First Step (Ages 0-9)

First Step is a program created by the National Hemophilia Foundation to provide education, support and fun for families with children (ages 0-8) recently diagnosed with a bleeding disorder. Families involved with the First Step program take part in an annual retreat, attend quarterly networking events, and get matched up with a mentor whose own child(ren) with hemophilia is a little bit older now.

At the annual retreat, 10-20 families come together in either a couple of very large cabins, a lodge, or a hotel and spend an entire weekend getting to know one another, having fun, and discussing ways to cope with and manage their son’s hemophilia. We hope that families come away from the First Step retreat having learned something useful, but perhaps more than anything, we hope they come away several lifelong friends who understand exactly what it’s like to raise a son with hemophilia.  Experience has shown that these weekend retreats are the perfect setting to do just that.

The First Step Program Coordinator will plan events at least once a quarter to reunite these families for a little bit of networking and a chance to support one another when and if its needed.  Depending on what the group prefers, these events may be fun in nature or they may look a bit more like a support group.

One of the hallmark features of the First Step program is its mentoring component.  NHF has developed an extensive training program for mentor families, which we as a chapter use periodically to train new mentors.  These mentors work one-on-one with families whose child has recently been diagnosed with a bleeding disorder.  Eventually, some families find themselves switching from being the mentee to being a mentor as the years of experience begin to add up.

For more information about the First Step program, please contact Rob Alexander at ralexander@hemophilia.org or (614) 429-2120.