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Outstanding Community Involvement Award - Weldon Family

Outstanding Community Involvement Award

The Weldon Family
In reviewing the Weldon family's many contributions and supportive activities for the IFOPA and the FOP community, we would like to recognize them for the scope and variety of their fundraising and awareness activities. As a start, of course, there is the establishment of the Weldon FOP Research Fund with its focus on the genetic causes of FOP and the development of safe treatment options. Such an endowment, providing a reliable and essential stream of critical funding, is recognized as an extraordinary, central aspect of the research effort at the FOP Lab and especially in support of the search for multigenerational FOP families. In addition, their extraordinary efforts at organizing events such as the annual golf tournaments and luncheons, dinner dances and celebrity boxing bouts, cocktail parties and comedy shows, and Friendraisers and recruiting Boston Marathon runners (to name only some!) are truly impressive. These events in turn also serve to promote FOP awareness as does the green bracelet campaign and the inclusion of information about FOP on the Weldon family business trucks.

Hillary Weldon has spearheaded numerous events such as the Capitol Hill Awareness (at which Whitney also spoke passionately about our cause), and has served as an amazing spokesperson for FOP awareness. It is also important to acknowledge Hillary's valuable leadership and pivotal involvement in the Patient Rare Disease Network for the USBJ Decade. Hillary also graciously co-hosted the First Mother's Retreat, providing an incredible opportunity for FOP moms to bond with each other.

We also wish to recognize Whitney's blossoming into an inspiring young lady with her personal example of courage and determination. Whitney's promotion of FOP awareness through her personal interviews with the press and media are admirable. In particular, Whitney provided a wonderful interview in the Bound by Hope video, and an eloquent presentation at the Sam Adams concert. We also congratulate her on winning the prestigious Steifel Award.

The extraordinary outreach of the Weldon family each year to bring FOP awareness through local media coverage via television and radio is amazing and we are deeply grateful for all that they have done for the FOP Community. They are all extraordinary people with a very special place in our hearts. Thank you!

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