GREAT
LAKES HEMOPHILIA FOUNDATION
HOSTS
“CATCH A WAVE” GALA
MILWAUKEE -- (February 25, 2010)
The Great Lakes Hemophilia Foundation - a
statewide organization that addresses the needs
of over 2,000 individuals and families affected
by hemophilia and other bleeding disorders in
Wisconsin—is hosting their annual Gala with the
beach theme of “Catch a Wave”.
The Gala will take place on March 20th,
2010 at the
Hilton Milwaukee City Center. The event
will begin at 5:30 p.m with cocktails, raffle,
and silent auction throughout the night. In
keeping with the theme, attendees are encouraged
to dress “beach chic”.
Guests will be entertained by the music of Paula
& Paul, while Patti Genko from Milwaukee’s own
Smooth Jazz 106.9 will be the emcee for the
evening. Two youth from the bleeding disorders
community will focus the evening’s program on
“How far we’ve come”. As a community we have
seen advances in treatment and care and we want
to celebrate the past and the bright future we
envision!
The Great Lakes Hemophilia Foundation provides
education and networking, scholarships,
camperships and financial assistance for
families. The Foundation is dedicated to
advancing the quality of life of individuals and
families affected by hemophilia or other blood
disorders by providing a broad range of services
and programs while supporting research to
improve care and to find a cure.
The Foundation was incorporated in 1974 as a
private, non-profit organization. GLHF is a
statewide organization serving the needs of
patients and their families with hemophilia,
vonWillebrand, and other bleeding disorders.
For more information, click
here.
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TAKE A WALK ON THE WILD SIDE WITH GREAT LAKES
HEMOPHILIA FOUNDATION
Bleeding Disorders Community Gathers at
Milwaukee County Zoo for Fifth Annual
Walk with the
Animals
MILWAUKEE, WI August 25, 2009
Great Lakes Hemophilia Foundation (GLHF)
is hosting its Fifth annual Walk with the Animals at
the Milwaukee County Zoo on Saturday, September 26th
to raise money to benefit families and individuals
struggling with hemophilia and other bleeding
disorders.
The public is encouraged to attend the event, which
begins in the morning at 9:30 a.m. at the Zoo
Terrace with registration and games followed by
stretching. At 10:45, participants will start the
walk through the zoo. Lunch and prizes for top
pledge earners will conclude the event in the early
afternoon.
By creating teams and raising pledges, participants
will help raise awareness and funds for GLHF, which
assists Wisconsin individuals and families affected
by bleeding disorders. In the words of one board
member, Jean Grow, a professor at Marquette
University, “GLHF makes such a difference in the
lives of people with clotting disorders. From
information, to advocacy, to financial support, they
offer the community an invaluable resource.”
Bleeding disorders, including hemophilia and von
Willebrand disease, are inherited and
interfere with the ability of the blood to form and
maintain a clot. Hemophilia affects more than 500
individuals in Wisconsin, while von Willebrand
disease affects 1-2% of the population, or roughly
110,700 Wisconsin residents.
For those interested in learning more or registering
for Walk with the Animals, visit www.GLHF.org.
Registration fee is $15 for adults, $10 for children
3 to 12 years, and free for children under age 2.
The registration fee includes admission to the zoo,
parking, t-shirt and lunch.
Great Lakes Hemophilia Foundation (GLHF) is a
non-profit organization located in Milwaukee, WI
that provides education, outreach, financial
counseling and assistance, networking, and advocacy
programs for individuals with bleeding disorders and
their families throughout Wisconsin. GLHF has been
supporting the Wisconsin bleeding disorders
community for 35 years, and continues to provide
much-needed assistance to roughly 2,000 individuals
and family members.
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UNLIKELY WISH COMES
TRUE FOR EAST TROY BOY
EAST TROY, WI July 16, 2009
For 11-year-old Tyler Schweder of East Troy,
WI his wish of participating in the East Troy Lions
Club annual Truck and Tractor Pull seemed like an
unlikely event, but with determination and some
outside help, that wish came true this Fourth of
July.
