From Carrie Ostrea

An Open Letter to Gaucher Disease type 2 and type 3 families

Hi GD2 and GD3 families,

I need your help.

Like many of you, I am desperate to find a treatment for GD2 and GD3 to save our daughter's life. I've been working nonstop for the past couple of months to get Hannah's story out there, as awareness is so important.

I put out a video for Hannah to create awareness of GD2 and GD3 (http://www.littlemisshannah.com/video) that has been viewed over 3200 times in less than a week. It is working. I received the following email from Dr. Weinreb, a scientific advisory board member for the NGF (and Hannah's guardian angel) who said "It seems as if Hannah is very famous now in the Gaucher world. I just got back from an investigator meeting in Madrid Spain (yes, another meeting!!), mentioned Hannah in some informal conversation and was immediately asked if that was the same beautiful baby girl on you-tube!! " However, my video will only get so attention...there is more to do.

We need to get other GD23 stories out there and make other GD2 and GD3 children "famous". I will help produce the videos. I have a place for you to share your stories (all you have to do is log in and write whatever you want, how often you want). The more children that are introduced with GD2 and GD3, the more we can get real funding for research for this disease. I just need you to want to do it, especially those of you who are still fighting this disease.

I want to produce a second video that shares pictures of other children that are still fighting GD23 and those who we have lost to this disease. People need to see the faces of our children. Please, please send me at least 3 pictures of your child along with their names, ages (current age if still fighting it, age they passed away), and the state or country (if international) to ostreafamily@gmail.com.

For those of you still fighting, there are things that we can do today to help researchers, and I need you to contact me so we can all talk about what is out there, and what we can do together to move things along. I have received some great information from another advocate mom (who has done amazing things for her very rare disease), and I'd like to implement it within our group.

If you are planning to hold a fundraiser for GD2 and GD3 research, please email me and let me know the details! Since the video, I get about 400 to 500 unique visitors a day now and growing quickly (mostly US visitors with a great deal from Europe and Canada). If your fundraiser is open to the public, perhaps one of my visitors can join and participate!

Please, please help me fight. I have so many ideas for fundraising, "out-of-the-box" research possibilities, and awareness ideas, but I can't do it by myself.

Please email me at ostreafamily@gmail.com

Thank you,

Carrie Ostrea

Mom to 3 kids, including Hannah, 7 months old with Gaucher's Disease type 2 or type 3 http://www.littlemisshannah.com