April 28, 2014
Dear Mr. O’Neal,
All of us at the National Foundation for Ectodermal Dysplasias (NFED) are terribly disappointed by the hurtful image that you and others recently posted on social media about a member of our family, Jahmel Binion, who is affected by ectodermal dysplasia. Individuals affected by these rare, genetic conditions often face a lifetime of bullying and negative remarks because of their appearance, which others may consider “different.” Bullying is never acceptable and we, as a nation, have had some devastating consequences as a result of bullying. However, to be called out on a celebrity’s social media and made fun of is especially reprehensible. We applaud Jahmel for reacting to this cyberbullying by establishing a positive social media campaign called “Hug Don’t Judge.”
Mr. O’Neal, we welcome this opportunity to enlighten you about the ectodermal dysplasias and how we could work together for positive change.
The ectodermal dysplasias are rare genetic conditions that affect the development of hair, teeth, skin, glands and nails in men, women and children of all races and ethnic groups. Of the more than 180 different syndromes, x-linked hypohidrotic ectodermal dysplasia (XLHED) is the most common and features multiple malformed and missing teeth, the inability to perspire, sparse hair and recurring respiratory infections. Symptoms can range from mild to severe, but in all cases present a variety of challenges.
We invite you to attend our NFED National Family Conference, July 23-26 in Columbus, Ohio, and meet families from around the world who, like Jahmel, are affected by ectodermal dysplasias. You will meet some extraordinary people who are accomplishing profound acts despite the harsh social stigmas, daunting physical challenges, and financially draining dental procedures they’re up against.
You might want to consider making something positive come from this. Consider giving Jahmel Binion the gift of a smile, one that others would not make fun of. Give him a smile that would give him confidence and pride.
We are urging our NFED community to use this opportunity to raise awareness, to make positive change, and to support Jahmel’s “Hug Don’t Judge” campaign (#hugdontjudge). We encourage you to do the same. Let’s raise awareness of the ectodermal dysplasias. Together, we have the power to make life better for the people it affects.
Beauty is diverse. Let us show you.