NEHA PROGRAMS

DADS IN ACTON:
This program is designed to forge stronger bonds between fathers and their children, as well as provide opportunities for adult men to strengthen their own support network.  Three to four  "Dads in Action" programs take place annually; each event focuses on a different fun activity and incorporates an educational component.  Guest speakers are brought in to discuss current topics and teens and young adults are used as effective role models.  Incorporating physical activities promotes the importance of a healthy lifestyle.  It also provides an opportunity to reinforce the importance of home infusion skills, as evidenced by the morning routine at Dads in Action camp outs where father and son teams work together to infuse clotting factor before the physical day ahead.  It's a powerful event to witness and strengthens Dad's role as a caregiver.

FAMILY CAMP:
Now in its 17^th year, Family Camp is held at the Geneva Point Center in Moultonborough, NH and is a crucial educational opportunity for these families to learn about and cope with hemophilia.  The program has been shown to increase compliance with treatment regimens and improve medical outcomes, as well as build a strong community of support.  Through its effective health education, socializing, and mentoring programs it yields vital health and psychosocial benefits for families with hemophilia. 

For many children with hemophilia, this program is the only camp experience available to them because of their diagnosis.  It is more than "just a camp".  Dedicated nurses and doctors from the New England Hemophilia Treatment Centers volunteer their time to provide specialized medical care and education.  At Camp, parents and children learn up-to-date treatments and prevention strategies in a relaxed, "non-medical" atmosphere.  They also learn from each other and share experiences, information and resources.  Health care providers benefit from the opportunity to interact with their patients outside the medical setting.  They report that Family Camp improves their understanding of their patients' needs and enhances their hospital-based practice. As new treatment regimens have made it possible for children with hemophilia to be more active and even to be involved in competitive sports, Camp promotes fitness, regular exercise and safe participation in sports.  Hemophilia Family Camp has been recognized by the National Hemophilia Foundation as a model program for effective education in hemophilia care. 

Interested in seeing more?  Click here to view our schedule from Family Camp 2008.

HOLIDAY PARTIES:
These gatherings are held annually as a chance for families with bleeding disorders to get together informally during the holiday season. Parties are held in Needham, MA; Scarborough, ME; and Bangor, ME.  The Maine parties are held in collaboration with the Maine Hemophilia and Thrombosis Center.  Highlights included, a buffet lunch, holiday arts & crafts table for kids, a slide show of pictures from NEHA programs, entertainment, and a visit from Santa with a gift for each child.

PROJECT RED FLAG
Project Red Flag is the association's public awareness campaign to reach the more than two and a half million women nationwide with undiagnosed bleeding disorders. The campaign will educate women and their healthcare providers about the symptoms of bleeding disorders, especially von Willebrand disease (VWD), and encourage proper diagnosis and treatment.

SPRINGFEST
The purpose of this annual conference is to bring together the New England bleeding disorder community for a day of education, support and networking.  The target populations are individuals and families affected by bleeding disorders who reside in the six New England states; medical professionals and staff from eight federally-funded hemophilia treatment centers, as well as other medical institutions; and representatives from factor manufacturing and homecare industries.

The primary objectives of the program are: to offer a variety of educational sessions that address topics of current interest and importance to the community; to expose our members to a variety of opinions, perspectives and experiences by recruiting speakers from both the local and national communities; to offer opportunities for establishing and reinforcing networks of support among our members; to provide an opportunity for interaction and education between our members and representatives from factor manufacturers and homecare companies; to provide a youth program that offers bleeding disorders education, a fun field trip, and opportunities for children to connect with others who share similar life experiences; to publicly recognize distinguished volunteers from our community; and to strengthen relationships between NEHA and New England HTC staff by offering an opportunity for collaboration on program ideas and recruitment of speakers and session facilitators. 

Interested in seeing more?  Click here to view our schedule from SpringFest '08.

SUMMERFEST
An annual event targeted at bringing together families in Maine for an afternoon of education, support and networking.  Supported by the Maine hemophilia treatment center, each event focuses on the special needs of Maine families.  A social networking event is usually included after the event, and for the past several years, has been attendance at a Portland Sea Dogs baseball game.

WOMEN'S TEAS
NEHA sponsors a series of Women's Teas for women in the bleeding disorders community to get together for "good company, conversation and support."

YOUTH LEADERSHIP DEVELOPMENT

The Blood Brothers/Blood Sisters (BB/BS) Training Program empowers teens ages 16-20 through trainings that favorably impact their medical health, provide them with life and leadership skills, and give them an opportunity to serve their community. This program takes place at Family Camp.  After two days of intensive training, participants spend three days as counselors working with small groups of children.  Training continues during this time through regular monitoring and consultation with our training professional and at nightly staff meetings.  Participants become mentors and educators to younger campers and in the process learn more about bleeding disorders.  They are inspired to be responsible to the community, learn problem-solving skills, and engage in program development. Their help is often just the 'push' and 'inspiration' a young child needs to learn how to administer his/her own medication via intravenous infusion of clotting factor.

Our Leader-in-Training (LIT) Program focuses on younger teens, ages 13-16.  The LIT program recognizes that not all teens are interested in or appropriate for a counselor position.  By focusing on general leadership skills and building a strong foundation early on, LIT's are better prepared to identify and take on leadership roles in a variety of areas of their life.  Participants are involved in daily workshops, team building exercises, and a camp service project.  It is also their responsibility to plan and execute one camp-wide activity.  As LITs acquire skills, we expect they will experience positive results from doing and saying things that show these skills; they will see how their conduct affects others.  When people view themselves as having a leadership quality, they look for ways to act that are consistent with this view of self.  They don't limit themselves to just the skills we taught them.  Long after they've left the program, we hope they will keep searching for new ways to act that produce the results and feelings that come from making choices that display this characteristic.

__________________________________________________________________ 

NEHA SUPPORT

NEHA Newsletter
Our volunteer run, quarterly newsletter gives members current information on issues facing the bleeding disorders community on the local and national level.  Each issue is dedicated to a topic, pertinent at the time of publication and the distribution of relevant information to the community.  The Newsletter is currently printed and mailed to NEHA members, however future plans will post all issues on the NEHA Website for free, easy access.

NEHA Website (www.newenglandhemophilia.org)
This recently designed site is an essential tool in the dissemination of information to NEHA members and enhances the provision of our services. Information on bleeding disorders, NEHA Events, Corporate Giving, and our staff and volunteer board is included.

NEHA Emergency Assistance Fund
This program provides financial aid to needy families and individuals in crisis.  NEHA staff responds to requests for emergency aid that come from the Hemophilia Treatment Center staff who best know the situation.  Aid is limited to once a year and focuses on emergency situations where financial aid is needed to maintain the individual's health and well-being.