TCI Gives Back

Tall Clubs International is committed to giving back, and to raising awareness about issues affecting the tall community.  In addition to social activities on the local and international level, we also work hard to send a tall message to a world dominated by goods and services designed for the less vertically gifted. Awarding college scholarships to tall teens; fighting for legroom in the airline industry; and, fundraising for Marfan syndrome, are but a few examples of how TCI works hard to positively influence tall lives around the globe.

We support The Marfan Foundation because our founder, Kae Sumner-Einfeldt, had Marfan syndrome. In addition, people with Marfan syndrome are frequently tall, or at least tall for their family, so it is a perfect fit. Marfan syndrome is a genetic disorder that affects the body’s connective tissue. Connective tissue holds all the body’s cells, organs and tissue together. It also plays an important role in helping the body grow and develop properly. About 1 in 5,000 people have Marfan syndrome, including men and women of all races and ethnic groups.Every person’s experience with Marfan syndrome is slightly different. No one has every feature and people have different combinations of features. Some features of Marfan syndrome are easier to see than others. These include: long arms, legs and fingers, tall and thin body type, curved spine, chest sinks in or sticks out, flexible joints, flat feet, crowded teeth, and stretch marks on the skin that are not related to weight gain or lossHarder-to-detect signs of Marfan syndrome include heart problems, especially those related to the aorta, the large blood vessel that carries blood away from the heart to the rest of the body. Other signs can include sudden lung collapse and eye problems, including severe nearsightedness, dislocated lens, detached retina, early glaucoma, and early cataracts. Special tests are often needed to detect these features.Knowing the signs of Marfan syndrome can save lives. Medical experts estimates that nearly half the people who have Marfan syndrome don’t know it. This is something The Marfan Foundation is working hard to change.

The Marfan Foundation creates a brighter future for everyone affected by Marfan syndrome and related disorders. The Foundation:

  • * Pursues the most innovative research and make sure that it receives proper funding.
  • * Creates an informed public and educated patient community to increase early diagnosis and ensure life-saving treatment.
  • * Provides relentless support to families, caregivers, and healthcare providers.

The Foundation will not rest until it has achieved victory—a world in which everyone with Marfan syndrome or a related disorder receives a proper diagnosis, gets the necessary treatment, and lives a long and full life.

TCI’s Marfan Coordinator is David A Rasmussen (Tall Club of Milwaukee) and you can contact him here: dave@uwm.edu

For more information, contact The Marfan Foundation at 800-8-MARFAN, ext. 126, or support@marfan.org. You can learn more at http://www.marfan.org

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