LOCAL SUPPORT
NMFConnect is a social network created by the National Marfan Foundation that is similar to other social networking websites such as Facebook and Twitter. NMFConnect creates a worldwide support group for people living with Marfan syndrome and similar disorders to discuss and share experiences, as well as create a sense of community.
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MDJunction is a network of online support groups for various health issues and disabilities. The specific section linked here allows people from around the world to communicate and share experiences living with Marfan syndrome and related disorders.
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The International Federation of Marfan Syndrome Organizations has been in existence for 22 years, created to share accurate research and information about Marfan syndrome worldwide, and link together various researchers, educators, and people living with Marfan syndrome from around the world.
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The Marfan Foundation provides a service on their website that helps connect people to local community groups for Marfan syndrome. Once the form has been filled out, the Marfan Foundation will contact you with information regarding local support groups and community awareness events. Because Marfan syndrome is a lesser-known disorder, it is often difficult to locate local support groups in certain areas.
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EDUCATIONAL CONFERENCES
The Annual Family Conference hosted by The Marfan Foundation (August 6-9, 2015) in Chicago.
Here, people living with Marfan syndrome can learn from medical experts, listen to the latest research on Marfan syndrome, and connect with other people sharing the same experience. The conference specializes in "programs and workshops for people of every age" and also offers "attendees free medical assessments" from leading doctor's on Marfan syndrome and related disorders (The Marfan Foundation, 2014).
Here, people living with Marfan syndrome can learn from medical experts, listen to the latest research on Marfan syndrome, and connect with other people sharing the same experience. The conference specializes in "programs and workshops for people of every age" and also offers "attendees free medical assessments" from leading doctor's on Marfan syndrome and related disorders (The Marfan Foundation, 2014).
Northern California Chapter Educational Seminar (August 16, 2014) in Stanford, CA.
Dr. Hadas Shiran is an Instructor of Medicine in the Division of Cardiovascular Medicine at Stanford University, and is "the Principal Investigator on a Marfan Foundation Early Investigator Research Grant" (apa, cite, ya). On August 16th, at the Stanford Hospital - Li Ka Shing Learning and Knowledge Center, Dr. Shiran will hold an educational seminar on Imaging the Aorta (The Marfan Foundation, 2014).
Dr. Hadas Shiran is an Instructor of Medicine in the Division of Cardiovascular Medicine at Stanford University, and is "the Principal Investigator on a Marfan Foundation Early Investigator Research Grant" (apa, cite, ya). On August 16th, at the Stanford Hospital - Li Ka Shing Learning and Knowledge Center, Dr. Shiran will hold an educational seminar on Imaging the Aorta (The Marfan Foundation, 2014).
5th Annual New England Marfan Syndrome and Connective Tissue Disorders Symposium (September 13, 2014) in Manchester, NH
A one-day educational conference on Marfan syndrome and related disorders is being held in Manchester, NH, with keynote speakers Dr. Hal Dietz and Dr. Brad Tinkle are speaking on topics such as "Marfan syndrome, Loeys-Dietz syndrome, Ehlers-Danlos syndrome, pain management, growing older with connective tissue disorders, perparing for surgery, applying for Social Security Disability, genetic testing, and more" (The Marfan Foundation, 2014).
A one-day educational conference on Marfan syndrome and related disorders is being held in Manchester, NH, with keynote speakers Dr. Hal Dietz and Dr. Brad Tinkle are speaking on topics such as "Marfan syndrome, Loeys-Dietz syndrome, Ehlers-Danlos syndrome, pain management, growing older with connective tissue disorders, perparing for surgery, applying for Social Security Disability, genetic testing, and more" (The Marfan Foundation, 2014).
RECREATIONAL ACTIVITIES & COMMUNITY RESOURCES
The Marfan Foundation has created a document called "Physical Activity Guidelines" for individuals living with Marfan syndrome. The Marfan Foundation states that "physical activity should be modified to help eliminate undue stress on the aorta, avoid chest or eye trauma, and avoid potential damage to loose ligaments or joints" (The Marfan Foundation, 2014). The Marfan Foundation's "Physical Activity Guidelines" can be found by clicking the picture, or clicking here (this will automatically download a *.PDF file of the "Physical Activity Guidelines" document. |
The Marfan Foundation has a series of nationwide walk programs that focus "on community" and enjoyable fundraising (The Marfan Foundation). The walk, called a Walk For Victory allows for individuals to create or join a team and walk leisurely with friends and family from the community to raise money for Marfan syndrome research and related disorders. Currently, the walks in 2014 are completed, but the Marfan Foundation is in the process of planning the Spring 2015 walk schedule. |
In addition to A Walk for Victory the Marfan Foundation has created an endurance program entitled Team Victory that focuses on marathons and relay races to raise funds for Marfan syndrome and related disorder research. Individuals raise funds by participating in various marathons and bike tours around the United States. For more information on Team Victory click the image above, or follow the link here. |
The Marfan Foundation website has an official community calendar that highlights events around the United States (and sometimes other countries, such as Puerto Rico) within the Marfan syndrome community. Since the amount of support groups and local communities are few and far between, having a calendar that collectively provides information on all upcoming events around the country is extremely useful. |
FEATURED SOCIAL & RECREATIONAL EVENTS
These events (and more) can also be found on the official community calendar, which is described above.
August 9 - Potluck Picnic and Outdoor Activities - The Northern Illinois Chapter of the Marfan Foundation is hosting a potluck picnic with outdoor family activities and general recreation for those in the community.
Location:
Community Park Pavillion
26401 Grande Park Blvd.
Plainfield, IL 60585
August 16 - Meet us at Panera Bread - Papillion, NE - A local meeting for community members living with Marfan syndrome and related disorders. Community members can share information and discuss ideas, as well as socialize with others.
Location:
Panera Bread
8650 S. 71 St
Papillion, NE 68133
August 16 - Alabama Chapter Meeting - The Birmingham Community Group is celebrating it's transformation into the Alabama Chapter of the Marfan Foundation. This is an opportunity for community members to share ideas and celebrate chapter status.
Location:
Taziki's Mediterranean Cafe
1820 Gadsen Highway
Birmingham, AL 35253
(The Marfan Foundation, 2014).
August 9 - Potluck Picnic and Outdoor Activities - The Northern Illinois Chapter of the Marfan Foundation is hosting a potluck picnic with outdoor family activities and general recreation for those in the community.
Location:
Community Park Pavillion
26401 Grande Park Blvd.
Plainfield, IL 60585
August 16 - Meet us at Panera Bread - Papillion, NE - A local meeting for community members living with Marfan syndrome and related disorders. Community members can share information and discuss ideas, as well as socialize with others.
Location:
Panera Bread
8650 S. 71 St
Papillion, NE 68133
August 16 - Alabama Chapter Meeting - The Birmingham Community Group is celebrating it's transformation into the Alabama Chapter of the Marfan Foundation. This is an opportunity for community members to share ideas and celebrate chapter status.
Location:
Taziki's Mediterranean Cafe
1820 Gadsen Highway
Birmingham, AL 35253
(The Marfan Foundation, 2014).
Images used on this page were retrieved from:
http://www.marfan.org
http://www.mdjunction.com
http://www.marfanworld.org
http://www.theafricanworld.tv/wp-content/uploads/2011/12/AU-Symposium-Wide-Audience.jpg
http://www.marfan.org
http://www.mdjunction.com
http://www.marfanworld.org
http://www.theafricanworld.tv/wp-content/uploads/2011/12/AU-Symposium-Wide-Audience.jpg