Excerpts taken from HFO summer Camp pamphlet:
The Hemophilia Foundation of Oregon ( HFO) began its summer camp program in 1970 and today over than 60 campers from Oregon and SW Washington attend the annual summer camp.
For many of these kids, their week at camp is the highlight of the summer, and is their only contact with other children with a bleeding disorder.
The camp staff includes an around the clock physician and nurse to assist in medical treatment as the need arises. A counseling staff which includes several adults with bleeding disorders (many of whom were former campers) ensures each youngster a rewarding and enjoyable summer camp experience.
At camp, a positive " can-do" attitude is encouraged rather than focusing on what a youngster is unable to do. During camp, kids are not viewed as children with bleeding disorders, but simply as kids who have a very special medical condition. They swim, shoot baskets, play table tennis, and learn arts and crafts. Cabin groups go on overnight campouts, hike in the woods, and enjoy a program of evening activities, concluding the day with a relaxing campfire. Campers participate as they are capable, each setting his or her own pace. Children with hemophilia or other related bleeding disorders( and their siblings on a space available basis) are encouraged to attend. There is a low minimal registration fee and the Foundation offers a limited number of scholarships.
The Hemophilia Center at OHSU Factor Distribution Program offers factor medications to center patients under the federal 340B program. Under this program we are able to purchase clotting factor at a discounted price, passing the savings on to patients. Our factor program is not for profit and the funds generated from this program are used to support the Hemophilia Center patient care services, and we continue to look for ways to expand the services our patients receive.
Zack Duffy, our factor program coordinator works directly with patients to ensure safety, quality and improved patient care. Zack is committed to making sure each patient has factor when they need it. Zack has worked with teenagers and young adults for much of his career and has a special interest in helping teenagers transition to managing their own factor supply.
Next First Steps Conference: January 30, 2016 in the Vey Auditorium of Doernbecher Children's Hospital
The Hemophilia Center at OHSU has held one-day First Steps conferences in Portland. All families with children with a bleeding disorder are invited but the program is primarily for families with infants, toddlers and school age children. The presenters include The Hemophilia Center clinicians, and guest speakers and closes with a panel of young men with bleeding disorders to talk about growing up with a bleeding disorder. The planning committee has included a parent.
The program includes breakfast, lunch and snacks. Childcare has been provided. There is time for families to meet each other and ask experts questions. The program has been held in a hotel at the waterfront and on the hill on the 11thfloor of Doernbecher Children's Hospital. Travel scholarships and assistance with lodging for families coming from a distance have been provided.
Past topics have included Hemophilia & Bleeding Disorders 101, treatment options, sports & recreation, physical therapy, discipline options, genetics, discussion groups, toilet training for toddlers and young children, food and nutrition. There have been "rap groups" for parents to share their experiences and learn from each other. The panel of young adults with hemophilia and other bleeding disorders has been very popular and the men are open to answering all sorts of question.
First Steps is usually held in the beginning of the calendar year and usually in years when a PEP program is no held. First Steps is based on a National Hemophilia Foundation curriculum.
The National Hemophilia Foundation now has a Steps for Living website covers "Education for all life stages." The website http://www.stepsforliving.hemophilia.org is interactive, has games and quizzes, videos and articles you can refer to when the time is right for you. The sections include: The Basics of Bleeding Disorders, First Step (Birth – 8 years), Next Step (9-15 years), Step Up (16-25years), Step Out (25+ years) and Resources.
An educational program designed by the Hemophilia Foundation of Oregon and the Hemophilia Center at OHSU after a focus group of volunteers and teens met and shared ideas. The program is designed to have 48+educational modules that will be presented in teen-specific events over a 4-6 year time period. Teens could enter the program at any time and not experience a repeat program before they age out.
The educational modules are being designed to help teens successfully transition from living with their parents to living on their own. Modules will be grouped under major concepts such as, but not limited to, leadership, bleeding disorder, education, and self-advocacy. The idea is to offer about 12-14 modules a year through engaging teen programs offered once each quarter of the year. Teen programs will be offered as weekend-long and day-long programs. Outcomes tied to the educational modules and aligned with the NHF Transition Guidelines and CDC Guidelines for Growing will be measured using pre and post-questionnaires and consumer satisfaction surveys. Independent health care behaviors will be emphasized.
Next PEP Retreat: April 8-10, 2016 in Newport Beach, OR
Parents Empowering Parents (PEP) is a weekend retreat program that is presented through collaboration between The Hemophilia Center and Hemophilia Foundation of Oregon. The goal is to improve the relationships between parents, child and the treatment center; increase understanding of the bleeding disorders; improve responses to bleeding episodes and provide parents with skills to effectively parent the child with a bleeding disorder.
The PEP program was designed to help parents of children and teenagers with bleeding disorders gain skills and insight on the challenges that the bleeding disorder has on the family, parenting styles, communication, discipline, and feelings. The local training team includes a parent with a child with a bleeding disorder, staff from the Hemophilia Foundation of Oregon and clinicians from the Hemophilia Center. The parents are encouraged to attend as couples, but single parents and parents who cannot come as a team are very welcome.
PEP is a strength based program – building on the parenting abilities parents already have. PEP is a supportive environment. All attendees are parents of children with bleeding disorders. Relationships between the parents who come to a PEP weekend may continue after the weekend has ended.
The course begins on a Friday evening and finishes on Sunday afternoon. All meals beginning with dinner on Friday through lunch on Sunday and lodging at the hotel/resort are paid through a grant from the National PEP program organization. The cost of transportation to the hotel may be covered if assistance is needed. NO CHILD CARE IS PROVIDED. In 2013 Oregon PEP was held at the Oregon Garden Resort (Silverton) and in 2014 PEP was held at Village Green Resort (Cottage Grove). Dates have been chosen for the 2015 PEP program.
Because Hemophilia is inherited in an X-linked fashion, the vast majority of people affected by this disorder are boys and men. We, however, identified an unmet need in girls and women with bleeding and clotting disorders who have long been medically underserved.
Dr. Jody Kujovich, an OHSU medical hematologist, began evaluating and treating women with a wide variety of bleeding and clotting disorders in the Women's Hemostasis and Thrombosis Clinic. Dr. Kujovich's clinic is staffed by a team from the Hemophilia Center, and housed in OHSU's Center for Women's Health. Dr. Kujovichis now providing increasingly complex care to women with a range of diagnoses including Von Willebrand disease, symptomatic carriers of hemophilia, immune thrombocytopenia (low platelets), various types of blood clots, and hematology problems complicating pregnancy. The clinic is now an important resource for primary care and specialty providers at OHSU and within the community who refer women with complex bleeding and clotting issues.
Dr. Kristina Haley joined The Hemophilia Center faculty after completing her Pediatric Hematology-Oncology fellowship at OHSU. The addition of Dr. Haley to the staff expanded the services of the Women's Hemostasis and Thrombosis Clinic to provide care to adolescent women with bleeding and clotting disorders. The Young Women's Hematology Clinic-deemed "Spots, Dots and Clots" opened in October 2013. Spots, Dots and Clots Clinic is also located in the Center for Women's Health, alongside Dr. Kujovich's clinic. Dr. Haley sees girls and young women ages 12-18 years who are referred for evaluation of abnormal bleeding or clotting. It is the first of its kind on the West Coast and joins a small group of similar clinics across the United States. Dr Haley's clinic provides specialized care to a population of patients with bleeding and clotting disorders that make common everyday experiences like menstrual periods and selecting oral contraceptives a clinical challenge.