Archives for February 2009

I’m so ready to start coming up with fundraising campaigns to get money for research for Hannah.  Being in the midst of this “economic climate,” it is going to be even harder to raise money. 

Even though I feel better that we are still more likely dealing with a type 3 progress of the disease, the bottom line is it still is going to cause her even more neurological decline over the next few years (including a breathing tube and a tracheotomy), and we may still lose her in the next 10 to 20 years if a treatment isn’t found.

So here presents my dilemma…

1.  My definite first choice would be to work with an already active gaucher’s type 2/3 research group and just raise money for them as the infrastructure is already in place.  But I’m still waiting to hear back from the Children’s Gaucher’s Research Fund to see if they are still active in that area, and if so, what is the latest on what is going on. 

2.  Second choice would be to start our own nonprofit and raise money that we can directly give out to researchers who are working on type 2 and type 3.  Main problem would be the “business” end of setting up the nonprofit, maintaining it, etc.  However, it would give us full control over who gets the grant funding.  Being part of a “business” family, this idea doesn’t scare me at all, I’m just not sure how difficult it would be to seek out the medical support needed for this plus find startup money to get this going.  Also time wise, this would become a full time job for me.

If the CGRF isn’t active in the research department anymore, then I have no choice but to do the startup on our own, as I have yet to find any other group that supports type 2 or type 3 research specifically.  The National Gaucher’s Research Fund doesn’t fund type 2 and type 3 research (I wonder if I could change that — 5% of all Gaucher’s patients have type 2 and type 3, shouldn’t they get at least 5% of the funding?).

What to do, what to do…

I can’t believe it…Hubby and I both forgot about Valentine’s day… no cards, nothing… THAT is a first! 

Oh well, maybe next year…

I didn’t sing much while I was pregnant.  But I did sing one song all the time.  Twinkle, twinkle, little star.

Since Hannah was born, she has always given me some kind of reaction (lately a huge smile) every time I sing that song.  I even sang it to her while she was on her third IV attempt, and it calmed her down a bit.  No other song except one other one (I love you, yes I do, won’t you say you love me too) gets a reaction from her.

So I wonder, did she remember me singing that to her while I was pregnant with her or does something about that song just make her happy?

As many of you know, I’m come to know and deeply care about Addi and Cassi Hempel, as I have talked to their mom on the phone on a number of occasions.  She, as an advocate mom, is what I aspire to be for Hannah.   They have Niemann Pick type C, and their mom is fighting so hard to save her daughter’s lives. 

Take a moment to read her latest post, as it just pisses me off to no end why people aren’t willing to be more compassionate and willing to help a stranger save their child’s life!