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Each year, HFM celebrates the arrival of spring with our largest annual consumer education conference, SpringFest! Parents, kids, and individuals come together for a weekend of fun and educational events. SpringFest offers community members a chance to learn new information, participate in special activities, and connect with our bleeding disorders family. Also, don’t miss a chance to win prizes like a trip to NHF or HFA!
For more information, call HFM at 734-544-0015
Bleeder and a Buddy
Bleeder and a Buddy Weekend Retreat is a time for teens ages 13 – 19 with bleeding disorders, and one of their non-affected friends, to get together at a nearby camp setting in Michigan. Both teens learn more about bleeding disorders, and how to assist someone else who might need emergency support in a critical medical situation. Learning new leadership skills is also a focus of this weekend as well as establishing social connections with other teens.
For more information contact Tim Wicks at email@example.com
Every spring, teens with bleeding disorders join a group of HFM staff and counselors for a weekend away from home where they focus on communication and leadership skills. Over the course of the weekend, teens ages 13-19 living with bleeding disorders participate in fun activities designed to help build trust, mutual respect, openness, and teamwork skills. Some activities have included high ropes courses, laser tag games, food preparation, and many more!
Questions? Contact Tim at firstname.lastname@example.org
Join us for a relaxing, informative weekend retreat with other women who have a bleeding disorder or are a caretaker for someone else. This event usually takes place in the fall. Topics included in past retreats are VWD genetics; relaxation and self-care; managing menstruation, advances in hemophilia treatment and challenges for teen girls with bleeding disorders.
For more information contact: Patrice Thomas, email@example.com
PEP – Parents Empowering Parents
Parents Empowering Parents (commonly known as PEP) is a non profit program who’s sole purpose is: to empower parents by teaching them skills to improve quality of life while raising a child with a bleeding disorder. Simple. However, that simple purpose requires great effort. PEP tirelessly works to pursue the following:
1) A long-sustained partnership with Bayer that supports PEP trained professionals and parent peers to offer the program to parents of children with bleeding disorders offer in their local areas.
2) PEP is designed to offer relevant, evidenced-based content and materials, while encouraging parental insight to bolster a parent’s confidence and a professional’s knowledge-base about issues related to parenting and family management when rearing the child with a bleeding disorder.
3) The integrity of PEP centers on a parent-to-parent peer approach to programming. PEP provides national and international train-the-trainers programs to prepare professionals to become PEP Trained Facilitators as well training parents who have been through a PEP program to equip them to deliver the most comprehensive, supportive and insightful local PEP program possible.
After more than 20 years of serving the bleeding disorder community, PEP prides itself in having successfully trained, supported and strengthened over 3000 parents and professionals across the USA and globe. PEP is a pillar in the bleeding disorder community, known for being a solid, evidence based, best practices supportive resource for parents, families and professionals.
HFM has implemented a Mentoring/Tutoring program for a small group of school-aged children with bleeding disorders living in Detroit through a partnership with the Detroit Children’s Hospital. The Mentoring program is designed to support the youth socially, academically, and physically. During the academic school year, kids have been meeting weekly with adult mentors who are also living with bleeding disorders. Every week, the students are transported from their homes to eat dinner, exercise, and then work with a mentor to complete homework or academic studies. Once every couple months, the kids are invited to attend special weekend outings (such as laser tag and go-karts) in order to foster positive mentoring relationships.
For more information about the program, please contact Torey Allen. firstname.lastname@example.org 734-961-3510
Outreach to Spanish and Arabic-Speaking Communities
HFM has been providing support and networking opportunities to groups that have been historically underserved in the bleeding disorder community. At these outreach events, families are invited to participate in educational sessions and fun activities in their native languages (either Spanish or Arabic).
For more information about the events, please contact Torey Allen. email@example.com 734-961-3510
Infusion Training Program
We have created an infusion training program for children with bleeding disorders. This 4 week program is followed up with a final night of celebration to recognize their achievements toward implementing self-infusion. For some kids, this is a great way to follow up what they learned at Camp Bold Eagle and for others it is their first exposure to self-infusion. Lead by HTC nurses and social workers, parents and kids receive valuable information about this important step in building independence in managing their bleeding disorder. The program is made possible by a grant from the Hemophilia Federation of America.
Days for Girls
Every girl and woman has inherent worth and dignity. Days for Girls celebrates this by providing sustainable feminine hygiene solutions and health education. When girls and women have health, education, and opportunity, communities and our world are stronger.
HFM is involved in support the Days for Girls project by sewing and assembling feminine hygiene “kits” which are then distributed to girls all over the world. We’d love to have more Days for Girls sewing weekends, and we need your participation! NO SEWING EXPERIENCE NEEDED!
For more information: email Patrice Thomas, firstname.lastname@example.org