$1 Million
Hannah's Hope Fund for GAN May, 2013
In This Issue: $1M Goal Reached Casey Davies Ketcham Scientific Update Events Volunteers

You did it!

We asked you to match the generosity of Doris Buffett's Sunshine Lady Foundation $450,000 grant by April 30, 2013. You met that goal at the end of February.  Then we asked you to help us get to $1 Million by April 30th, and you blew that goal away as well.  You helped raise over $1 Million in less than 8 months!

There are no words to express the deep gratitude we, as parents, family and friends of children with GAN, feel toward the limitless generosity we've experienced from HHF supporters.

Since we don't have words, we asked those who did to express themselves:

GAN Warriors Thank you_edited-1 

 
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The Tkalec family (Ethan's family) would like to sincerely thank all the people who gave to HHF because they believe in hope, and in turn give us hope!
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Sadly, we lost one of our GAN family
 
On March 26th, we lost precious Casey Davies Ketcham. Casey would have turned 22 this July.  She is the first person to pass since GAN entered our world exactly 5 years ago this week. Lori Sames wrote after hearing the news:

Since the age of 12, after the passing of her father, Casey was solely cared for by her mother, Jody.  Both Jody and Casey share, as Jody's family puts it, "a silly happy gene." Despite much tragedy, nothing seems to ever squelch their spirits.
Jody and I first met about 4 years ago at a diner mid-way between our homes in NY and NJ.  I was struck by her optimism and bright spirit.  She shared tid-bits about Casey and her vibrant spirit. Casey once told Jody that if it weren't for her disease, she would not have had the opportunity to attend her school she loved, and would not have met a special person that was a part of her life. I truly feel she had the best attitude imaginable.
 
At our first meeting, Jody also told me to not fear the wheelchair. She and her husband took Casey all over Europe a few times with the wheelchair.  Jody shared that she, "loved that Casey was totally dependent on her."  It wasn't a burden to Jody, but a privilege that they shared a bond most people will never experience.
 
Today, I feel very angry, sad, agitated ...  Angry we were all given GAN...  Angry this has taken so long to bring to a Phase 1 trial... 
 
A fire started burning deep in my core EXACTLY 5 years ago when Hannah was diagnosed.  We will not rest until we have a successful treatment for our kids.  They are rare, but they are no longer neglected.
 
Rest in peace Casey.  With God's continued grace we will conquer GAN.  We will feel your strength and peace when our kids receive gene delivery.  You wanted to be the first, and you will be there in your vibrant spirit.
 
Lori


Our entire HHF community is deeply saddenned by this loss.  We are heartened by the memory of Casey's spirit, and she will always have a place in our hearts. Our deepest sympathy to Jody and her entire family.

You may read Casey's obituary by clicking here.  


GAN Gene Scientific Update
A team of international researchers led by Northwestern Medicine scientists has identified how a defective protein plays a central role in a rare, lethal childhood disease known as Giant Axonal Neuropathy, or GAN. The finding is reported in the May 2013 Journal of Clinical Investigation. 



golf ball  Heroes for Hope Edison Country Club Golf Tournament

Wow!  $38,000 net!!!!! GREAT JOB, golf committee, The Edison Club, Mark Jorgensen, Craig McLean, sponsors, supporters, friends and especially Mr. Paul Liguori for volunteering to Chair this massive undertaking.

Thank you to everyone!

Matt Sames

Visit our Americade Booth June 1 - 8

Click the picture below to visit the Lake George Americade page.
To volunteer, please contact Kelly.
(Her contact information is to the right.)

Pre-Order Your Hannah's Hope Americade T-Shirt

T-Shirts are $25 which includes shipping.

Available sizes are adult M, L, XL and XXL.  

To order, call Kelly at 518-742-0848 or email at 
kelly@hannahshopefund.org
 
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Photo taken at Vacation Bible School 2012, Hannah Sames (left), Karen Reilly (right)
Volunteer Spotlight

Hannah’s Hope Fund has made incredible strides to find a cure for Giant Axonal Neuropathy but none of our accomplishments could have been possible without the hard work and dedication of our volunteers.

In this issue we honor Karen Reilly of Bethel, N.Y. as Hannah’s volunteer of the month. Both a wife and mother, she has dedicated her time to being a stay at home mom to 6 year old, Will and 4 ½ year old, Megan. Beyond her motherly role, she has leapt at every opportunity to help Hannah’s Hope Fund, specifically with social media.
After meeting Hannah during Vacation Bible School in 2011, Reilly took it upon herself to research about G.A.N and started following Hannah’s Hope Fund through their Facebook page.

“I was struck by the fact that her condition is fatal and was moved by the grace and determination of her parents in founding the organization and their commitment to find a cure for G.A.N,” said Reilly. “Ideas fluttered through my mind of ways to increase social media presence, until one day I decided to pick up the phone and call Kelly.” (Kelly Obermayer, Director of Development for HHF)
 
Since signing on as a volunteer for Hannah’s Hope Fund, her main focus has been to spread awareness of the non-profit organization through any medium of communication she can find.
 
“I find ways to increase Facebook followers, research funding opportunities, find ways to partner with other organizations, and increase Hannah’s Hope Fund's coverage in the media,” said Reilly.
 
The number of volunteer hours completed by Reilly is boundless but her dedication and perseverance has paved the way for her children to be mindful and caring of others as well.
 
“Being involved in Hannah’s Hope Fund has provided endless opportunities to help teach my kids about compassion and character,” said Reilly. “When my son was five, he emptied his piggy bank and donated its entirety to Hannah’s Hope.“
 
On behalf of the whole Hannah’s Hope Fund team, we applaud you, Karen Reilly. Thank you could never be said enough times to express our gratitude for all of the work you do. 
 
Kelly Obermayer, HHF’s Director of Development, is always in need of volunteer help.  If you are interested in volunteering, please contact Kelly at 518-742-0848 or kelly@hannahshopefund.org.  Kelly will be glad to coordinate with you so you can volunteer as much or as little as your schedule allows.
 
By: Jordan Leah Bradley

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