|
NEWS
(Updated 05-07-08)
Shelly Morton (Community Resource Manager at
Bridgestone/Firestone) presents a check for “Camp
Freedom”
 Beyond
the Call for Community
On April 4, 2006
14 year old Trey Climer, who has severe Factor
IX, was awarded the Jefferson Award for
community service as an Outstanding Youth. One
of his community service projects was repairing
over 40 broken tombstones (150+ years old) and
cleaning all the tombstones in the Denmark
Presbyterian Cemetery, which is designated as a
National Historical Landmark.
Trey learned
how to repair monuments from a mortuary
company. He then recruited and trained 26 others
to assist in the project. Trey worked to get the
materials donated and personally logged in 219
hours of work to accomplish his task.
This project
also earned him the Eagle Scout Award from the
Boy Scouts of America. Eagle is the highest rank
in Boy Scouts and is earned by less than 4% of
all scouts in the USA.
The Jackson Sun
donates $1,000 to the winner’s organization of
choice. Trey chose the Tennessee Hemophilia and
Bleeding Disorders Camp Freedom to receive this
donation.
U.S. FDA grants approval to Gilead's once-daily
HIV medications Truvada and Viread
[Vaccine Weekly]
Release Date: 4/5/2006
Vaccine Weekly via NewsEdge
Corporation :
2006 APR 5 - (NewsRx.com) -- Gilead
Sciences, Inc. (GILD) announced that the U.S. Food
and Drug Administration (FDA) has granted
traditional approval to its once-daily
antiretroviral Viread (tenofovir disoproxil
fumarate) and its fixed-dose product Truvada (emtricitabine
and tenofovir disoproxil fumarate), which combines
the company's two antiretrovirals Emtriva (emtricitabine)
and Viread in one daily tablet.
Traditional approval status was
granted following FDA review of 48-week data from
Study 934, the second confirmatory pivotal study
for Viread. The FDA previously granted accelerated
approval for Viread and Truvada in October 2001
and August 2004, respectively.
As part of traditional approval,
the U.S. prescribing information for Viread and
Truvada now include 48-week data from Study 934, a
phase 3 open-label trial comparing a once-daily
regimen of Viread, Emtriva and efavirenz to
twice-daily Combivir (lamivudine/zidovudine) and
once-daily efavirenz in treatment-naive patients.
Eighty-four percent of patients in the Viread/Emtriva
group compared to 73% of patients in the Combivir
group achieved and maintained HIV RNA less than
400 copies/mL through week 48. This difference
largely results from the higher number of
discontinuations in the Combivir group due to
adverse events (9% versus 4% in the Viread/Emtriva
group) and other reasons including lost to
follow-up, patient withdrawal, noncompliance and
protocol violation (14% versus 10% in the Viread/Emtriva
group).
In addition, 80 and 70% of patients
in the Viread/Emtriva group and the Combivir
group, respectively, achieved and maintained HIV
RNA less than 50 copies/mL. The mean increase in
CD4 cell count was 190 cells/mm3 in the Viread/Emtriva
group and 158 cells/mm(3) in the Combivir group.
The 48-week data in the label reflect those which
were published in the New England Journal of
Medicine.
Guidelines issued by the U.S.
Department of Health and Human Services (DHHS)
list emtricitabine and tenofovir disoproxil
fumarate as preferred agents for use as part of a
non-nucleoside reverse transcriptase inhibitor (NNRTI)-based
regimen in appropriate patients who have never
taken anti-HIV medicines before.
Gilead and Bristol-Myers Squibb
have established a U.S. joint venture to produce a
once-daily fixed-dose product containing Truvada
and efavirenz and expect to file a new drug
application with the FDA in the second quarter of
this year.
Today, CDC estimates that more than
one million Americans are infected with HIV, the
virus that causes AIDS. Of these, approximately
25% are unaware of their infection. Although HIV
treatment options have expanded rapidly in recent
years, CDC estimates that 216,000 Americans who
are HIV infected and eligible for antiretroviral
treatment are currently not receiving it.
Gilead Sciences is headquartered in
Foster City, California, and has operations in
North America, Europe and Australia.
This article was prepared by
Vaccine Weekly editors from staff and other
reports. Copyright 2006, Vaccine Weekly via
NewsRx.com.
