NMF National Volunteer Network Job Description

Job Title: Local Network Group Leader

Staff Liaison:  Kathy Jeffers, Manager of Volunteer Development
   Phone: 800-862-7326 ext. 11 Email: kjeffers@marfan.org

Purpose: 
The first purpose of a local Network Group is to enable NMF members to meet each other and gather in their own communities.  Network Groups can foster local efforts to further the NMF mission to offer education on successful management of Marfan syndrome and related disorders, support for affected persons and their families, and promote public and professional awareness.  Network Groups are also encouraged to do important fundraising to support NMF programs and to help send group representatives to the NMF National Conference.
 
Time commitment/frequency: 
Network Groups meet as frequently as needed to accomplish the goals of its members.  This can vary according to the direction taken by the developing local network group.  Initially, it would require setting up the physical space for the first meeting and providing refreshments (or arranging pot luck). 

Description of responsibilities and related tasks:

• Network Group leaders and participants must be NMF members.  Scholarships for NMF annual dues are available upon request.
• The main purpose is that everyone will feel a local connection to the NMF.  With 25,000 members nationwide, nobody should feel isolated.  We want to encourage sociability, sharing helpful resources, and all that grows from the spirit of a caring community.
• Be able to act on your interest in pulling NMF members in your area together by providing a place to meet and refreshments (reimbursable by the NMF for the first meeting).  Some groups decide to meet every month or two, some quarterly.  Some only want to share contact information and be able to call or email each other.
• If the group decides they would like to meet on a regular basis and you do not want to host each time, subsequent locations can be identified by members either offering their homes, or finding alternate meeting places at no cost.  
• There should be at least one or two people who are willing to lead the group and take responsibility for convening meetings.  Shared leadership is strongly encouraged. 
  The NMF will send out invitations to the first three meetings to all NMF members in our data base who live in your area.  Then it is expected that the group will take responsibility for contacting people who want to participate in ongoing activities. E-mail communications are strongly encouraged. The NMF will reimburse for postage and copying as necessary.  The NMF staff is always available to help guide leaders in Network Group organization and activities.
• Ongoing activities can vary according to the interest of the group – from being purely social, targeted for specific member interests or age groups, or special activities to promote our common cause.  Many groups are energized by focusing on NMF model programs in education and awareness that can be implemented at the local level, or fundraising to support NMF programs and research. 
• A Local Network Group is the first level of NMF community gathering.  As the group bonds and grows in their interests and activities, it may be appropriate to add an official support function (a Support Group), or to become a Chapter.
• If members wish to offer Support Group meetings for psycho-social support, we strongly recommend finding a professional, volunteer facilitator, who is experienced in running this type of meeting.  The NMF Director of Support Services, can help identify resources.
• Becoming a chapter is an advantage that allows for a local bank account, more local control over finances, a formally established structure for volunteer responsibilities, and an officially recognized presence in your community that boosts standing and significantly increases capacity for fundraising.  Cathie Tsuchiya, Administrative Director, will assist the group through this stage.

Special Training required:

• Network Group leaders are asked to carefully review the Network Group Guidelines and Meeting Planning Materials that are sent prior to your first meeting, and to engage in an Orientation Training session with the NMF Manager of Volunteer Development.  An NMF Lending Library will be sent prior to your second meeting, and a leader’s Resource Book prior to your third meeting.  The Lending Library consists of videos and publications produced by the NMF that can be used for meetings, or borrowed and returned by group members.
• Leaders are also expected to have basic, accurate understanding of the Marfan syndrome diagnosis and management as outlined in the “Blue Book”. 
• Training sessions for group leaders will be provided at the Annual National Conference and through conference calls in the winter and fall. 

Related policies and/or procedures, including evaluation procedure:
Policies/ procedures are explained in the Volunteer Manual and Resource Book.

The NMF office will distribute surveys or evaluation forms at appropriate times.  It is part of the volunteer commitment to return these forms as requested.

______________________________  Date________________________
Volunteer’s signature
______________________________  Phone: ______________________
Print name
______________________________  E-mail: ______________________
Street address
______________________________  Fax: ________________________
City, state, zip code

Please print and mail or fax to:

National Marfan Foundation
Attention: Manager of Volunteer Development
22 Manhasset Avenue
Port Washington, NY 11050
Fax: 516-883-8040