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GNEM Patients Share Their Experience Fundraising for NDF

We want to thank the amazing GNEM Community for their efforts in raising funds for NDF. Below are patient stories about their experience fundraising, and why it was important to them to do so. 





Debbie Cameron

"Hello, my dear friends.  

I was asked to write about my birthday fundraiser for NDF.  My name is Debbie Cameron.  

I was diagnosed with HIBM back in 1998. It has been a wild roller-coaster ride ever since, but I have to say I have met the most amazing people along the way.  I had my annual appointment with my neurologist right after the new year, and upon leaving the appointment and getting fastened into my wheelchair, I checked in on Facebook and I noticed the suggestion of a birthday fundraiser. I felt a tug at me.  Here we are, a new year.  I was in the Ultragenyx study and had been involved with it since 2011. So when it terminated last year, it was quite the end of a long journey. I no doubt feel in limbo right now.  What's next for me? I honestly don't know if I would participate in another study if given the opportunity.  But right then and there I felt that tug as if my Creator was saying, Give me something to work with.  Powerful stuff!

Not knowing what to expect - especially right after the holidays - I just went with it and chose the NDF as an organization, that I thought truly had my best interest at heart. I was pleasantly surprised by the response.  Fundraising has never been my thing.  Maybe next time I will be a little more confident in doing it.  Every bit helps.  This birthday idea was just the thing to get the new year rolling.  I hope it will encourage you to step out of your comfort zone, too, in whatever you choose to do this year.

We can't win the lottery without buying a ticket. ;)"

Debbie raised over $600 by donating her birthday to NDF via Facebook. Learn how you can donate your birthday, here

Have you raised funds for NDF? We'd love to thank you and hear about your experience! Please let us know at