Archives for February 2009

Yep, my husband is starting to get the blogging itch and feels that he wants to share his thoughts on things in our life on his own platform.  I’ll let you know when he starts posting! 

Can anyone think of a creative title for a dad posting a blog?  (He’s at a loss!)

I’m sitting here on my laptop on my bed.  Hannah is sitting next to me propped up between a couple of pillows.  She is totally into this toy.    The really cute thing is that she has put almost every different piece in her mouth to “test it out.”   She’s been at it for almost 10 minutes! 

I SO wish I had my camera upstairs!  She is so into this!

I had a very informative and positive telephone conversation with Greg Macres, founder of the Children’s Gaucher’s Research Fund (read his son Gregory’s story here).   They are definitely still going full-steam ahead with research and funding, even though the website is out of date.   He seemed very enthusiastic with my ideas for fundraising and exposure, and I expressed my very strong interest in raising money for his research. 

Great news — there is almost a Gaucher’s Disease type 2/3 mouse!   Seems like they need about $100,000 more dollars for this mouse, and if it is successful, then there will be a whole avalanche of researchers willing to work for a treatment/cure for GD2/3.   Very, very exciting stuff.  Instead of having to do hypothetical research, they will be able to test lots of different ideas on the mice to see their responses much quicker, which would mean possibly a quicker treatment for Hannah and the other type 2/3 kids.

I feel so much better also because I can now focus my energy on doing what I want to do, which is raise money and awareness, and leave the business and scientific end to Greg and his group. 

Time to start creating awareness and raise funds!!!  Whoo hoo!!

Please help me and Hannah fund this mouse!

I was never the most organized person in the world.  Time management skills are not one of my talents.  I’ll admit I’m still having a lot of trouble organizing myself and what needs to get done.

I have this absolutely HUGE to-do list in my head — all the way from housework to raising money and research for GD and Hannah to getting my writing off the ground to start trying to bring in an income.   I’m almost afraid to write it down because it would be so long.  

With the exception of a very small handful of people who have already been helping, I am pretty much on my own.  I can’t ask my hubby because he is completely overloaded with his job, especially now that it is our sole income and Hannah’s insurance — especially since we definitely see how Hannah’s Gaucher’s Disease is going to cost a fortune.

Maybe I should just post it here as motivation to start getting things done and knocking them out…maybe not, that might scare the heck out of me…