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The Topical Hour, Rett Syndrome Zohar Levitan speaks with James Westgate and Duncan Miller about Rett Syndrome. This syndrome affects about 1 in 10,000 girls in the first 2 years of their lives and requires that the girls receive 24/7 attention in order to be able to function in a minimal amount. Our guests will tell us about the syndrome, how it has affected their lives as a family and what is being done to try and cure this. We will also hear some ways in which the parents are he
In recognition of Rare Disease Day February 28, 2011 Tara welcomes guest Syndi Ridenour Knowlton and Paige Nues, Director of Family Support for the International Rett Syndrome Foundation.
In an effort to bring awareness to the rare disease please tune in and learn about Rett Syndrome and the work that the foundations is doing.
This is a special blog talk radio/ podcast dealing with God's heart on Rett Syndrome and other illnesses and problems in life. It is to include Minister Shad Bailey saying a special prayer for the children with and famailes of children with Rett Syndrome.
HAVE YOU HEARD ABOUT THE NEWEST DIS-EASE IN PARENTS? IT IS THE "MARTYR SYNDROME!" MANY TIMES IT CAUSES A PARENT TO LEAVE HER/HIS CHILDREN EMOTIONALLY AND SOMETIMES PHYSICALLY. WE WILL TALK ABOUT THIS TODAY, MONDAY, AT 11, FAVORITE LISTENERS. LOVE, LINNY
Amanda Williams is a wife, mom, hairstylist, advocate for their son, Jayden, who has Angelman Syndrome, and resident of Ponchatoula, LA.
http://www.angelman.org Angleman Syndrome Foundation, Inc.
http://cureangelman.org Foundation for Angelman Syndrome Therapeutics
http://angelmanbehaviors.org Angelman Syndrome Foundation
Julie N. Jancius is the mom of Ellie, born with Noonan Syndrome. President/CEO of RASopathies Foundation and Noonan Syndrome Foundation branch. Julie discusses the rollercoaster journey of Noonan Syndrome and the gifts of RASopathies Foundation.
RASopathies Foundation (803)522-3110
Asperger's Syndrome or Asperger's Disorder is an Autism Spectrum Disorder (ASD) that is distinguished by patterns of symptoms as opposed to a single symptom. Characteristics of Asperger's can include restrictive patterning in behavior, activities and interests. It can also include preoccupation of narrow subjects, abnormalities in speech such as abrupt transitions, literal interpretations and mis-comprehension of nuance. But what we're going to focus on in this episode are the challenges that come from the unusually sensitive or insensitivity to sound, light and touch.
We will be joined by a former guest Steve from the episode Seduction by Sole who has Asperger's and can tell us first hand how Asperger's effects his sex and fetish life. This is an especially important episode for those of you in the sex and BDSM world who may encounter someone with Asperger's and how they can make their sexual experience even better and how to avoid pitfalls that can come with these intense sensitivities.
**Please Note** If you see a differing date in the url of this program, this is a BTR glitch for shows that start after a certain time of day. This show is definitely Tues Apr 30, 2013 at 10 PM ET. Although all our shows say that they are 2 hrs in length we try to keep it as close to 1 hr as possible so get those calls in EARLY!
Carrie Champeau, resides in Victoria, Minnesota. She is a wife, a SAHM and a mother of 4 adult children. 2 of the adult (ages: 26 and 22 years old) children were diagnosed with Cohen Syndrome approximately 6 months ago. Carrie lovingly tells the joys and difficulties of raising 2 chilldren with Cohen Syndrome.
On This Episode of The Beautiful Butterfly Show we will be Discussing " Understanding Down Syndrome". When it comes to Down Syndrome alot of people are often left clueless and to what it entails, how does it happen???... what its like for a child?? and what a parent goes through raising a child with Down Syndrome. Today Ms Teri The Advocate will be Joining us and sharing her personal story as she is raising a daughter with Down Syndrome!
***Down syndrome (DS), also called Trisomy 21, is a condition in which extra genetic material causes delays in the way a child develops, both mentally and physically. It affects about 1 in every 800 babies born in the United States.
Though Down syndrome can't be prevented, it can be detected before a child is born. The health problems that may go along with DS can be treated, and many resources are available to help kids and their families who are
Julie Cevallos, from the National Down Syndrome Society, will be our guest on this show.
Julie will join Nicole and Terri to talk about ways in which students with Down Syndrome can be included in the classroom and school life.
For more information, go to www.theinclusiveclass.com.
Sharon Byfield. The mother of Joey. I'm a loving mother of four. I love children and love working with them and helping them. I've been a foster mother for over 20 years and I've worked with pregnant teens, Medical Fragile babies, and Special Needs children. We have four children in which we love so dearly. Joey Byfield is a 12 year old boy who has Cru-de-Chat, Cerebral Palsy, and is also fed by a G-Tube. He doesn't walk or talk. But he's a loving boy and his spirit is as joyous as can be. He loves soft music, but he's a fan of Bob Marley. He will move those legs of his to jam to Bob Marley all day if he could. Joey is in need of a medical fragile bed that is very expensive, that will prevent him from falling out of bed, due to the fact that he can not break his falls. Joey has two sisters, an older brother; in which the youngest sister is medical fragile too. Joey wants to be where all the fun is and lives life to the fullest, omitting his situation.We hope this beautiful celebration can help him continue his life in a fulfilling way.
Cri du chat syndrome, also known as chromosome 5p deletion syndrome, 5p minus syndrome or Lejeune’s syndrome, is a rare genetic disorder due to a missing part of chromosome 5. Its name is a French term (cat-cry or call of the cat) referring to the characteristic cat-like cry of affected children. It was first described by Jérôme Lejeune in 1963. The condition affects an estimated 1 in 50,000 live births, strikes all ethnicities, and is more common in females by a 4:3 ratio