Support Connections for Learning

The National Hemophilia Foundation (NHF) is grateful to each and every donor to its Connections for Learning Program.  Your generosity directly supports an individual and/or family in need and gives them access to NHF’S Annual Meeting, the most comprehensive bleeding disorder event in the country.  The opportunity afforded through Connections for Learning will help participants learn more about their illness, meet peers with similar successes and challenges, and – in most cases – change their lives.

On March 10, NHF launched the application process for the Connections for Learning program.  By the application deadline on May 1, NHF received 93 completed applications in English and 9 in Spanish. Applications have come in from all over the United States. NHF’s Cultural Diversity Working Group and one member of Connect, NHF’s Young Professionals Group, are currently reviewing the applications and decisions will be made by the end of May. Some statistics on the applicant pool overall include:

• 66% have never been to NHF’s Annual Meeting
• 58% report feeling alone in relation to their bleeding disorder
• 31% report feeling somewhat or not confident in managing their/their immediate family member's bleeding disorder

 Below are some notable comments from two of the applications:

 “Our son was diagnosed in 2004 and we were able to attend Annual Meeting in 2005.  However, we have not been back since then due to financial issues. Since more than 10 years have passed, we would love to be able to go back and learn what’s new out there and see what other treatment options are available for kids with severe hemophilia A with an inhibitor. We are always open to new ideas and how to improve our son’s life; as a family, we want him to feel normal like any other boy.  It’s very difficult to make him understand that he can still lead a fulfilling life and doesn’t have to feel left out.  Sometimes it’s easier to hear that from peers.  We know that if we are able to go to Annual Meeting, we can get the tools we need to better advocate for our son and to show him that he can advocate for himself.   Also, we can bring back some helpful information to our treatment center to let other families know that there are other possibilities for our community, bringing some hope to other families in similar situations. We are bilingual, so at times we are asked to reach out to other families and we are glad to do so. We have experienced many challenges on our journey, but we have made it this far and and hope that our family can set an example for others.”

 “As a relatively new Von Willebrand family, being able to attend the Annual Meeting would be of tremendous educational benefit for us.   In the two years that my daughters have been diagnosed with VWD, I have already had to educate the school nurses, coaches, horseback riding instructors, and youth group trip leaders on what to do in case my daughters have an accident in their care.   My youngest daughter had to have a minor dental surgery last summer.  Because of her condition, the minor surgery became a major coordination of experts.  Her hematologist, dental surgeon and anesthesiologist all worked together in a coordinated effort to ‘fix her teeth’ without having a major bleed- all new experiences for our family.  Thank you for the opportunity to apply for the Connections for Learning Grant and thank you for the work your organization does for families like mine.  If given the chance to attend the conference, the knowledge we take home from the conference and the connections would be a huge blessing for our family.”

Links:

• More about NHF's Annual Meeting