Sunday, May 27, 2012

GAN Warriors made the news!

The Ravalli Republic shared the GAN Warriors story! Below is the link to that article.
 The Parents of GAN are doing all they can to save their children. It's up to them to find the cure.
What an inspiration they are of love and courage for their children.
 Thank you Ravalli Republic for helping us spread the awareness of this deadly condition.
More awareness means a faster cure for these boys and time is not a friend of GAN.

Friday, May 25, 2012   

The link above is a very interesting article I wanted to share. I copied this section because it puts a lot in perspective for me. These children JUST want a chance to live, to walk and ride bikes. They JUST want to run and play with their friends, to grow up and have families of their own. I want this for them too and I know if you are taking the time to read this, then you want it for them also.  They are so close with this experiment and it can't come soon enough.
At this point every dollar counts, every prayer counts, every positive thought sent counts.
 Because you care, you are their hope!

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." - Margaret Mead
Help move the 'Mountain of GAN' Please make a Tax Deductible gift today @

Here it the part of the article I copied:


Hannah’s Hope has funded researchers at Emory University, Columbia University, the University of North Carolina and elsewhere to carry out the steps preceding the gene transfer experiment. And results have been so promising that the Food and Drug Administration (FDA) gave a tentative go-ahead this April, pending further toxicity studies in animals. Those are underway now, but cost $646,000 – plunging Hannah’s Hope Fund to the breaking point.
Lori estimates other costs:
- $430,200 for a 2-year natural history study for 12 patients to track the course of this ultra-rare disease, so that the researchers can determine exactly what to check to assess success.
- $220,000 to manufacture the viruses and their human gene cargo
- $600,000 for the phase 1, 2-year trial for 8 children
- $450,000 for a small Phase 2 trial to assess efficacy
That’s a total of $2,346,200. Then, hopefully, a biotech or pharmaceutical company will step in for the required larger phase 3 trials that precede FDA approval.
It sounds like a lot. But for comparison’s sake, $2,346,200 equals:
- approximately 1/30th of Johnny Depp’s fee for his next film
- 1/10th of what Alex Rodriguez earns in a year
- 10 speeches for Bill Clinton
- 6 of Kate Middleton’s wedding dress
- 2 years worth of nanny-time for Brad and Angelina’s brood
- Slightly more than Kim Kardashian’s useless $2 million engagement ring
- .07% of the money spent on the Obama and Romney campaigns as of March 2012.
The government isn’t funding the GAN gene therapy trial. So what the tiny GAN community needs, desperately and now, is a Michael J. Fox, Christopher Reeve, or Julia Roberts.

Tuesday, May 1, 2012

GAN Warriors awareness night!

Our first "GAN Warriors awareness night" was a huge success. The turn out was wonderful and the help was amazing. Thank you, thank you to all of you who came and who helped make this night so much fun. It certainly was a night to remember.
The slide show of the GAN Warriors was shown and a talk was given about GAN and Hannah's Hope Fund.
We also had a cake making challenge and that was incredible. There were two categories to enter, one being TASTE and the other being LOOKS. The day of the event only 20 people had registered to enter the contest, but there ended up being 64 cakes that showed up!
 Prizes for the winners were a  Kindle Fire, Ipod Touch, MP3 Walkman, camera, greenhouse gift certificate,and Bob Wards gift cards. A HUGE thank you to the local businesses that donated these prizes and made this event so exciting. It wouldn't have been possible without you!  
 Woody( from Toy Story) was there to greet the children and give them a balloon. Over two hundred balloons were blown up and by the end of the night almost half were on the gym ceiling.
Levi was so excited to see Woody and even more so when Woody gave him one of his guns to keep.
Just his smiles over that, made this night worth it!