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WE ARE A TEAM OF VOLUNTEERS!
WE NEED YOUR ASSISTANCE!
PLEASE GET INVOLVED.
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RESEARCHERS AND CLINICIANS
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Help us foster your research.
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We invite all personnel engaged in research on FD, MAS or Cherubism to:
♦ keep the FD Foundation appraised of your need for research subjects
♦ provide the FD Foundation with PDF of publications for inclusion in the website Library
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| Help patients and GPs find your clinical expertise. |
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We invite all clinicians with expertise in treating FD, MAS and Cherubism to complete a Physician Referral Application and submit relevant support information in order to be listed in the Physician Referral database.
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| Join a FD Foundation council. |
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We invite clinicians with particular interest in greater involvement in the FD Foundation to consider membership on the Medical Advisory Council (MAC). The MAC 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. To nominate yourself or someone else, please send a message to info@fibrousdysplasia.org and explain your capabilities and interests.
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We invite clinicans and researchers with particular interest in greater involvement in the FD Foundation to consider membership on the Scientific Advisory Council (SAC). The SAC assists the Board of Directors with evaluating proposals for research funds and many members serve on the working group for the GRDR Patient Registry. To nominate yourself or someone else please send a message to info@fibrousdysplasia.org and explain your capabilities and interests.
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| PATIENTS, FAMILY MEMBERS AND SUPPORTERS |
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2013 Conference Organization
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The Foundation needs help to organize the 2013 Patient and Family Conference. The Board of Directors seeks three volunteers: a Conference Coordinator, a Conference Administrator, and a Conference Host. (Past volunteers are happy to share their information with you.)
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| ♦ a volunteer Conference Coordinator is needed to work with the Board President to assess possible meeting venues, developing a contract with the selected hotel for meeting space, rooms for presenters and reduced conference prices for attendees. The cordinator will also 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. The Coordinator's air travel to the conference and lodging (shared room) will be funded by the FD Foundation. her or his registration fee will be waived. However, she or he does not need to attend the conference. |
| ♦ a Conference Administrator is needed to work with the Conference Coordinator to create conference advertising materials for the FD Foundation website and with the Board Secretary 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 for attendees. The Coordinator's air travel to the conference and lodging (shared room) will be funded by the FD Foundation. Her or his registration fee will be waived. |
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♦ An on site Conference Host is desired as well (if the Coordinator does not live near the conference venue) to purchase name badges and stuff the appropriate number of folders with schedules , maps, pens, pads, etc and deliver them to the conference site. She or he will assist the Board President in working with the hotel administration and staff to ensure the needs of presenters and participants are met. The Conference host is expected to live locally. Her or his travel (presumed to be via automobile) will be covered and her or his registration fee will be waived.
To volunteer please send a message to info@fibrousdysplasia.org and explain your capabilities and interests.
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Independent Fundraising
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Like all nonprofit organizations the Fibrous Dysplasia Foundation relies on the generosity of donors. We seek assistance to
♦ raise funds directly through letter writing to family and friends
♦ create fundraising events: rides, walks, swims, races, dinners, etc.
♦ solicit funds from their employers matching gift programs.
♦ solicit in kind contributions to cover the costs of conferences and duplication of brochures.
To learn more about fundraising click FD FOUNDATION FUND RAISING GUIDE 2009. To talk to someone about starting a project, please send a message to info@fibrousdysplasia.org and explain your capabilities and interests.
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| Community Building |
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The FD Foundation seeks volunteers to help create opportunities for patients and caregivers to meet and develop extended support systems. Events can be as simple as meeting at a predetermined location (the zoo, a restaurant, a park) or more elaborate (such as potluck meal at someone's home). To talk to someone about initiating an activity, please send a message to info@fibrousdysplasia.org and explain where you live and what you would like to do. The FD Foundation can identify how many individuals live nearby you and send out a invitation for you.
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Annual Campaign Support
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The FD Foundation seeks volunteers to help prepare and mail annual appeal letters. This would be best accomplished by someone living near Washington DC or Baltimore, MD.
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Advocacy
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♦ The FD Foundation has an affiliation with the National Organization for Rare Disorders (NORD) and the Kakkis Everyday Life Foundation. These advocacy groups follow legislation and seek to involve rare disease groups and their members in increasing our access to reseach funds, speeding up clinical trials, and shaping FDA policy. The FD Foundation needs a volunteer to monitor emails coming from these organizations and develop press releases that can be posted on this website or released as a blog.
♦ The FD Foundation seeks patients and caregivers willing to testify before legislative bodies or speak to the media.
Visit our Advocacy page to learn more.
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Communication
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We seek individuals to write
♦ short profiles of unique FD foundation members for the website.
♦ read and summarize medical research for our research library.
To volunteer please send a message to info@fibrousdysplasia.org and explain your capabilities and interests.
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Organizational Development
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♦ We seek individuals to help research potential funding sources and assist with grant writing. To volunteer please send a message to info@fibrousdysplasia.org and explain your capabilities and interests.
♦ 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. We seek adult patients, caregivers or medical personnel to serve in this capacity. To nominate yourself or someone else: BOARD MEMBER NOMINATION FORM
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International Outreach
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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.
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Updated 10/29/2012.
Please report problems with this page to info@fibrousdysplasia.org.
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