Blog

/Blog

Out of the Ice Cube Tray, into the Ice – Polar Plunge!

By |February 22nd, 2014|Blog|Comments Off on Out of the Ice Cube Tray, into the Ice – Polar Plunge!

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 syndrome, Fabry disease, Sanfilippo syndrome, Krabbe Disease, Niemann-Pick Disease, Batten disease , Hurler Syndrome, […]

By |February 21st, 2014|Blog|Comments Off on A rare disease a day: Giant Axonal Neuropathy

Adventures of Ruka Bean

By |January 25th, 2014|Blog|Comments Off on Adventures of Ruka Bean

Write the Happy Ending

By |January 20th, 2014|Blog|Comments Off on Write the Happy Ending

Fighter moms – rare disease patient registry collaborations

By |March 25th, 2013|Blog|Comments Off on Fighter moms – rare disease patient registry collaborations

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 that this purse, in a pattern that is no longer made, would […]

By |January 14th, 2013|Blog|Comments Off on Sell Your Junk on eBay to Help HHF!

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’s zipcode is: 12148

You can cut and paste the text below for the “Nominee Description” section:

Three […]

By |December 28th, 2012|Blog|Comments Off on Nominate HHF for NY Yankees Hope Week

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.

To support Ken and Sean, please click here.

By |December 28th, 2012|Blog|Comments Off on Ken and Sean Cook’s Hair Raising Way to Raise Funds!

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;  when their Aunt asked what they wanted from her for Christmas, they asked […]

By |December 20th, 2012|Blog|Comments Off on How One Family Supports HHF

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. Yet, as I communicated with the Aunt of the newest child we add to the group that we are […]

By |September 6th, 2011|Blog|Comments Off on There is hope