“Dedicated to serving the needs of the bleeding disorder community through education, advocacy and the support of research to find a cure”.
History
The United Virginia Chapter of the National Hemophilia Foundation (UVC-NHF) was founded in 1975 by a group of concerned parents, patients, doctors and nurses with the common goal of making life easier for persons affected by hemophilia and related bleeding disorders. At that time, treating bleeding episodes was time consuming and not very efficient. Many bleeding episodes required lengthy hospital stays and left permanent damage. Life was difficult at best and pain was a way of life. Today, treatment is much better and most families are able to manage this condition through home treatment. Hospital stays are few and far between. However, living with a chronic illness still presents challenges. The cost of treating hemophilia can easily run over $200,000 per year. Insurance may be difficult to obtain and job choices are still somewhat limited. UVC-NHF continues to have a strong presence and provides a variety of support services, i.e. educational and support programs, advocacy opportunities, an annual meeting, family and summer camps, a quarterly newsletter, medic alert bracelets, seminars for parents, teens and adults, etc.
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Executive Director Kelly Waters PO Box 188 Midlothian, VA 23113 804-740-8643 vahemophiliaed@verizon.net 2008 Officers:
| President: (2 years) Jeff Krecek 4580 Three Chopt Rd. Troy, VA 22974 434-295-9515 Jeff.Krecek@cfainstitute.org |
Vice-President: (1 year) Terry Lamb 737 Wyndhurst Dr Lynchburg, Va 24502 434-846-2651 TLamb@FactorHealth.com |
| Treasurer: (2 years) Dorothy O’Connor 14300 Heathland Terrace Midlothian, VA 23113 804-378-6266 oconnorone@verizon.net |
Secretary: (1 year) Tracy Cleghorn 1307 Pheasant Circle Suffolk, VA 23434 757-539-7868 lance.cleghorn@charter.net |
Board of Directors (3 year terms) Kevin O'Connor 14300 Heathland Terrace Midlothian, VA 23113 804-378-6268 hemophiliaoc@verizon.net Steve Schofield 410 West Bank Street Bridgewater, VA 22812 540-828-1366 Schofield59@aol.com Lance Cleghorn 1307 Pheasant Circle Suffolk, VA 23434 757-539-7868 lance.cleghorn@charter.net Jennifer White 1105 Ledgebrook Ct. Chesapeake, VA 23322 757-546-9329 jennifer.white@norfolk.gov Al Valentino 913 Nicolay Place Midlothian, VA 23113 804-379-2354 al.valentino@alfalaval.com Michael Cole 382 Fenton Mill Rd. Williamsburg, VA 23188 (757) 345-6247 mecole@wm.edu Janice Cole 382 Fenton Mill Rd. Williamsburg, VA 23188 (757) 345-6247 jccmindful@yahoo.com
Contact Kelly Waters to join at vahemophiliaed@verizon.net.
Please find application here.
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What is comprehensive care and why is it important for persons with inherited bleeding disorders?
Comprehensive care is coordinated health care for persons with inherited bleeding disorders through a family-centered approach by a multidisciplinary team. The team includes specially trained physicians, nurses, social workers, physical therapists, orthopedic surgeons, infectious disease specialists, dentists, genetic counselors, nutritionists, and educational consultants. Comprehensive care focuses on the physical, emotional, social, educational, financial and workplace impact of bleeding disorders on the person and family. The comprehensive care team collaborates closely with the patient's medical home (primary care provider) within their community.
Studies have shown that patients with inherited bleeding disorders who have their care coordinated through a comprehensive bleeding disorder center live longer and healthier lives than those who receive care from a hematologist alone.
Four comprehensive bleeding disorder centers receive support from federal and state funding to provide comprehensive care in Virginia. These are:
Pediatric Centers
Bleeding Disorders Center of Hampton Roads
Children's Hospital of the King's Daughters
Division of Hematology/Oncology
601 Children's Lane
Norfolk, VA 23507
757-668-7613
Eric Werner, MD, Medical Director
Contact: Kim Stewart, BSN
Email: kstewart@chkd.com
Website: www.chkd.org
Children's National Medical Center
Fairfax Satellite Center
8501 Arlington Boulevard
Second Floor
Hematology Clinic
Fairfax, VA 22031
202-884-3622
Anne Angiolillo, MD, Medical Director
Contact: Chris Guelcher, RN, PNP
Email: cguelcher@cnmc.org
Website: www.dcchildrens.org
Pediatric and Adult Centers
Central Virginia Center for Coagulation Disorders
VCU Health Systems
PO Box 980461
1200 E. Broad Street, Room 442
Richmond, VA 23298
804-827-3306
J. Christian Barrett, MD, Adult Medical Director
Gita V Massey, MD, Pediatric Medical Director
Contact: Jan Kuhn, RN, MPH
Email: jgkuhn@hsc.vcu.edu
Website: www.vcuhealth.org/cvccd
University of Virginia
Department of Pediatric Hematology
Box 800386
University of Virginia Hospital
Primary Care Center
Room 2202
Charlottesville, VA 22908
Gary Kupfer, MD, Pediatric Medical Director Contact: Margy Sennett, PNP
434-924-8499
Email: mms9D@virginia.edu University of Virginia
Department of Adult Hematology
Box 800747
UVA Hospital
Jordan Hall
Room 2352
Charlottesville, VA 22908v
B. Gail Macik, MD, Adult Medical Director Contact: Lisa Palumbo, RN
434-982-6400
Email: cmp4h@Virginia.EDU
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Questions to Ask Yourself:
If you answered Yes to any of the questions - Then there is an opportunity for you!!
Committees that may be of interest:
Perhaps you are interested in serving on the board as:
Contact Us Now If You Are Interested In Making a Difference!
United Virginia Chapter - National Hemophilia Foundation
P.O. Box 188, Midlothian, VA 23113
(800) 266-8438, FAX (804)740-8643
vahemophiliaed@verizon.net
www.vahemophilia.org
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