WE ARE A TEAM OF VOLUNTEERS
The Fibrous Dysplasia Foundation is operated by people with FD, MAS, and Cherubism and their supporters with the assistance of some very dedicated medical specialists. It has no paid staff. Your participation is welcome in many areas!
GETTING INVOLVED WITH THE FIBROUS DYSPLASIA FOUNDATION
LEADERSHIP
The Board of Directors governs the direction of the FD Foundation and members are deeply involved in the development of projects. Terms are three years.
Board of Directors: https://www.fibrousdysplasia.org/index.php?page=47
To nominate yourself or someone else: BOARD MEMBER NOMINATION FORM
The Medical Advisory Board screens applications from physicians for inclusion in the database, helps identify and secure appropriate speakers for conferences and reviews FD Foundation publications of a medical nature.
Medical Advisory Board: https://www.fibrousdysplasia.org/index.php?page=49
To nominate yourself or someone else please send a message to info@fibrousdysplasia.org and explain your capabilities and interests.
RESEARCH & CLINICAL SUPPORT
We invite all personnel engaged in research on FD, MAS or Cherubism to:
· keep the FD Foundation appraised of their need for research subjects
· provide the FD Foundation with PDF of publications for inclusion in the website Library
We invite clinicians with expertise in treating FD, MAS and Cherubism to complete a referral form and submit relevant support information in order to be listed in the Physician Referral database: PHYSICIAN REFERRAL FORM
FUNDRAISING
Like all nonprofit organizations the Fibrous Dysplasia Foundation relies on the generosity of donors. We seek individuals to
· raise money directly from others through letters, races, dinners, and so forth.
· solicit funds from their employers through matching gifts.
· solicit in kind contributions to cover the costs of conferences and duplication of brochures.
· write grants to corporations and foundations for the purposes of building the FD Foundation’s capacity.
· write grants to corporations and foundations for the purposes of funding research.
To learn fundraising click FD FOUNDATION FUND RAISING GUIDE 2009
To volunteer for grant writing or corporate outreach, please send a message to info@fibrousdysplasia.org and explain your capabilities and interests.
ADVOCACY
We seek individuals to involve themselves in ongoing letter writing campaigns, opportunities to testify before legislative bodies, and other outreach to
· educate federal and state officials
· educate medical specialists who are most likely to confront individuals with FD, MAS and Cherubism about resources and research based treatment standards
· educate corporations that create and manufacture devices and medications used by persons with Fibrous Dysplasia, McCune-Albright Syndrome and Cherubism about the continued need for such items
We see individuals interested in monitoring current legislative activity.
Click on https://www.fibrousdysplasia.org/index.php?page=39 to learn about current efforts in which you can become involved.
WRITING
We seek individuals to
· assist in the preparation of a quarterly newsletter for the membership. One individual with strong formatting capabilities is needed. Multiple writers are desired. Teens should apply.
· read and summarize medical articles for our library.
· draft press releases about FD Foundation functions.
· write grants to corporations and foundations.
To volunteer please send a message to info@fibrousdysplasia.org and explain your capabilities and interests.
CONFERENCE ORGANIZATION
Once the Board of Directors selects a conference site, we seek individuals to take responsibility to:
· maintain registration and meal purchase records so that the appropriate number of folders, schedules, badges, maps, pads, pens, etc. are purchased and catering services provide adequate food and drink.
· identify modestly priced lodging and restaurants options for attendees and to compile this information with directions to the conference site via mass transit and by car.
· purchase name badges and stuff the appropriate number of folders with schedules , maps, pens, pads, etc and deliver them to the conference site.
· coordinator room sharing arrangements among attendees to keep the cost of lodging low.
To volunteer please send a message to info@fibrousdysplasia.org and explain your capabilities and interests.
INTERNATIONAL OUTREACH
The FD Foundation is a worldwide organization in so far as people outside the US join and serve as liaisons. If live outside the US and are involved in a local FD, MAS or Cherubism related organization or are willing to serve as a hub of communication in your nation please let us know by sending a message to info@fibrousdysplasia.org.