The
Buzz is Back!
In its inaugural year, Camp SuperFly offered
chapters around the country a chance to win grant
dollars for summer camps through a series of cool
challenges, fun activities, and checkups at HTCs.
By the time the competitors reached the finish
line, players learned more about hemophilia and
chapters earned more than $70,000 to help make
their camps even more super.
Now the wait is over. Camp SuperFly II takes
flight in April and play soars through the end of
June. And this year, it’s even bigger and better.
Teams will compete in one of three divisions based
on team size, so crowning the top three winners in
each division means there will be TRIPLE the
number of prizes compared to the inaugural year.
Camp SuperFly II also offers all-new challenges
customized for kids, teens, and adults. It’s easy
to participate, fun to play, and there are even
more ways to win money for your chapter.
Be on the lookout for more information about how
to sign up soon. For more information, contact
Cathy Baggett (888) 703-3269 email
cathy@thbdf.org.
First Annual Sporting Clay Tournament
On September 17th
2005 the foundation held its first Sporting Clays
Tournament. The event was held at the Tennessee
Clay Target Complex in Nashville. We had 40
shooters participate and the event raised over
$6,000! Bill Marquez was the winner of the
drawing for a Remington 870 shotgun (and
accessories) valued at over $850. The Class “A”
winning team was: Dale Davis, Jim Sparks, Todd
Titegens, Trip Wheeler, and Mitchell Sutton. The
Class “B” winning team was: Steve Patterson,
Howard Tignor, Howard Tignor Jr., Janetta Tignor,
and David Tignor. Congratulations everyone! We
would like to thank our sponsors: Event
Sponsors-Baxter & Hemophilia Health Services,
Field Sponsor-Care For Life, and Lunch
Sponsor-Baxter. These companies/people donated
prizes for the event, we really appreciate their
support: McDonald’s, Smyrna Pawn & Gun, Hunts
Outdoors, Gamaliel Shooting Supply, Brian Bellamy,
Wal-Mart of Gallatin, Cabela’s, Academy Sports &
Outdoors, Bumpus Harley Davidson, Murfreesboro
Outdoors, & Remington. We want to thank our
committee members for all their hard work: David
Tignor (chair), Brian Bellamy, Stephen Lawrence,
Stan Singley, and Bill Marquez. We are already
planning for next year, a date will be forth
coming, be sure to mark your calendars!
 
 
Back
to Top
Dart
Tournament for Camp Freedom
By Dawn Ihle
The Benefit Dart Tournament was held at Shade Tree
Lounge on June 4, 2005. We had several people
playing in the tournament and many others cheering
them on. I had enough items donated for everybody
there to receive something for helping us raise
$1,200.00 for Camp Freedom. We had these larger
items that we sold chances on like a loveseat from
Bauhaus USA Furniture Company, a computer from
Innovations Company, Ladies Brighton Wallet from
Alexis’ Boutique, Practice Golf Club from Golf 1st,
and a couple’s night which included a night at
Comfort Inn, Chocolate covered strawberries from
Margaret’s Chocolates, $15.00 Gift Certificate
from Sunny Cros Flowers, 2 free pasta meals from
Vanelli’s Restaurant, manicure for her, haircut
for him, and a couple’s basket from Carol’s Cards
which had pink champagne, glasses, coasters,
cards, candy, t-shirt, and many other items. We
also had many other items donated that we sold
tickets for, like stadium chairs, umbrellas,
picnic sets, coin sets, decorated mirrors, darts,
t-shirts, restaurant gift certificates, hair cuts,
manicures, duffle bags, insulated mugs, hats, and
many other items. We even had a plaque for the
first place winners donated by Tupelo Trophy &
gifts. We will have their names engraved and hung
at Shade Tree so we can add to that plaque each
year. We are going to make this an annual event in
June every year and hope we continue to have this
type of success.
Here is a list of the items, sponsors, and value
as close as possible.
