Help Raise Awareness of Ectodermal Dysplasias in June

Ectodermal Dysplasia is one of many rare diseases that we see and treat at the Boston Foundation for Sight, which is why we couldn’t be happier that June is Ectodermal Dysplasias Awareness Month! The National Foundation for Ectodermal Dysplasias (NFED) invites you to help celebrate this important month with a theme of: Ectodermal Dysplasias? Don’t Sweat It! Many support and fundraising events have been organized across the country this month and the NFED encourages everyone to get involved in their own communities to educate others about ectodermal dysplasias.

The NFED promotes education, support, and research to families whose lives have been touched by ectodermal dysplasias. There are more than 150 different types of ectodermal dysplasias, which are genetic disorders that involve defects in the hair, nails, sweat glands, and teeth. These disorders are very diverse and can affect other body parts as well, including the lens of the eye, parts of the inner ear, the fingers and toes, and nerves. Symptoms can range from mild to severe. Eye involvement can include dryness of the eye, sensitivity to light, cataracts, and vision defects.

What can you do to help celebrate Ectodermal Dysplasia Awareness Month?

* Participate in or organize a “Don’t Sweat It Walk”

* Use Facebook, Twitter, or other social media to educate others and let them know about local awareness and fundraising events

* Contact your local newspaper to share your personal story about living with ectodermal dysplasia or how it has affected your family

* Order and wear your own “Don’t Sweat It” bracelets and NFED apparel throughout the month

* Organize a multi-family garage sale and donate the proceeds to NFED

* Collect “30 Days of Change” at your school or workplace

* Download the 30 Ways to Make a Difference calendar for even more ideas

No matter how you decide to participate, the NFED would like to know how you helped promote awareness, educate others, or raised funds this month. Share your results and photos with them for inclusion on their web site or next newsletter. Together, we can take the next step in NFED’s future.