Even though the National Gaucher Foundation‘s focus on awareness and fundraising is for type 1 (the foundation was created by a mom of a type 1 child), they have gone above and way beyond anything I could have ever hoped for in terms of trying to create awareness. I had just asked if they would send my open letter to GD23 families to those famlies on their list that had GD2 or GD3. What I got instead was, for lack of a better word, WOW!
- Put Hannah’s photo and our plea to find other families on their front page
- Running Hannah’s story in their next quarterly newsletter
- AND, sent out a request to all of their media contacts asking them for exposure for our situation!
Seriously, if this works out, this could bring more awareness to Hannah and the other GD2 and GD3 kids than I could do in a year!
So, I sincerely thank you, National Gaucher Foundation!
Hi Carrie.
It’s really nice to see that things are coming together in your efforts.
Your site looks great too!
Harriet’s last blog post..ITS COMMENT RESPONSE MONTH!
awesome! I just saw their website with Hannah right on the front! You may have to get a new pic soon for the button since she is growing so much! Man is she cute.
THAT’S AWESOME!
Alisha’s last blog post..What do you think?
That is wonderful!