Vanelli’s Restaurant
– 2 pasta meals - $60.00
Carol’s Cards
– couple’s basket - $150.00
Tupelo Trophy & Gifts
– plaque - $12.50
SprintPrint
– 2 Golf Shirts - $30.00
Union Planters Bank
– picnic set - $30.00
ProGolf of Tupelo
– Ole Miss & MS State hats - $40.00
The Billard Gallery, LLC
– 2 collector sets of darts, tungsten set of
darts, 2 collector sets of flights - $130.00
Renasant Bank-
2 coin sets, 2 hats, pencils, balloons for camp,
pens - $150.00
Bancorp South
– 2 golf umbrellas - $50.00
First American National Bank-
folding chair in bag - $25.00
US Marines-
5 t-shirts-$60.00,10 lanyards-$30.00,4 stress
balls- $14.00,
3 plastic mugs- $15.00, 2 key chains- $6.50, 5 ink
pens - $10.00, 5 music cd holders- $50.00, 50
pencils - $5.00
US Army-
5 lanyards - $15.00,
US Navy
–
Cellular South
– 50 cups-$100.00, 50 pens - $50.00, 50 huggies -
$50.00, 25 note pads - $25.00, 100 bag clips -
$50.00
Barber printing
– 100 notepads $125.00
Bill Williams Sporting Goods
– Ole Miss mouse pad - $8.99,
MS State mouse pad - $8.99
Back
to Top
THBDF Does “The
Five”
In
order to prevent bleeds and reduce bleeding
complications associated with Hemophilia, NHF’s
National Prevention Program offered the State
Foundations a grant to initiate innovative
programs to teach our youth about Do The Five.
THBDF submitted a proposal to NHF to teach Do the
Five through a youth-led program to be taught at
our Annual Meeting and Camp Freedom.
On
Saturday, May 14, 2005 five adult facilitators and
seven youth counselors met to come up with this
youth-led program. The youth counselors were
asked to make this program their own. They did
this by coming up with their own program name –
AVEET. AVEET
is an analogy of the prevention techniques and our
counselors though this would help children
remember the techniques easily.
Due
to the different age ranges that would be present
at both Annual Meeting and Camp Freedom, teaching
strategies had to be developed for different age
groups. The counselors decided to incorporated
the principals of Do The Five into games to help
the children retain the information. Ages 11 and
under would be taught AVEET though a Red Light,
Green Light game. Ages 11 and up would
participate in a scavenger hunt of AVEET puzzle
pieces. A Pre and Post test were also utilized to
determine knowledge before and after the games.
The
first opportunity the youth counselors had to
teach the program was at Annual Meeting. All the
children were given a pre-test. Those that could
not read were assisted by an AVEET counselor.
After the pre-test the counselors reviewed Do The
Five and explained why the five prevention steps
were important and put it into aspects the
children could understand. For instance, they
showed the knees of older hemophiliac counselors
to demonstrate why to treat bleeds early and
adequately. They defined the terms enabling them
to understand. After this, they initiated the
games, which were a big hit.
After the games the children were asked if anyone
did not understand and those children were
provided one on one time to answer any questions.
The post test was then given and the results were
amazing. All the children demonstrated retention
of the Do The Five prevention techniques and they
could also verbalize why they needed to do them.
This
program was also a learning tool for the seven
youth counselors. It made them understand the
disease process of individuals with bleeding
disorders and the importance of prevention. All
of the youth counselors have a bleeding disorder
or are affected by a bleeding disorder.
Our
hopes are to continue this program and to continue
to teach children and their parents about the five
steps to preventing increased disabilities within
the community.
If you would like further
information on this program or if you have a group
of youths who want to get involved, please contact
Cathy Baggett 888-703-3269.
Back
to Top
New genetic engineering techniques are likely to
cure hemophilia patients.
"In the last three decades, hemophilia has moved
from the status of a neglected and often fatal
hereditary disorder to that of a fully defined
group of molecular-pathological entities for which
safe and effective treatment is available.
Hemophilia is likely to be the first widespread
severe genetic condition to be cured by gene
therapy in the third millennium," according to
recent research from Italy.
"In the socio-economic arena it remains a
challenge to humanity to know that four-fifths of
the world's hemophiliacs still receive no
treatment at all," noted P.M. Mannucci, IRCCS
Maggiore Hospital.
