A rare disease a day: Giant Axonal Neuropathy

In honor of rare disease day, I am using my Monday-Friday posts to raise awareness of some of the rare diseases as brief posts. Following on from past installments of “A rare disease a day” Hunter syndrome, Gaucher disease, Tay-Sachs, Morquio syndrom…

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February 21, 2014  |   Share:

Sell Your Junk on eBay to Help HHF!

When my Mom finished packing to return home after Christmas, she dropped the Vera Bradley handbag, pictured above, on my sofa and said, "I'm sick of this purse.  Just throw it away."  Since I've been surfing eBay looking at "vintage" handbags, I knew…

Categories: Hannahs Hope Fund Blog, Blog Whats New | Tags: None

January 4, 2013  |   Share:

Ken and Sean Cook's Hair Raising Way to Raise Funds!

Ken and Sean Cook are growing their hair for Hannah's Hope! Ken & Sean are participating in a "Shave-a-Thon." They will grow their hair, and then shave their heads voluntarily, inspiring friends and family to donate money to support Hannah's Hope…

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December 28, 2012  |   Share:

Nominate HHF for NY Yankees Hope Week

Please nominate Hannah's Hope for the NY Yankees Hope week.  (It takes less than 5 minutes.) Click the "Nominate Now" button on the NY Yankees Hope week page. Here's some useful information to help you complete the form: HHF's city is Rexford. HHF…

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December 20, 2012  |   Share:

How One Family Supports HHF

From an Anonymous HHF Supporter:   The adults in our family have sworn off giving each other stuff we don't need, and instead we donate to Hannah's Hope Fund in each others' honor.  The kids also joined in with true Christmas spirit this year;  whe…

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December 20, 2012  |   Share:

There is hope

A family contacted us this weekend to say their daughter was just diagnosed with GAN. As a Mom, I can't even think about what hearing that news must be like without tears welling in my eyes.

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September 6, 2011  |   Share:

Scientific Update, August 2011

Dr. Steven Gray, from the gene therapy center at UNC at Chapel Hill, is leading Hannah' Hope Fund's gene delivery project. To date, no human has ever received a therapeutic gene to the spinal cord.

Categories: Hannahs Hope Fund Blog | Tags: Gan Gene Delivery, Dr. Steven Gray

August 24, 2011  |   Share:

The Love & Hope Ball and The Business of Making Miracles

Ruth Shopmeyer is the angel who introduced Hannah’s Hope to Doris Buffett who heads the Sunshine Ladies Foundation

Categories: Hannahs Hope Fund Blog | Tags: Love And Hope Ball, Doris Buffett

March 6, 2011  |   Share:

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