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Our Staff & Board of Directors

 

 

Melissa Compton, Executive Director

Melissa has been involved with the Lone Star Bleeding Disorders Foundation since learning her son has hemophilia in 2003. She began volunteering, and has served as Hemophilia Walk Manager and Program Coordinator before becoming Executive Director. Melissa graduated from Texas A&M University, where she met her husband Brian. She and Brian have two children, son Kyle, and daughter Sarah. She is thrilled to be serving the bleeding disorders community of Texas.

 

 

Heidi Hensley, Director of Community Relations

Heidi has worked for the Lone Star Bleeding Disorders Foundation since 2008. She is privileged to serve such an amazing community! It is important to her to raise awareness for the bleeding disorders community as well as help provide families with education, support and advocacy. Heidi graduated from Texas A&M University. She is married to her high school sweetheart and they have four children. She enjoys spending time with family and friends and playing tennis.

Kelley O’Hara, Outreach and Education Coordinator

Kelley has been involved with the Lone Star Bleeding Disorders Foundation since her son’s hemophilia diagnosis in 2000. She became involved with the First Step program helping newly diagnosed families and served on the board as a trustee. Kelley graduated from Texas A&M University with a psychology degree then became a nurse as a second career. She is married to Ryan and they have a blended family of five children. She is excited to be back involved with the bleeding disorder community.

Tara Kosh, Development Manager

We are excited to welcome Tara Kosh to our staff as Development Manager! More to come on Tara soon!

Board of Directors

The Board of Directors for the Lone Star Bleeding Disorders Foundation is the governing body. The Board, along with its advisors, meets bi-monthly to discuss governing and programmatic issues for the organization.

  • Amanda Wolgamott, President
  • Allison Pohl, 1st Vice President
  • Dan Bond, 2nd Vice President
  • Aaron Gonzalez, Treasurer
  • Heather Pohl, Secretary
  • Gail Boggs, Trustee
  • Celia Patino, Trustee
  • Juan Guzman, Trustee
  • James Setliff, Trustee
  • Laura Portales, Trustee
  • Donna Oldfield, PT, Gulf States HTC, Treatment Center Advisor
  • Trinh Nguyen Texas Children’s Comprehensive HTC, Treatment Center Advisor
  • Madi Boggs, Teen Advisor

News from HFA

  • Word from Washington: November 2022

    Midterm elections are mostly wrapped up as November draws to a close. The race between Sen. Raphael Warnock and Herschel Walker heads to a runoff in early December, but regardless of the outcome in that contest, control of the U.S. Senate remains – narrowly – with the Democrats. Control of the House of Representatives, by The post Word from Washington: November 2022 appeared first on Hemophilia Federation of America.

  • State of the States: Fall 2022

    In this edition of State of the States, South Dakota votes to expand Medicaid, Oregon receives landmark approval to provide continuous Medicaid coverage for young children, and Delaware joins 14 other states in protecting copay assistance for consumers. Midterm elections result in little change in partisan control of state legislatures while states race to prepare for the looming end of the COVID public health emergency and the prospect of mass Medicaid terminations. The post State of the States: Fall 2022 appeared first on Hemophilia Federation of America.

  • Press Release: First-Ever Gene Therapy Approved for Hemophilia B

    FOR IMMEDIATE RELEASE  First-Ever Gene Therapy Approved for Hemophilia B  National patient advocacy organization issues formal statement.  WASHINGTON, D.C., Nov. 23, 2022—Hemophilia Federation of America (HFA), a national advocacy leader for patients with bleeding disorders, released a statement considering recent news that the U.S. Federal Food and Drug Administration (FDA) approved CSL Behring’s (CSL) HEMGENIX® The post Press Release: First-Ever Gene Therapy Approved for Hemophilia B appeared first on Hemophilia Federation of America.

  • HFA Statement on FDA Approval of First-Ever Gene Therapy for Hemophilia B

    Five years ago, Hemophilia Federation of America articulated a broad vision that includes advocating for improved care and quality of life for those affected by bleeding disorders. Hemophilia imposes many burdens: painful and unpredictable bleeding; joint damage or other serious long-term complications; onerous treatment regimens; and numerous other constraints on personal and family life. HFA The post HFA Statement on FDA Approval of First-Ever Gene Therapy for Hemophilia B appeared first on Hemophilia Federation of America.

  • BioMarin Investigational Gene Therapy Updates

    An update for the hemophilia community from BioMarin regarding a previously reported serious adverse event in the ongoing hemophilia A gene therapy [valoctocogene roxaparvovec, BMN 270] Phase 3 study that was deemed, by the Independent Data Safety Monitoring Committee and the company, very unlikely to be related to the investigational therapy. Clinical Development Program Update The post BioMarin Investigational Gene Therapy Updates appeared first on Hemophilia Federation of America.