"Production of factor (F) VIII and IX in the milk
of transgenic farmyard animals could provide a
source of less expensive replacement therapy for
developing countries. Affordable gene transfer
will be the ultimate solution for hemophilia in
the third world as in the first. Thus it may be
confidently predicted that the early new
millennium will see an end to this ancient
scourge," P.M. Mannucci said.
P.M. Mannucci published the study in Journal of
Thrombosis and Haemostasis (Hemophilia: Treatment
options in the twenty-first century. J Thromb
Haemost, 2003;1(7):1349-1355).
For additional information, contact P.M. Mannucci,
Via Pace 9, I-20122 Milan, Italy.
Publisher contact information for the Journal of
Thrombosis and Haemostasis is: Blackwell Publ
Ltd., 108 Cowley Rd., Oxford OX4 1JF, Oxon, UK.
This article was prepared by Hematology Week
editors from staff and other reports.
Domm and colleagues published the results of their
study in Haemophilia (Complications of central
venous access devices in paediatric haemophilia
patients. Haemophilia, 2003;9(1):50-56).
The corresponding author for this report is R.L.
Janco, Vanderbilt University, Med Center, Division
Pediatrics Hematology & Oncology, Vanderbilt
Hemostasis Thrombosis Clinical, 390 Preston
Research Bldg, 2220 Pierce Avenue, Nashville, TN
37232, USA.
To subscribe to the journal Hemophilia, contact
the publisher: Blackwell Publishing Ltd., 9600
Garsington Rd., Oxford OX4 2DG, Oxon, UK.
The information in this article comes under the
major subject areas of Angiology, Cardiology,
Hematology, Immunology and Risk Factor.
This article was prepared by Hematology Week
editors from staff and other reports.
Back
to Top
New technology uses yeast to produce proteins;
process could create drugs for Hemophilia
Scientists working in the U.S. recently said they
had figured out how to use yeast to make vital human
proteins. The scientists hope the technology can be
put to work producing human proteins in large
quantities and make it possible to use as drugs
proteins that now cannot be mass-produced, including
factors to treat hemophilia, along with proteins
used to boost the blood cells of cancer patients,
multiple sclerosis drugs, and others.
Some human proteins, such as insulin, can be made
cheaply now using bacteria. The bacteria are simply
genetically engineered to make the protein. However,
this process only works with some proteins. Many,
including factor, have to be made using batches of
cells from mammals. This process is expensive,
difficult to maintain, and potentially carries the
threat of transferring animal retroviruses to the
human protein. In addition, these processes take
considerable time to produce a protein, where yeast
takes three to four days, sources said.
Back to Top
More than a million American women risk serious
complications from undiagnosed bleeding disorders
More than a million women nationwide have a genetic
bleeding disorder but don’t know it. Without
treatment, they risk serious bleeding complications
following childbirth, surgery, and injury. To help
these women get properly diagnosed and treated, the
Tennessee Hemophilia & Bleeding Disorders Foundation
is taking part in Project Red Flag, a national
public awareness campaign to help women recognize
bleeding disorder symptoms, such as heavy periods,
bleeding after surgery, nosebleeds, bleeding gums,
and easy bruising.
Bleeding disorders are rarely considered as the
cause of heavy periods, despite studies that show
15-20% of women with heavy periods have a bleeding
disorder. Additionally, each year some 28,000 women
have a hysterectomy because of severe bleeding.
Since women with bleeding disorders risk having such
procedures, as well as dangerous internal bleeding
after injury or surgery, it is critical that these
women receive a proper diagnosis and appropriate
care.
As many as 2 people out of 100 have von Willebrand
disease (vWD) making it more common than any other
bleeding disorder, including hemophilia. Symptoms of
vWD include easy bruising, frequent nosebleeds, and
prolonged bleeding from dental work and surgery.
There are other symptoms uniquely affecting women’s
health, including post-partum hemorrhaging and heavy
periods.
Because vWD is inherited and runs in families, it is
frequently undetected since women often have other
family members with the same symptoms and may view
them as normal. Although there is currently no cure
for vWD, it can be treated effectively with
medication if properly diagnosed.
Women who suspect they may have a bleeding disorder
should contact the Tennessee Hemophilia & Bleeding
Disorders Foundation at 1-888-703-3269 or visit the
Project Red Flag website at
www.projectredflag.org.
Back to Top
|
