NMF volunteers are the Heart of the National Marfan Foundation. Volunteers carry out the NMF’s mission of education, research, support and advocacy, at the local level. Volunteer trainings are offered throughout the year and staff advisors are always available to volunteers for consultation and support. VOLUNTEER APPLICATION If you are interested in becoming an NMF volunteer, please complete the NMF Volunteer Application and The Manager of Volunteer Development will contact you. Thank you for your interest in volunteering and your commitment to the cause. GROUP LEADERSHIP VOLUNTEER OPPORTUNITIES
- Network Group Chair
Local Network Groups provide informal support and organize education and awareness events, social events, and fundraisers. As a Network Group Chair you would be responsible for organizing group meetings, communicating with all group members and would act as the group’s liaison to the NMF staff. This volunteer position can be filled by a single Chair or by two Co-Chairs who divide up the responsibilities. Full Job Description - Support Group Leader
Support Groups meet solely for psychosocial purposes and provide formal in-depth emotional support. Meetings are run more like a group counseling sessions. Support Groups can be organized as a function of a Chapter or Network Group or can operate as stand-alone groups. The NMF highly recommends that qualified volunteer professionals (social workers, psychologists, etc.) lead Support Groups. However, other volunteers can organize the group, find a qualified leader, and act as the NMF’s liaison to the group. Full Job Description
INDIVIDUAL VOLUNTEER OPPORTUNITIES Telephone Support Contact
Telephone support contacts provide one-to-one peer support to individuals and family members living with Marfan syndrome or a related disorder in their home state. Telephone support contacts provide support via phone and email and must be willing to publicize either their home phone number or email address on the NMF’s website. Specialized training is offered quarterly via teleconference and is required to be a Telephone Support Contact. Full Job Description - Local Fundraiser Organizer
Plan an event in your community to raise funds needed to sustain and develop lifesaving NMF programs. Be creative and design your own fundraiser, or ask the NMF staff for ideas with proven results. We have ideas for all ages and of all sizes and will find the perfect fundraiser for you. Full Job Description - Emergency Medicine Campaign Volunteer
Help the NMF get this lifesaving information into local hospitals and learn if your local hospitals, are prepared to care for you in an emergency-all at the same time. This job entails contacting local hospitals and completing the NMF’s Hospital Interview form. Then, you would provide the NMF with contacts you’ve acquired through this process, so that we can follow up and continue to provide new information as it becomes available. Emergency Medicine Campaign resources, provided to medical personnel, currently include a power point presentation, a Continuing Medical Education (CME) DVD, and a number of educational publications that help emergency personnel to consider aortic dissection in their diagnosis and respond quickly and effectively in the event of an aortic dissection. Full Job Description - Sports and Physical Activity Campaign Volunteer
Promote proper screening of middle and high school athletes by disseminating important information about Marfan syndrome and related disorders to local school officials, nurses, athletic directors and coaches. Advocate, as necessary, for improvements in your school district’s policy regarding pre-participation physical exams. Full Job Description - Medical Exhibit Booth Volunteer
Each year the NMF exhibits at pertinent medical conferences around the country such as the American Heart Association, American College of Cardiologists, National Society of Genetic Counselors, and Emergency Nurses Conferences. The NMF Staff needs volunteers to staff the NMF booth with them and help disseminate educational materials and share personal stories. Please note: conferences tend to take place in larger cities. Full Job Description - Media Spokesperson
You can help educate the public about Marfan syndrome and related disorders by becoming a media spokesperson. If you are willing to be interviewed for television segments and/or newspaper articles, this volunteer job is for you. Full Job Description - Local Publicity Volunteer
Help raise awareness by working with the NMF’s Communications Director and local media. NMF members can be highly effective at arranging articles and television segments about Marfan syndrome and related disorders. Full Job Description - Congressional Advocate
You can make a lasting difference in the quality of life for individuals and families living with Marfan syndrome and related disorders by advocating for improved health care policies and educating your legislators about living with a chronic health condition. Full Job Description - Tall Clubs International (TCI) Liaison
The NMF is the official charity of TCI, a “lifesaving partnership” since 1989. TCI liaisons must be a member or become a member of their local TCI club and the NMF. Liaisons represent the NMF at TCI meetings sharing news and events and assisting with Tall Club fundraisers. Full Job Description - National Conference Volunteer
The success of the NMF Annual National Conference depends on an effective partnership between staff and volunteers, especially members who live in the hosting city. Various positions are available to make this a successful event. Full Job Description
Contact the NMF Manager of Volunteer Development
To contact the Manager of Volunteer Development, call 1-800-8-MARFAN ext. 11 or email volunteer@marfan.org.
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