Lone Star Chapter of the National Hemophilia Foundation

1. Dedicated to changing lives of those with bleeding disorders through education, advocacy, and research. Lone Star Chapter of the National Hemophilia Foundation 10500 Northwest Freeway Suite 226| Houston, TX 77092| 713-686-6100| www.lonestarhemophilia.org For more information contact Melissa Comptonat 713-686-6100or mcompton@lonestarhemophilia.org

2. 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 NHFis often a vital resource in this search. The Lone Star Chapter of NHFhas become the educator, the friend and mentor, the safety net, and the advocate for individuals with hemophilia, and von Willebrand’sDisease, among other related bleeding disorders in South Texas. But The Lone Star Chaptercannot do it alone. We rely on a strong network of volunteers, donors, and community supporters to fulfill its mission.

3. 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 NHFis 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.

4. 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 deficienciesare 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.

5. 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.  VWDis 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.

6. 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 NHFworks 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.

7. How we Change Lives Lone Star Chapter of NHFPrograms 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 We partner with Hemophilia Treatment Centers and Industry Partners to provide meaningful educational programming for our families. “Let me tell you my story of Hemophilia…to be written in first-person tone, from the story teller.” –Name

8. 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.orgor call Melissa at 713-686-6100

9. 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