Lone Star Chapter of
the National
Hemophilia Foundation
Dedicated to changing lives of those with bleeding
disorders through education, advocacy, and research.
10500 Northwest Freeway Suite 226 | Houston, TX 77092 | 713-686-6100 |
www.lonestarhemophilia.org
For more information contact Melissa Compton at 713-686-6100 or
mcompton@lonestarhemophilia.org
The Face of Hemophilia
Envision being the parent of a newborn who has been diagnosed with chronic bleeding disorder for which
there is no cure. You learn that the disorder is inheritable; yet your family has no prior history with the
condition. You are told by medical professionals that it is, “the result of a genetic mutation that occurs in
nearly 1/3 of all diagnosed cases”. There is a steep learning curve of treatment options, management of
medications, navigating the impact on your family’s insurance coverage, and best practices for self-care. The
bleeding disorder only affects 1 in 10,000, so there are not resources readily available at every turn.
What would you do? Where would you go?
Living with or caring for someone with a bleeding disorder can be challenging, but manageable with the right
balance of education, treatments and therapies, and self-care. Families and individuals are often in search of
answers to their questions; solutions to their challenges; and effective treatments for their needs in an attempt
to find this balance. The Lone Star Chapter of NHF is often a vital resource in this search.
The Lone Star Chapter of NHF has become the educator, the friend and mentor, the safety net, and the
advocate for individuals with hemophilia, and von Willebrand’s Disease, among other related bleeding
disorders in South Texas. But The Lone Star Chapter cannot do it alone. We rely on a strong network of
volunteers, donors, and community supporters to fulfill its mission.
The History of The Lone Star Chapter of
the National Hemophilia Foundation
The Lone Star Chapter of the National Hemophilia Foundation was founded in 1969. We serve over 500
families in South Texas, including those in Houston, Austin, San Antonio, El Paso, and the Valley.
The Lone Star Chapter of NHF is dedicated to providing improved access to care, finding better treatments,
and ultimately, a cure for bleeding disorders. Through our affiliation with the National Hemophilia
Foundation (NHF) and it’s 51 chapters across the country, The Lone Star Chapter provides support to the
bleeding disorders community through education, resource development, shared vision, and progressive
advocacy.
Bleeding disorders are not an event: They are a lifetime experience encompassing ongoing efforts into
holistic treatment regimens as an individual’s body grows and develops. Today, an individual diagnosed with
a bleeding disorder can often lead healthy and productive lifestyles thanks in large part to the advancement of
research and the impact of organizations that provide awareness, early education, and advocacy.
Organizations like The Lone Star Chapter of the National Hemophilia Foundation.
Bleeding Disorders 101:
An Introduction to Hemophilia
What is Hemophilia?
A person born with hemophilia or von Willebrand disease will have it for life. Bleeding disorders result from the inability of the blood to
clot due to a defect in, or an insufficiency of, one or more key clotting proteins. Hemophilia A is the most common type of hemophilia. It
is also known as factor VIII deficiency or classic hemophilia. Approximately one in 5,000 males born in the United States has hemophilia
A. Hemophilia B is the second most common type of hemophilia. It can also be known as factor IX deficiency and is far less common
than Hemophilia A. Occurring in about one in 25,000 male births, hemophilia B affects about 3,300 individuals in the United States.
Hemophilia is largely an inherited disorder, however, in about 30% of cases, there is no family history
of the disorder and the condition is the result of a spontaneous gene mutation. While the majority of
those diagnosed with hemophilia are male, it can occur in females although this extremely rare. All
races and economic groups are affected equally.
There are several other factor deficiencies that cause abnormal bleeding. These include deficiencies
in factors I, II, V, VII, X, XI, XIII and von Willebrand factor. The most severe forms of these deficiencies
are even rarer than hemophilia A and B.
When a person with hemophilia is injured, he does not bleed harder or faster than a person without
hemophilia, he bleeds longer. The result is the same for people with hemophilia A and B: they both
bleed for a longer time than normal.
