March is Bleeding Disorders Awareness Month (BDAM) and a great time to show support for the bleeding disorders community. This month aims to bring together people with inherited bleeding disorders to raise awareness of these rare conditions and their potential challenges.
Throughout BDAM and up until World Hemophilia Day on April 17th we will be focusing our fundraising efforts on our scholarship program which includes our Lyman Fisher Scholarship, travel grants for national meetings, and our Terry Lamb Enrichment Scholarship. With your help our goal is to raise at least $6,000 from our amazing community of donors, constituents and supporters!
In an effort to raise awareness, we will be highlighting the stories of VHF Hope Society donors beginning with Don Smith and sharing why the work of VHF motivated them to become monthly donors. We hope Don’s story inspires you to give today!
What motivated you to become a monthly donor to the VHF Hope Society?
Several reasons led me to become a monthly donor to the VHF Hope Society. I had been giving to VHF on “occassions” but wasn’t really tracking my giving, so I never really knew if my donations matched my heart for VHF. Being able to establish an automatic, programmed giving routine now gives me confidence that I’m sharing my resources as much as possible with VHF. This may sound funny, but I’m basically lazy! The automatic aspect of the Hope Society takes the effort of remembering and executing my giving off of my “to-do” list. I know that having giving commitments that are real helps VHF more effectively plan programming. As a member of the Board of Directors, this greatly enhances the effectiveness of VHF’s budget and program planning.
How will you celebrate Bleeding Disorders Awareness Month?
This year I plan to celebrate Bleeding Disorders Awareness month through educating my friends on social media how having a bleeding disorder has affected my life. My hemophilia is a mostly invisible disease, so I intend to highlight the “unseen” aspects like chronic pain, career planning, life planning, and the social aspects of living with my disorder.
What impact has the VHF scholarship program had on your life (if any)?
As a member of the VHF Board of Directors, I get to see firsthand how impactful our scholarship programs are to those who apply and receive funds. Every individual’s reaction brings a big smile to my face and emphasizes the importance of the program.
How are you/your family affected by bleeding disorders?
My Severe Factor VIII deficiency was a spontaneous mutation. Thus, my parents had no knowledge of bleeding disorders until they found themselves in the deep end of a pool of mystery! Their tenacity to learn and incorporate my disorder into daily life has given me a tremendous amount of compassion and desire to help families in similar situations.
What have you and your family gained from involvement with the chapter?
Prior to marrying me, my wife had no exposure to bleeding disorders. The first VFH event we attended was the “Wine Auction” in 2008 where she began to make connections and share with others in the community. At each event, she learns more about bleeding disorders, but more importantly, has made life-long connections (as have I).
What are your hopes and dreams for the future of those growing up with bleeding disorders as new therapies emerge?
Well, obviously a cure is the “holy grail,” and I think we’ll get there. However, it will come in a way that shrinks the bleeding disorder community one-disease-at-a-time. So as the face of the community changes, my hope is that those remaining continue to support and love each other as we always have! Our shared experiences make the entire community strong.