Activities can be done by an individual, a family, or a group of friends. They can include health fairs, bake sales, garage sales, penny drives, and presentations to local medical school students. We’ll share ideas with you and arrange for meetings where team members can share ideas with each other, discuss successes, and help each other plan for the future. We can help you tap into others in the Marfan and related conditions community to get involved. You can also encourage your friends, family members, co-workers, and neighbors to make your event a success.
Please contact us at volunteer@marfan.org for assistance.
Awareness Projects
Volunteers can raise awareness of Marfan syndrome and related conditions in many ways. Early diagnosis is key and the more people know the signs, the greater the opportunity we have to save lives. Awareness projects come in all shapes and sizes. They are conducted by individuals, family groups, and companies.
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School Nurse Conferences
School nurses are at the front line of health for our nation’s children. Every state has a school nurses association that holds a one to two day annual meeting featuring vendor exhibits. This is a great opportunity to ensure that school nurses in your state know the signs of Marfan and related conditions and the special considerations for affected children in their school. We can provide the exhibit fee and send you materials for distribution (informational brochure, fact sheets, swag). Please contact us at volunteer@marfan.org if you are interested.
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Awareness Tables
Creating an awareness table and giving out information about Marfan syndrome and related conditions is a great way to educate the public about these conditions and potentially save a life. The Foundation can provide you with materials to distribute, including fact sheets and swag. You may also want to decorate with balloons, if they are permitted, to attract attention.
Sometimes, places in the community – such as a library, hospital, or mall – have health fairs where it is free or low-cost for a nonprofit to exhibit. They will have an agreement to be completed as well as set-up logistics to follow. Please let us know as we need to sign all legal papers.
You may also be able to set up an awareness table in a location where you have a personal connections, such as your workplace, your child’s school, your local library, your doctor’s office, or your local hospital.
Please contact us at volunteer@marfan.org about your plans and we can provide materials.
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Social Media
Awareness of Marfan syndrome and related conditions leads to early diagnosis, treatment, and an extended lifespan. The most powerful way we can raise awareness is through you, our volunteers. Your circles of relatives, friends, co-workers, and neighbors, your knowledge, your personal journey, and your commitment cannot be matched by anyone outside of our community.
Sharing information on social media is easy because you can do it from the comfort of your own home. In addition to sharing information from our Facebook, Twitter, and Instagram, you can create your own posts and tweets to increase awareness. Remember to tag The Marfan Foundation (on Twitter: @marfanfdn; on Instagram: @themarfanfoundation; on Facebook @TheMarfanFoundation) and use #marfan. Want to join our social media team of volunteers?
Email us at brandcoms@marfan.org.
Marfan Awareness Month
February is Marfan Awareness Month and you can do your part from the comfort of your own home on social media. In addition to sharing information from our Facebook, Twitter, and Instagram, you can create your own posts and tweets to increase awareness. We invite you to join in promoting #MarfanAwareness during February!