hi my name is nikki and im from wales in the uk. I am looking for advice on how to fundraise or set up a small charity in memory of my beautiful niece who became an angel in january. she was diagnosed with whs not long after she was born but proved to be a little fighter right from the start.. just like many times before she was rushed into hospital with a febral convulsion due to a high temperature but after 3 weeks on a high dependancy ward she developed pheumonia and we lost her at just 17 months old. Everybody who met her absolutely adored her, she was beautiful with her own cheeky personality and we all feel blessed to have had her in our lives for the short time we did.. now myself and her mum feel we owe to it her to set up a small charity to raise money for the awareness of this syndrome as over the past year we how found many people to come across as ignorant through unawareness including doctors consultants and nurses in our local hospital who had never even heard of wolf hirschhorn syndrome.. If anyone could give us some advice or information on doing this we would be extremely grateful.. many thanks nikki


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2 Responses to can anybody help?

  1. KevinO says:

    Hi Nikki-

    I am sorry to hear of your sad story and it’s great to see that you want to continue providing awareness for the Wolf-Hirschhorn cause. I too, thought about raising money in the past- see my posting here: http://www.wolfhirschhorn.org/2009/07/kendall/the-kendall-foundation/.

    I continue to think about raising money, but the one thing that hasn’t become clear to me is what to do with the money once I raise it! There are places it can be useful, but I don’t want it to go to somewhere where I can’t control how it is spent. I continue to think about ways to create awareness and the only thing that makes sense to me is to give to those families that are directly effected by this rare syndrome. I continue to realize that the absolute best result is to give back to families in need, or to provide developmental aids and toys to those families that are looking for assistance. This seems like the best use of the funds.

    Now, I think your real question is ‘how to raise money for Wolf-Hirschhorn Syndrome’ which is another topic altogether. It requires a solid network of people to communicate with coupled with some creative ideas. I have had a few people reach out to me saying that they would assist in running a bowling event or other types of activities. I have spoken to a local winery and they run charity events all the time. Basically, you drive interest to the event and you get the cost of the event at a discount while selling tickets at a premium. The resulting margin is the fund raising amount. There are so many more ways to do it, but be aware that it is very time consuming and takes a lot of coordinating. Using social networks helps get the message out.

    I hope this helps. I plan on trying to get one event on the calendar this summer. Maybe we could coordinate and exchange ideas on how to make them as successful as possible.

  2. crivera75 says:

    Hi Nikki,

    Thanks for sharing your story with us and I am very sorry for your loss. I feel the same way you do about doctors not knowing anything about this symdrome. I am constantly thinking of how to educate the medical community on this syndrome and how to get someone to do more research on this syndrome. Everything I have learned has come from parents of children with WHS. I know I haven’t answered any of your questions about setting up a charity but I want you to know that you are doing so much by just sharing your story here with us about your niece. You have a lot to teach other parents about the syndrome and I appreciate you reaching out to us through this blog. Thank you!

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