose from if you start in good time.
- When you get a quote from the supplier, ask them whether they can suggest any charities to ask. Note down how long the quote is valid for, so you can ask for an extension if you approach the time limit.
- If there are any specialist attachments to the current wheelchair, check whether they will fit the new one! If any other adaptations will be necessary, make sure these are included in the quote because these can add quite a bit to the final cost. In our case, we needed to make sure that Neater arm supports could be transferred from a Balder to an Evo Lectus.
- Get really organised before you start applying to charities! This might seem obvious, but you’re more likely to get funding sooner if you apply to a lot of charities, and I certainly found it easy to lose track. I took a day off work to do all the applications, noting everything down in a spreadsheet, and I was glad I’d set aside time to focus.
- Be prepared to ask for a letter from Wheelchair Services, confirming that available NHS chairs will not suit the person’s needs, and that Wheelchair Services cannot fund the chair they need and will not provide a voucher. Some charities want this before they will consider funding.
- Ask your social worker for advice about local charities that may be able to help – mine suggested Worthing Lions and Hassocks Help, both of which donated towards the chair.
- Keep a master copy of your income and outgoings for means-test forms, you will have to do this over and over again!
- If charities ask, say you’ll be prepared to do publicity – they’ll just ask for a quote or photo, and it’s a nice way of giving something back. We were asked by three or four and it was easy to do.
- Keep in touch with your charities, letting them know how much you have raised and where from. Some of them liaise with one another and come to an agreement when making funding decisions, and others are more prepared to make a grant when you have shown that you are making good progress.
- It goes down really well with funders if you show that you’re prepared to make an effort and give something back. We set up a crowdfunding page with JustGiving and we also pledged to do 40 hours of volunteering while we were fundraising. The volunteering was fun and rewarding – and memorable, especially trying to run a tombola and hold a gazebo down in torrential rain and a howling gale, with people still wanting to buy soggy tickets! Remember that some crowdfunding sites will require a percentage of funds raised. Our supplier, Smart Wheelchairs, very kindly let us off, but you may have to factor this in.
We hope this is useful, and good luck with your fundraising!