Tired of Winter?
Hannah's Hope Fund for GAN March 2014
 
Vacation in Belize for Hannah's Hope
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- Email Auction
- Package Value: $4,700
- Starting bid: $1,500
- 7-night stay
- 3 bedrooms (K,Q,2 Dbl)

Email your online bid to:
Kelly@Hannahshopefund.org 

(Include name, phone and
bid amount)

Deadline to bid: 
March 30, 2014, 11:59 PM


Help us raise funds while
you relax with your friends!

Visit:
www.LasTerrazasResort.com
for more information.


 
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Clinical Trial Update

When Hannah’s Hope Fund was founded, we were told it would take 10 years and $10 million to find a treatment. As you read this, it has been six years since HHF was founded, and you have helped to fund $6 million dollars in research which has lead us to what the scientists working with us believe is a treatment and to the last two regulatory steps before the GAN gene delivery clinical trial can begin.

The first of these final steps is to reformat the manufacturing information into the FDA’s required XML format. It will be added to the FDA documentation, and should go out next week. The FDA has 30 days to respond.

Second, the National Institute of Health (NIH) Institutional Review Board (IRB) will review the protocol next month. It was supposed to have been reviewed this month, but they had too many protocols to review, so it was pushed to their April meeting. I raised the rafters, to no avail. We have been assured it will be reviewed next month. Please pray that it is approved the first round.

The clinical trial will start ASAP with patients who have more forgiving mutation types on the GAN gene (meaning they still have some detectable protein).

As many of you know, Hannah has the less forgiving GAN gene mutation. She has no detectable protein. Hannah, and any other patient with this mutation, must receive an immune tolerance protocol along with gene delivery. This is needed to make certain the immune system doesn't reject the protein being expressed by the GAN gene delivery vector. (A vector is a DNA molecule used as a vehicle to artificially carry foreign genetic material into another cell, where it can be replicated.)

We are initiating a study to determine which gene construct (an artificially constructed gene) delivers the desired dose of an immune response modulator. This study will take 4 months and will conclude at the end of June.

Once we know which construct to use, we will initiate another study to test two immune tolerance protocols. This is a 12 week study that we hope concludes by the end of September.

We are eternally grateful to all of you reading this newsletter. Your generosity has made all of this possible.

With deep appreciation, Lori

 
Edison Country Club Golf Tournament
Friday, April 25, 2014
The Edison Club - Rexford, NY
18 Hole Scramble
12:00 pm shotgun start
BBQ Lunch, silent & live auction, dinner and much more.

 
Click here for more details and to register.
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Hope and Love Ball
The annual Hope and Love ball was attended by more than 375 HHF supporters and raised $155,000!

You can listen to Justin Clark's moving speech here
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THANK YOU to all of the courageous GAN Warriors who braved a
freezing Montana pond to make the plunge to fight GAN.


Read more about the Polar Plunge here.
 
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Thank you to Ken Cook who grew his hair and beard since last fall to once again raise money and awareness for Hannah's Hope through the annual "Shave-A-Thon."  He raised $1,985 for Hannah's Hope! You rock, Ken!
amazon_smile Did you know that you can raise money for Hannah's Hope while you shop on Amazon? Go to Amazon Smile and search for Hannah's Hope Fund. Select it from the list, and HHF will be assigned to your account. That's it! Amazon will donate .5% of almost everything you buy to HHF!

According to the Amazon Smile website and USA Today "There is no cap on the amount Amazon will donate and almost every physical product sold by the company is eligible, which means tens of millions of items... Everything else about the Amazon online shopping experience stays the same, including the shopping cart, wishlists and shipping options. The prices will also be the same."
Upcoming Events

Earlier in this newsletter, there is a link to the speech that Justin Clark gave at the Hannah's Hope Ball.  Justin's twin brother, Jared, is a triathlete who raises money for HHF through sponsorships when he races. (Read more about Justin and Jared in Twins Magazine.)


You can sponsor Jared in his next race, the Kemah Triathalon, April 26-27. Sponsor Jared by visiting the Justin's Triumph website
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Justin, Jared & Lexi
 
JUSTINS_TRI_AND_HHF_COMBINED_LOGO_vertical__3x3 Some of Justin's supporters have formed teams to participate in the Houston Kids Triathalon.

You can sponsor a participant by visiting the Reason2Race Justin's Triumph/Hannah's Hope webpage.  (Scroll to the bottom of the page to see the participants.)  You may also join the team on this page and raise money for GAN while you race.

On April 27th at 2:30 pm, Trio Oriens will perform a benefit concert, Justin's Musical Triumph - a benefit to help silence GAN, at St. Mark's Episcopal Church, 3816 Bellaire Boulevard, Houston, TX 77025.  Admission is free but your tax deductible donations will be gladly accepted.
 
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Texas Hold 'em
 
May 3, 2014
The American Legion, Mohawk Post 1450
Grooms Road, Rexford, NY


The evening will include dinner, cash bar and silent auction.
Please contact Kelly @HannahsHopeFund.org to sponsor the event or to make a donation.
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Alex & Ani Jewelry Sale to Benefit Hannah's Hope

May 6, 2014
6:00 pm - 8:00 pm


Alex & Ani of Saratoga Springs
327 Broadway, Saratoga Springs, NY
15% of Sales will be donated to Hannah's Hope
KofC
Knights of Columbus Pancake Breakfast
St. Edward's Church Social Hall


569 Clifton Park Center Road
April 27, 2014
8:30 am - 1:00 pm


Click here for details.
Thank you to our sponsors!

 
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