Friday, July 22, 2011

Fragile X & ASD


'Fragile X & ASD'

{Just click on the highlighted words to go to those links.}

Kbj Cosse' - Happy Fragile X Awareness Day! Patty KK, thanks for inviting us. Hope the interview is positive, regardless, we know you represented FX well. Hi5! for Pampered Chef donation! Joshua will enjoy his safety cutting knife.  3 hours ago
well here is our debut!
Fragile X Awareness Day | NBC33 | WVLA  about an hour ago
I dont want people to feel sorry for us, or panic just because their child has autism and go demand the test from all the doctors in the area (wait, that part may not be bad!) but I guess if any of this helps just one family, then its worth it, right?
7 hours ago   
Kbj Cosse' Hi5! Patty K K! Thanks for posting y'alls interview.
a few seconds ago
...I would like to thank my Congressman Bill Cassidy for supporting our cause and being a member of the Fragile X Caucus! and big shout out to our champion Gregg Harper!!
Let's share Fragile X Awareness Day and Patricia Kisamore's Awareness Day video and support her Fragile X Awareness Day/Pampered Chef Fundraiser  
Patricia Kelly Kisamore
In all the excitement of Awareness Day dont forget to place your order. 20% of sales (my entire commission) I am donating BACK to the National Fragile X Foundation for all they do! 21 hours ago
Patricia Kisimore  and I met during our 6 months of training with the Louisiana Partners in Policymaking , an initiative of the LA Developmental Disabilities Council.  On June 19, 2010, we were honored to graduate with over 20 other Self-Advocates, Parents, advocates and families representing the developmental disabilities regions in our states.  As you see, 'Patty KK' is still advocating for her son, our son and others with developmental disabilities.  I am proud to recognize her 'uniquely different' family, legislative collaboration, fundraising strategies and media debut on Fragile X Awareness Day 2011!  ENJOY!
Note: As you may recall, I shared that 'Enjoying The Hi-5s of Autism-A Family Experience' launched as my Partners in Policymaking Graduate Project in June 2010.  This family blog is a precursor to 'Celebrating the ADA 20th Anniversary - the Social Networking Way'.  That social networking Facebook proclamation honored the signing of the Americans with Disabilities Act of 1991.  Less than a year post-graduation, I was appointed by Louisiana's Governor Bobby Jindal, confirmed by the Louisiana Senate and selected by the  Louisiana Developmental Disabilities Council to serve as a Parent Advocate for the LADDC . Partners in Policymaking (Louisiana) is accepting applications for the Class of 2012.

References & Resources:

Patricia Kelly Kisamore

What is fragile X syndrome?

Fragile X syndrome is a genetic condition that causes a range of developmental problems including learning disabilities and cognitive impairment. Usually, males are more severely affected by this disorder than females.
Males and females with fragile X syndrome may have anxiety and hyperactive behavior such as fidgeting, excessive physical movements, or impulsive actions. They may also have attention deficit disorder, which includes an impaired ability to maintain attention and difficulty focusing on specific tasks. About one-third of males with fragile X syndrome also have autism or autistic-like behavior that affects communication and social interaction. Seizures occur in about 15 percent of males and about 5 percent of females with fragile X syndrome.

What other names do people use for fragile X syndrome?

  • FRAXA Syndrome
  • fra(X) syndrome
  • FXS
  • Marker X syndrome
  • Martin-Bell Syndrome
  • X-linked mental retardation and macroorchidism
For more information about naming genetic conditions, see the Genetics Home Reference Condition Naming Guidelines and How are genetic conditions and genes named? in the Handbook.

The National Fragile X Foundation
And here is the actual front page article!​/20110720/NEWS/707209684/1020/​germantown-mother-raises-three​-children-with-fragile-x-syndr​ome&template=gazette has breaking Baton Rouge news, weather and sports headlines from NBC TV. If you want accurate and up to date local and national news tune into this NBC on TV channel!
Louisiana Developmental Disabilities Council (LADDC)
We envision a system of services and supports in Louisiana which enable individuals with developmental disabilities to exercise self-determination, be independent, productive and integrated and included in all facets of community life.

Building The Next Generation of Leaders
Partners in Policymaking is a national leadership training program for people with developmental disabilities and parents of young children with developmental disabilities.

Learn more about Social Networking and Advocacy...

"Celebrating the ADA 20th Anniversary - the Social Networking Way ... -
Aug 6, 2010 – ... with Disabilities website, entitled "Celebrating the ADA 20th Anniversary - the Social Networking Way" : ...
  • Take the disabilities awareness polls on this event's profile page ‘Poll' tab. Just click on the ‘Poll’ tab at

  • Here is the official posted link for this event in Louisiana on the America Association of People with Disabilities website, entitled "Celebrating the ADA 20th Anniversary - the Social Networking Way" :
  • Countdown to the 20th Anniversary of the ADA: Day 12 - YES We Can ... -
    Jul 14, 2010 – A. Imparato and so many Americans in Celebrating ADA's 20th Anniversary I have posted my event on my Facebook page - "Celebrating the ADA 20th Anniversary -The Social Networking Way" by KBJCosse'. ...

  • Autism Advocates Tap Social Media Sites to Promote Awareness ... -
    5 posts - 2 authors - Last post: May 15
    Initially, we started Facebook's 'Celebrating the 20th Anniversary of the ADA-The Social Networking Way!' and our various social media ...

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