NMF NATIONAL VOLUNTEER NETWORK VOLUNTEER JOB DESCRIPTION

Job Title: Advocacy Volunteer

Reports to:  Josephine Grima, Ph.D., V.P. Research & Legislative Affairs
516-883-8712 x 117 or jgrima@marfan.org

Time commitment/frequency:  January – May.  Flexible hours vary from 30 minutes to several days, depending on the amount of time you have. 

Location:  Work from home.  Possible travel to district office, and possible travel to Washington, D.C., depending on the commitment you make.

Goals and Objectives of this job:  Let your elected officials know about Marfan syndrome.

Type of work:  Educate congressional leaders about Marfan syndrome.  Tell your story and how Marfan syndrome has affected your life.

Volunteer skills/attributes needed:  Strong communication skills; live in a state with members on the Appropriations Subcommittee (changes yearly). 

Benefits to the volunteer:  Develop a greater relationship with your congressional leaders; advocate for changes that will really make a difference for people affected with Marfan syndrome and the broader network of health concerns.

Description of responsibilities and related tasks:

• Contact legislators by phone, fax or e-mail
• Arrange for group of individuals to make a district office visit to advocate for Marfan syndrome research and other important issues.
• Participate in Capitol Hill Day 1- 2 days usually in March in Washington DC.
• Always inform NMF V.P. of Research & Legislative Affairs of contact.

Special training required:
A brief training session with NMF Research Director to learn tips on telling your story and how congress can help.

Related policies and/or procedures, including evaluation procedure:

Evaluation procedures for visit:

Inform V.P. of Research and Legislative Affairs of the following:

• Determine how visit went?  Was aide helpful, receptive?  Did aide commit to request?
• Follow-up procedures with aide:  Was a relationship established?  Did volunteer follow-up with aide?  Was thank you letter sent?

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.

______________________________  ________________________
Volunteer’s signature                  Date
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Print name                                 Phone
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Street address                            Email
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City, state, zip code

Please print and return to:National Marfan Foundation
Attention: Manager of Volunteer Development
22 Manhasset Avenue
Port Washington, NY 11050