Onslow and surrounding counties are big supporters of our special needs communities here in NC, despite what you hear.

There are a lot of events scheduled throughout the year for various causes and this is one of them. We’ve participated in the past and enjoy the diverse community we have here, the many ways they give back and support those in our community. To help bring more awareness to Down Syndrome and the community organizations they have invited Ellen DeGeneres to their event this year.  They have shared the invite on Ellen’s facebook page and asked others to share in order to try to get her to see it along with the hashtag #GetEvan2Ellen

In order to help I thought I’d post it here as well in hopes that you would help share this and help Evan get his invite to Ellen. I’ve posted the links to their facebook event page here.

 

 

“Good afternoon Ellen. I hope this post finds you well. I’m a Staff Sergeant in the United States Marine Corps (19 years), but more importantly the father to a son with Down Syndrome. His name is Evan and I’ve attached a picture of us eating lunch while I was on duty one day. I’m a board member and my wife is the President of our local DS group, the Down Syndrome Network of Onslow & Carteret Counties (DSNOCC). I’m writing this to request you as a guest speaker for our 5th annual Buddy Walk, which is happening on 01 October 2016 in Jacksonville, NC (home of MCB Camp Lejeune and MCAS New River). You are such a passionate person in all that you do and we would be honored as a group to have you attend and speak at our event. 93% of all money raised stays within the organization to benefit our loved ones w/ Down Syndrome, as well as their families. We are in our infancy as far as non-profits go, but we are growing every year and we are a very close-knit group. We serve about 60 families (75% military) and our members with DS range from 4 months to mid-30s. Having a celebrity like you would not only be an amazing gift to our families, but will help us bring our message of acceptance and inclusion to a whole new level. I hope you will consider my invitation and please have an amazing day. Again, thank you for all that you do.”
‪#‎GetEvan2Ellen‬

 

“Good afternoon again Ellen! It’s me again! I am again writing on behalf of Down Syndrome Network of Onslow & Carteret Counties (DSNOCC) extending an invitation to be our guest speaker for our 5th Annual Buddy Walk. Just think about it. 500-600 people will be there and that’s before your possible acceptance of our invitation. You have so many fans within our organization that would be awe-inspired to hear you speak on our behalf. Below is a picture of Ev and I finishing a race with Ainsley’s Angels. I’m the Angel and he pulls me through races of various distances (5k, 10k, 15k, half-marathon, and a full marathon in October). He’s in a chair for most of the race, but has to finish on his own. This is us at the “Hope for the Warrior 10k”. I hope to hear from you soon! The more shares the better!”
‪#‎GetEvan2Ellen‬ ‪#‎ShareThis‬ ‪#‎DownSyndrome 

 

 

Down Syndrome Network of Onslow and Carteret Counties North Carolina

5th Annual DSNOCC Buddy Walk facebook event page

 

       What is Down Syndrome?

In every cell in the human body there is a nucleus, where genetic material is stored in genes.  Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes.  Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.

This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm – although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all.

  What causes Down Syndrome?

Regardless of the type of Down syndrome a person may have, all people with Down syndrome have an extra, critical portion of chromosome 21 present in all or some of their cells.  This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

The cause of the extra full or partial chromosome is still unknown. Maternal age is the only factor that has been linked to an increased chance of having a baby with Down syndrome resulting from nondisjunction or mosaicism.  However, due to higher birth rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.

There is no definitive scientific research that indicates that Down syndrome is caused by environmental factors or the parents’ activities before or during pregnancy.

The additional partial or full copy of the 21st chromosome which causes Down syndrome can originate from either the father or the mother. Approximately 5% of the cases have been traced to the father.

 

Resources

•Brighter Tomorrows
http://www.brightertomorrows.org/
Brighter Tomorrows is a web-based resource for parents who have received a diagnosis of Down Syndrome either prenatally or at birth. The site provides answers to common questions, educates about Down Syndrome and shares the stories of other parents with similar situations.

•Down Syndrome Pregnancy
http://www.downsyndromepregnancy.org/
This site provides information and support to expectant parents preparing for the birth of a baby with Down Syndrome.

•International Mosaic Down Syndrome Association
http://www.imdsa.org/
Offers support and resources to families of and individuals with mosaic Down syndrome through the lifespan.

•Medline Plus: Health Topics – Down Syndrome
www.nlm.nih.gov/medlineplus/downsyndrome.html
An overview and list of resources on Down syndrome and prenatal testing from Medline Plus, a service of the US National Library of Medicine and the National Institutes of Health

•National Society of Genetic Counselors
http://www.nsgc.org/
Find members of NSGC through the Find A Genetic Counselor search function

•Understanding a Down Syndrome Diagnosis
http://www.lettercase.org/
Understanding a Down Syndrome Diagnosis is an accurate, balanced and up-to-date booklet for use when delivering a diagnosis of Down Syndrome. It is available as a free e-book from Lettercase.

 

http://www.ndss.org/

http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/

 

 

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