Unfortunately there is a lot that I have been doing for the past few months that I can’t blog about. But I have been talking to researchers all over the country, different lysosomal storage disease organizations, as well as trying to reach out to the media. I really only post when it is something that is “nonpolitical” or published.
Today, I had a wonderful conversation with the head of the National Gaucher Foundation for about 45 minutes. They have been so incredibly supportive of our fight against GD23, and they have opened their arms wide open to our families. For the past 10 years or so, there was an agreement that the Children’s Gaucher Research Fund would fund and support GD23 families, and the NGF would fund and support GD1 families. So, to take us in with such passion and care after a decade, it has just been fantastic.
She and I are going to work together to come up with a sensible plan to get a real formalized research plan and structure together. She has some ideas that she is going to work on during the next week, and I have a lot of ideas and contacts to bring into the mix. I really think she and I will work well together. She supports my passion and drive, yet I feel comfortable enough with her because she is not afraid to be honest with me about how things “work” and keeps my feelings in check as to not to get my hopes up.
Our concept is instead of having a few researchers here and there doing their own thing, we are going to attempt to create a huge umbrella with all the Gaucher organizations and other related diseases working together, get a common point where all the research information is kept updated, and work on finding research that could make a difference for kids like Hannah who are here today, still fighting.
Bottom line, our goal is to get work towards finding a treatment for our kids.
With the power and expertise of the National Gaucher Foundation behind us, I really believe we have the chance to get some real research done. Keep your fingers crossed…
Thank you so much for the updates. I know, sometimes, you just need to get things off your chest. It must be frustrating trying to track down the “right person” to help.
Won’t tie you up. Just stopped by to bring you and your family Prayers, Love, Hugs and all the Strength I can give.
Gena’s last blog post..Chocolate Peanut Butter Cream Pie
There is definitely strength in numbers. I am glad to hear that the Gaucher community is *finally* starting to pool resources–thanks to you. Great job! That’s working smarter. 😉
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Was just browsing other posts and wanted to tell you that I can do a fundraiser for you.
Here’s my site, if you want more info, just send me and e-mail:
http://www.serenemoments.scent-team.com
ubrewme@yahoo.com
Gena’s last blog post..Chocolate Peanut Butter Cream Pie
I’m so glad you are finding someone to talk to, who listens and wants to take advantage of your drive and talents.
you go girl!
I love how you let absolutely nothing stand in your way! I’m so proud of your hard work!
Without people such as yourself, these types of organizations wouldn’t get anywhere. Your hard work is paying off, and will continue to do so in the future! Great job!
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