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Chocolate Bar Book Featured on ABC World News with Diane Sawyer

To learn more about the story of Dylan and Jonah, and Dylan’s goal of raising $1 Million dollars for Glycogen Storage Disease research, visit Chocolate Bar Book.

Charlotte Jordan, 6, (left) with her sister Alexis Jordan, 10.

Gift of Hope

by Melanie Stawicki Azam

Florida Physician

For Lindsay Jordan, it was a mixed blessing when her daughter Charlotte was diagnosed with glycogen storage disease type 1a.

On one hand, the California mother finally knew why her 3-year-old little girl had been struggling to thrive since birth. At the same time, she faced the sobering reality that Charlotte had a rare genetic disease that could be fatal if not properly treated.

“It was a surreal experience, but I knew she’d been sick,” Jordan said.

Little did she know that Charlotte’s condition would take her to the other side of the U.S. for treatment and inspire her family to donate $1 million to UF to help find a cure for glycogen storage disease type 1a, also known as GSD 1a.

The Fry Foundation, which Lindsay Jordan’s parents, Stephen T. and Cynthia Fry, created, donated the money to establish The Charlotte’s Cure for Type 1a GSD fund. The money will support research geared toward finding a cure for the disease.

“Their gift is the biggest in the history of the program,” said David Weinstein, MD, MMSc, a professor of pediatrics and director of the UF Glycogen Storage Disease Program. “It allows me to focus on some of the programs we’re working on, including gene therapy.”

The UF GSD program is the largest of its kind in the world for care and research for the liver forms of GSD, such as type 1a. It follows more than 425 patients from 37 countries and all U.S. states.

GSD type 1, which affects about one in 100,000 children, impacts the body’s ability to correctly store and use sugar between meals.

After Charlotte was diagnosed with GSD 1a at her local hospital in California, she still struggled from complications related to the disease.

Charlotte met with Weinstein in November 2011 and thrived under his care. Now 6 years old, she visits him annually.

“He could have dedicated himself to anything and for him to pick this little–known disease and try to make a difference for these kids is amazing,” Jordan said.

Photo Credit:  Jordan Family Photo

Voting is once again open.  We were selected out of about 25,000 submissions as a Top 10 Finalist in the Toyota Sponsafier Contest.  AverysHope.org along with CureGSD.org want to spread the word about Glycogen Storage Disease to the NASCAR Nation, and you can help.  Please follow the links below to cast your vote for Avery’s Hope sponsored by CureGSD.  If we are selected as the Grand Prize Winner, Toyota will paint a NASCAR Sprint Cup Race Car in this design scheme and it will be featured at Phoenix International Speedway in the Toyota Pavilion as part of the Kobalt Tools 500 on the weekend of November 13, 2011.  Help us further the cause to find a cure for this disease.  Not only will this provide exposure and awareness to people who have previously not heard of Glycogen Storage Disease, but may open the door to research funding from one of the many sponsors involved with NASCAR.  Please vote once daily from each computer from October 5th -19th and share with as many people as possible.

Visit http://www.sponsafier.com/share/13150 and vote.  Remember, you get one vote per day, from October 5th -19th.

FYI – The page is a little slow to load, so please be patient and share this tip with all that you share with.  Also, you cannot vote from a phone unless your device is flash enabled (the iPhone/iPad are not).

We have entered the Toyota Sponsafier Contest with a CureGSD.org / AverysHope.org design promoting awareness of Glycogen Storage Disease. Thanks to CureGSD.org for their cooperation and support. Please help us find a cure by voting for our design.  You get 1 vote per day for the next 15 days.  Please spread the word quickly as we were delayed in getting approval of the design and we have some catching up to do.  The winning design (hopefully ours) will be spotlighted at a future NASCAR race.  Visit http://www.sponsafier.com/share/13150 and vote.  Remember, you get one vote per day, for the next 15 days.