Tools and resources you can use as an individual volunteer or group leader.

General Volunteer Tools/Resources:

Volunteer Registration form. The form to complete to become a volunteer.

Community Support Volunteer Tools:

Community Support Volunteer Questionnaire - a questionnaire specifically for new Community Support Contact volunteers to complete.

Community Support Volunteer Orientation Manual - a comprehensive manual specifically for Community Support Contact volunteers.

Awareness Tools/Projects:

Awareness Table Guide and Toolkit- "Tell the Worls About Marfan," a step by step guide to planning an awareness table at a health fair, school, library, church, or other community setting. The guide includes a form to request a tool kit the NMF will send you with everything you will need to ha organize a successful awareness event.

Adopt-A-School Project- The Adopt-A-School Project is designed to raise awareness about Marfan syndrome and related disorders in our schools—among teachers, principals, coaches, school nurses, other faculty and staff, students and their families. The goal is twofold: to help identify children who have Marfan syndrome so they can get the care they need; and to ensure that these children receive the necessary accommodations to perform at their best.

In My Hands (Documentary) Volunteer Projects Guide- The documentary film, In My Hands: A Story of Marfan Syndrome, was released in 2009 to wide acclaim, winning awards and bringing attention to Marfan syndrome among new audiences. The movie tells the inspirational story of several children and adults affected by Marfan syndrome, the challenges they face, and their efforts to form a youth dance troupe. In My Hands is an ideal vehicle for NMF volunteers interested both in providing support among local Marfan communities and raising awareness of Marfan syndrome beyond these communities.This guide outlines three projects you can implement using In My Hands, Show and Talk, Show and Tell, and Show the Pros.

RENT Awareness Campaign Guide- Community theater companies and high school drama departments regularly stage the award-winning musical RENT all over the country. As an NMF volunteer, you know that Jonathan Larson, the creator of RENT, died of an aortic dissection, and his story presents a unique opportunity to raise awareness of Marfan syndrome and related disorders. Now the NMF has produced this guide to help you join forces with a local production of RENT and raise awareness in your community. Check out our RENT Awareness Campaign Guide and see if it's a project you'd like to take on.

Volunteer Social Media Toolkit for National Marfan Awareness Month, February 2013

Print Public Service Announcement (PSA) Placement Project - provides ready-to-use advertisements for you to take to your local print media outlets.  Great for school or company newsletters, newspapers, and magazines.

Marfan Syndrome Public Awareness Flyer Project - everything you need for a simple public awareness activity to draw attention to Marfan syndrome or your local group through community bulletin boards in your local retail stores

Basketball Poster - public awareness poster (printable on legal paper) highlighting the physical features of Marfan syndrome and urging recognition of these features in athletes

Marfan Memorial Quilt Project - guidelines for submitting a block for the Marfan Memorial quilt remembering loved ones lost to Marfan syndrome

Fundraising Tools/Projects:

Activities Guide - provides fun and exciting ideas to help you plan your very own events or activities

How To Raise $100 Fast - A step by step guide to raising $100 that's quick and easy.

Fundraising Ideas From A to Z - Looking for quick and fundraising ideas. This resource provides you with a fundraising idea for every letter of the alaphabet. Whether you want to raise $100 or $10,000 there a fundraiser for you in this resource.

12 Tips to Fundraising Success - Learn the 12 most important tips to organizing any fundraiser.

Create an Online Fundraising Page (non-event) - You can organize a fundraiser without leaving the comfort of your own home. An online fundraising page is a great way to raise funds if you don't have the time, energy or man power to organize an actual event. It only takes a few minutes to create your online fundraising page. Then you simply email friends and family the link to your page and watch the funds grow. People often use an online fundraising page to ask friends and family to donate in lieu of a gift for birthdays and other occasions. Create a non-event today.

Local Fundraising Event Proposal Form - The form you will need to submit to the NMF if you are planning a fundraiser.

Proposed Budget Form - A secondary form you will need to submit to the NMF is you are planning a fundraiser.

Support Focused Tools/Resources:

In My Hands, Documentary, Discussion Guide - A guide that can be used for volunteer groups and/or families to watch the film and have a meaningful group/family discussion afterwards.

Emergency Focused Tools/Resources:

Hospital Interview Form -  a simple tool to help you "interview" your local hospital to determine if they have adequate resources to be able to properly diagnose and manage aortic emergencies.

Emergency Information Packet - A packet you complete to ensure emergency medical professionals have the information they would need about you in the event of an emergency. This can be completed individually or a a volunter group activity. Chapters and Network groups could sponsor a Emergency Preparedness Day where group members get together and complete the packet together. Groups can also consider havinfg an emergency professional come and speak.

Post meetings and events you are organizing and follow the NMF on:

It's a great way to to get new and more people involved in community activities!

Have a suggestion? Have an idea and don't know how to get started? Need more ideas? We're here to help! Contact the Manager of Volunteer Development at volunteer@marfan.org.