The Truck and Tractor
Pull, which is a tradition at the annual Lions Club
Fourth of July Celebration, is one of Tyler’s
favorite events to watch. Last year, his love for
the event turned into a desire to participate and
compete in this year’s event. For most kids, this
request would seem a simple one, but for Tyler, his
father knew it would be a long shot.
Tyler, a client of Great Lakes Hemophilia
Foundation, was born with severe hemophilia making
him prone to frequent spontaneous bleeding episodes,
often to the joints and muscles.
Suffering from
hemophilia also makes activities, such as the Truck
and Tractor pull, that most kids participate in seem
unattainable to him for safety reasons.
Thanks to the determination of his father, Ben
Schweder, and the help of Event Director Mike Lois,
the East Troy Lions Club, and its network, Tyler was
able to compete in the garden
tractor class of the
Truck and Tractor pull on Saturday, July 4. In order
to make things as safe as possible, Tyler and his
father worked with their doctor to take all the
necessary precautions—Tyler received treatment prior
to competing, was required to wear a helmet and was
closely monitored and supervised during the event.
“All I wanted was to let him on a tractor one time,
to let him accomplish that quietly,” notes Tyler’s
father Ben, “but it also shows that we don’t let
hemophilia limit us. I don’t know that I could ever
repay [the East Troy Lions Club] for what they did.”
Following the event, Tyler was recognized in front
of the over 2,000 person audience as a special rider
and explained a little about his situation. The East
Troy Lions also presented Tyler with the 2009 East
Troy Lions Truck and Tractor of the Year Award.
Through Great Lakes
Hemophilia Foundation, Tyler has attended summer
camp exclusively for children with bleeding
disorders and many other educational events. These
events give him and his family the opportunity to
network with other families and learn how to manage
and live with hemophilia. So even though Tyler’s
childhood has not been as carefree as most other
kids, in the words of Tyler’s father Ben, “We make
accommodations to be able to experience life.”
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Great Lakes Hemophilia Foundation
Awards Local Youth with Unique Camp Experience
MILWAUKEE, WI July
14, 2009
The Great Lakes
Hemophilia Foundation has awarded “Camperships” to
Wisconsin and Illinois youth ranging in age from 8 to 16
that have bleeding disorders. These Camperships pay all
of the fees for a weeklong stay this July at either Camp
Courage North located in Lake George, Minnesota, Camp
Warren Jyrch located in Leaf River, Illinois or Camp
Bold Eagle located in Michigan.
This camp enables young
people to have a true summer camp experience while still
accommodating for their unique conditions. Each camp is
specifically designed, equipped and staffed for children
with bleeding disorders. Alongside the traditional
summer camp activities, these campers also learn how to
deal with their condition in a positive way by working
through the medical, social and psychological aspects of
having hemophilia, von Willebrand disease, or platelet
function disorder.
“This experience continues
to be important for my son because it is one of the only
times he gets to network with other youth with bleeding
disorders. They are able to share their concerns and
personal triumphs with one another. The camp staff also
works to educate the children on their bleeding
disorders through various games, activities, and
discussions,” notes Deneé Kolehmainen, mother of a past
Campership recipient, of her son’s camp experience.
Hemophilia and von
Willebrand disease are the most common bleeding
disorders. Both
are inherited, and both
interfere with the ability of the blood to form and
maintain a clot. Hemophilia affects more than 500
individuals in Wisconsin, 165 of them under 21 years
old. Von Willebrand disease affects 1-2% of the
population, or over 50,000 individuals in Wisconsin.
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GREAT LAKES
HEMOPHILIA FOUNDATION SENDS
ADVOCATES TO MADISON FOR BLEEDING DISORDERS
Milwaukee, WI, April 29 2009
Great Lakes Hemophilia
Foundation (GLHF) sponsored a Legislative Day on April
29, 2009, empowering more than 60 adults and youth
affected by bleeding disorders to speak with Wisconsin
legislators. GLHF coordinated this opportunity for
its clients to speak with their representatives about
the high cost of treatment and importance of continued
state aid for the bleeding disorders community.
