Jefferson Awards speech, June 15th, 2008
in Washington D.C.
thumbnail for larger view.
a bright spring morning when she was 7 months old I walked
into my daughter’s bedroom and experienced every mother’s
baby was whimpering, she was covered in blood from head
to toe, her arms, legs, chest, diaper, and sheets were
all saturated in blood. Her hair was matted with blood,
her eyelids were sealed shut with dried blood, even her
mouth was filled with blood. It was a scene from a nightmare
or a horror movie; something straight out of a Stephen
King novel, only this was real…"
the rest of the Jefferson Award speech)
Facing Rare Disease Unite
Diseases Are Rarely Researched
"There's not a lot of research being done. It's terrible
to tell them nobody is doing anything," said Mary
Dunkle, vice president of communications at NORD.
there is lilttle research into these diseases, most of
them do not have a drug that is approved specifically
to treat them.
Putkowski and Dunkle said there has been a small bit of
hope. In 2008, the National Institutes of Health opened
an undiagnosed diseases program.
get about 20 different physicians together representing
a variety of medical specialty areas," said Dunkle.
"As a team they try to figure out what's going on
with the patient." (Read
IN THE HOUSE OF REPRESENTATIVES
Broun of Georgia (for himself, Mr. Burgess, Mr. Boustany,
Mr. Price of Georgia, Mr. Paul, Mr. Westmoreland, Mr.
Snyder, Mr. Linder, Mr. Gingrey, Mrs. Christensen, Mr.
Deal of Georgia, and Mr. Kagen) submitted the following
White House Visit
9-year-old Evans girl with a rare blood disorder had a
dream fulfilled recently when the Make a Wish Foundation
granted her the chance to meet President Bush and tour
the White House.
Smith says she wants to be president one day and her greatest
wish was to meet the commander-in-chief and visit 1600
meeting with Bush
A wish come true
By J. Scott Trubey Staff Writer
A 9-year-old Evans girl with a rare
blood disorder had a dream fulfilled recently when the
Make a Wish Foundation granted her the chance to meet
President Bush and tour the White House.
Mrs. Smith goes to Washington Lucy Adams Columnist
doubt, the gentleman wondered what Mrs. Smith was doing
in the private, men's lavatory in the White House China
Room. No doubt, her unexpected intrusion made him very,
very uncomfortable. No doubt, he suspected espionage,
terrorism, or, worse, that she wanted to use the stall
he currently occupied. (Read More)
TV 26 Interview with Helen Smith about upcoming 'Make-A-Wish'
been asked to write a brief description of what it is
like being the mother of a child with Glanzmann's Thrombasthenia.
I don't know if it's possible to be brief but I will
attempt it. I have 3 children; my oldest daughter is
11, my son is 4. Julia is the baby; she's 3. Julia was
born with a rare bleeding disorder called Glanzmann's
starts nonprofit to fight disease By Charmain Z. Brackett Correspondent
Smith never thought she'd champion a cause until her
daughter, Julia, was born. (Read More)
hopes her efforts lead to
cure for disorder By Charmain Z. Brackett | Correspondent
Wednesday, February 1, 2006
7, has a rare blood disorder called Glanzmann's thrombasthenia.
Mrs. Smith, through the Glanzmann's Research Foundation,
a nonprofit organization she founded, helps raise money
for research to find a cure. (Read
County Girl Meets President!
Published: Sep 18, 2007 at 9:55 AM EDT
like any other third grader, Julia Smith spends part
of the afternoon in the kitchen finishing her homework.
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No treatment of GT should be undertaken without medical
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