Bleeding Disorders 101:
An Introduction to von Willebrand
What is von Willebrand Disease?
von Willebrand disease (VWD) is the most common type of bleeding disorder. VWD is a bleeding
disorder caused by a defect or deficiency of a blood clotting protein, called von Willebrand Factor.
The disease is estimated to occur in 1% to 2% of the population. The disease was first described by
Erik von Willebrand, a Finnish physician who reported a new type of bleeding disorder among
island people in Sweden and Finland.
von Willebrand Factor is a protein critical to the initial stages of blood clotting. This glue-like
protein, produced by the cells that line the blood vessel walls, interacts with blood cells called
platelets to form a plug which prevents the blood from flowing at the site of injury. People with
VWD are unable to make this plug because they do not have enough von Willebrand Factor or their
factor is abnormal.
VWD is a genetic disease that can be inherited from either parent. It affects males and females
equally. A man or woman with VWD has a 50% chance of passing the gene on to his or her
child. There are no racial or ethnic associations with the disorder. A family history of a bleeding
disorder is the primary risk factor.
How The Lone Star Chapter of NHF
Makes A Difference!
Living with a bleeding disorder can be challenging. Beyond the physical limitations, medical
care can cost more than $1 million annually, with the average cost of care running $60,000 to
$300,000. Bleeding disorders are treated with an injection into a vein, called an infusion and
many live with secondary effects, such as long-term joint damage caused by untreated bleeds
due to joint injuries.
Each and every day, The Lone Star Chapter of NHF works with families and those living with
bleeding disorders to make a positive difference in their lives. Broadly, we accomplish our
mission through these areas of focus:
 Foster Healthy Development of Youth with Bleeding Disorders
 Create Communities of Awareness and Support
 Provide Critical Education and Advocacy
 Promote Research for Better Treatments, Therapies and Ultimately A Cure
These four tenants of our mission guide the programs we deliver to those living with
bleeding disorders.
How we Change Lives
Lone Star Chapter of NHF Programs
“Let me tell you my story of
Hemophilia…to be written in first-person
tone, from the story teller.”
Texas Bleeding Disorders Conference
Blood Brotherhood
Steps for Living
Youth Leadership Program
Camp Ailiphomeh
Victory for Women
Winter Educational Events
Family Education Days
Helping Hands
Matthew Thomas Memorial Educational Scholarship
Factor Friends Newsletter
–Name
We partner with Hemophilia Treatment Centers and Industry Partners to provide meaningful
educational programming for our families.
How You Can Help
Black and Blue Casino Gala
Become a Corporate Sponsor, Sponsor a Table, Attend the Event, Donate a Silent Auction Prize
Lone Star Hemophilia Walk
Become a Corporate Sponsor, Sponsor a Team, Create a Walk Team, Host a Fundraiser
Camp Ailiphomeh
Sponsor a child to attend the weeklong summer camp
Texas Bleeding Disorders Conference
Become a Corporate Sponsor of one of the largest educational weekends in the country.
For more information on these and other opportunities, visit our website at www.lonestarhemophilia.org or call Melissa at 713-6866100
Leadership
“You can design and create the most wonderful place in the world,
but it takes people to make the dream a reality.” –Walt Disney
[INSERT CHAPTER NAME] Leadership
Nicholas Zasowski, Board President
Jennifer Borders, 1st Vice President
Brian Compton, Treasurer
Barry Haarde, Secretary
Dan Bond, Trustee
Julie Longo, Trustee
James Setliff, Trustee
Ed Kuebler, HTC Advisor
Aleida Stark, HTC Advisor
Brian Chubb, Industry Advisor
Lone Star Chapter of NHF Staff
Melissa Compton, Program Coordinator
Heidi Hensley, Administrative Assistant
Want to serve Lone Star Chapter? Find out
more about board and committee service by
contacting Melissa Compton at
713-686-6100 or
mcompton@lonestarhemophilia.org