This year’s visit to Madison attracted the attention of
Governor Jim Doyle, who officially declared April 29 to
be Great Lakes Hemophilia Foundation Day.
A bleeding disorder is one
of the most expensive chronic disorders to treat.
Currently, the Wisconsin Chronic Disease Program (WCDP)
and Medicaid both provide much needed financial support
for low income individuals and families when faced with
treatment costs not covered by private insurance.
For example, one client advocate shared his personal
story with his representative: he is disabled, living on
a fixed income with no private insurance coverage, and
his treatment costs in 2008 totaled $650,000. Without
Medicaid coverage, he would have no way to afford his
necessary treatments.
GLHF provides its advocates
with a morning of training, after which they take their
urgent message for continued coverage for chronic
diseases to their legislators. It is also
imperative that all clotting factor products, for which
there are no generics, continue to be covered by
Medicaid. These products are pharmacologically and
therapeutically unique and must meet a very high
standard of quality. Increasing costs of health
care and pharmacy products are making adequate health
care more and more difficult for those with chronic
disorders to obtain.
GLHF argues that
maintaining or increasing Medicaid and WCDP aid dollars
will ultimately cost tax payers less than the
alternative. Individuals with severe bleeding disorders
– if uninsured and denied state assistance to cover
treatment costs – will almost certainly become disabled.
Because a disability restricts a person’s ability to
maintain employment, the financial burden represented to
tax payers to support the disabled person and cover
their expensive medical care is much greater than the
preventive dollars spent through Medicaid and WCDP.
Great Lakes Hemophilia
Foundation (GLHF) is a non-profit organization located
in Milwaukee, WI that provides education, outreach,
financial counseling, networking, and advocacy programs
to individuals with bleeding disorders and their
families. GLHF has been supporting the Wisconsin
bleeding disorders community for 35 years, and continues
to provide much-needed assistance to roughly 2,000
individuals and family members.
To learn
more about Advocacy click here
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GREAT LAKES HEMOPHILIA FOUNDATION
INTRODUCES
NEW MEMORIAL AWARD
AT ANNUAL GOLF OUTING
Milwaukee, WI, April 20 2009
Great Lakes Hemophilia Foundation (GLHF) will be holding
its annual Teeing Up For Charity® Golf Outing
at The Bog in Saukville on May 18. Unique to this
year’s event is a new award in honor of the late Pat
Burns (1949-2008), which will be awarded to an
individual displaying outstanding commitment to GLHF’s
mission.
GLHF’s mission includes dedication
to the advancement of the quality of life of individuals
and families affected by bleeding disorders by providing
programs and services while supporting research to
improve care and find a cure. Burns, who suffered from
hemophilia A, saw the annual Teeing Up For Charity®
event as a way to support GLHF and help others like
himself while spending time with family and friends.
Burns’ two brothers were also affected by hemophilia A,
and their sister Katie’s young adult son shares their
condition.
In memory of Burns, his
brother-in-law Ed Bekx says “[GLHF] has been a Godsend
to many people. Please know we appreciate all of your
continued efforts in helping everyone affected by
hemophilia in any way.”
Perry Parker will be playing
alongside Teeing Up for Charity® golfers, as
in previous years. This year’s event will also feature
UWM basketball coach Rob Jeter as an additional
special guest.
Great Lakes Hemophilia Foundation
(GLHF) is a non-profit organization located in
Milwaukee, WI that provides education, outreach,
financial counseling, networking, and advocacy programs
to individuals with bleeding disorders and their
families. GLHF has been supporting the Wisconsin
bleeding disorder community for 35 years, and continues
to provide much-needed assistance through the dedicated
service of its staff, donors, and volunteers.
To
learn more about the GLHF Golf Outing click here
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