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Mandela was 'down' with Down syndrome

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Nelson Mandela fought against apartheid and stood up for civil rights and Down syndrome. Following his recent death, photos of Mandela and a young African boy with Down syndrome surfaced in the DS world and on social sites. Historically, African families abandoned their children with Down syndrome, considered cursed and an embarrassment, many left to die. As rare as Mandela's life, it's even more rare for people of color with DS to be portrayed in the media, public relation materials, movies or commercials. Down syndrome does not discriminate whereas it affects all races, countries and nationalities at the same rate, one in 800. The media's exclusion of people of color with DS is considered not due to racism, but more about unawareness.

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Jamie Foxx often escorts his sister with Down syndrome, DeOndra, 29, to public functions. She served as the 2011 Ambassador for the Global DS Foundation.

“The love a person with special needs gives you is unfiltered,” said Foxx, People magazine.

On Yahoo Answers, C G asked, “Do African Americans get Down syndrome too? Of all the media reports on Down syndrome, I only see white people who have this problem. What is the deal with that”?

Similar questions and comments are too numerous on the internet.

An African American mother of a child with DS spoke of her experience with an Oriental owner of a beauty supply store in East Cleveland, a city in Ohio, black as Ivory soap is pure. The owner noticed the child and waved for the mother to come to the back where her own child with DS worked. The mothers lovingly shared a warm, knowledgeable smile, a rarity. The AA mother also talked about similar experiences with an Amish mother and an Hispanic mother of children with DS. She said language barriers or race doesn't inhibit communication between loved ones of persons with DS.

Rarely, African Americans attend DS events or programs while those in attendance complain, 'we ( blacks) just don't come out.' Unknown factors include transportation issues, financial need or lack of information.

Dr. Harpold, Down Syndrome Research and Treatment Foundation chief scientific officer, spoke at Carolina Medical Center in regards to cognition and early dementia in individuals with DS. He said Caucasians with DS life expectancy rate is twice that of minorities and engagement of the minority community could assist to resolve unawareness issues and involvement.

“The good news is people with Down syndrome are living longer. The expected age used to be around 21, now they're living until around 60. But, that's only for Caucasians, not minorities whose rate is around 30 years. We don't know if it's due to medical availability, environmental issues or cultural, but it's something we need to look into,” said Dr. Harpold.

The International Down Syndrome Coalition, Diane Grover, founder, president and mother of a daughter with Down syndrome, partnered with the Great Wolf Lodge Resorts to host a Kick-Off to World Down Syndrome Day, March 7-9, at all 12 locations, including Concord, NC and in these states; OH, MA, WA, TX, KS, PA, MI,VA, WI and Niagara Falls Canada. WDSD, celebrated on March 21, coincides with the extra copy of chromosome 21, non-DS persons have two, thus 3/21. A Meet-Up Pizza Party hosted by Great Wolf, March 8, tickets $10 until February 25, where everyone is welcome, even without Resort reservations, provides an opportunity for engagement.

“Diane's passion is so contagious. This is something that is near and dear to my heart,” said Rhonda Khabir, Great Wolf corporate director of group sales. “ We offer a safe, affordable and comfortable atmosphere for everybody. Great Wolf is a great match for families of loved ones with Down syndrome. It's a natural, wholesome fit, that special connector.”

DSRTF 2014 Race for Research: Accelerating Down syndrome cognition research, a weekend road rally, June 16 to 18, begins at Winston Salem's Bowman Gray Speedway and ends at Charlotte's NASCAR Hall of Fame. The goal to raise $50,000 for improving learning, memory and speech for individuals with DS can be accomplished through sponsorships, donations and participant team fees, anyone can participate. David Ragan, NASCAR driver and brother of Adam, with DS and the National Ambassador, co-chairs the Race with wife, Jacquelyn.

“The sky is the limit for them (people with DS) if they get the proper help,” said Ragan, The Goshem News.

DSTRF selected Dhahran 'Dude', Charlotte African American with Down syndrome and Cleveland native, a Race Ambassador. Carolyn Cronin, executive director, desired to reflect the inclusion and diversity of DS. Dude will celebrate his 23rd birthday at Concord's Great Wolf on March 8th. The only colors that matter in the DS world are blue and yellow, the official colors of DS.

“Now, maybe the world doesn't see you, and maybe they don't understand, just 'cause you don't see the footprints, don't mean they're not in the sand,” lyrics from song, Love Brings Change, Foxx serenaded to teary-eyed DeOndra.

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