Sotos Syndrome SA
WOW!!!!! This is our first newsletter!!!!
Who are we? We are a group of Sotos moms who are there for each other providing support and love! Currently we are four families; hopefully by the next newsletter we have doubled our numbers!
What do we want to do? We would like to establish a support structure for families in South Africa affected by Sotos Syndrome and raise awareness about the syndrome in our country to promote acceptance.
Click here to download the Newsletter.
AFA Counselling Sevices
Click here to view the counselling services from the Association For Autism
The sms information service for disabled people
We have designed a system to help anyone with a cell phone to find theirnearest rehabilitation or other disability services.
Please send a short SMS to 072-172 2623 with your name, town, disabilityand the info you need.
We will then reply and tell you how to contact your nearest resource.
You can use your free SMS's but we are not a call centre so we do notreply to 'missed calls' or 'please call me'.
You can also send an email to email@example.com or read moreabout us on http://thespongeproject.yolasite.com/
Promotion of the sms info service
We are parents of a 5 year old girl who has Angelman Syndrome . Currently in South Africa there is no network or foundation for parents or families living with an individual diagnosed with this Syndrome. Due to not enough awareness of this Syndrome alot op people living with this has not been diagnosed yet. In countries such as America, New Zealand, Australia and Canada (to name just a few) they have huge systems in place for the diagnosis of Angelman and support to those that have been diagnosed.
We need that network here as this Syndrome is very rare and dibilitating to families. Our goal therefore is to try and locate all the individuals (called Angels) and their families living with Angelman in the whole of South Africa and to unite them.
If you have an Angel or know of one please contact us either on:
firstname.lastname@example.org or 039 7374613 or 0836350237
Shawn and Alida Phizacklea
Speakeasy Stuttering Association of South Africa was established in 1992.
It's vision is to improve the lives of people of all ages who stutter and toliberate them from the fear of speaking so that they can communicate effectivelyin all situations.
It is a non-profit association with a membership of People Who Stutter, SpeechTherapists and other interested persons from throughout South Africa and beyond.A Self Help Group For People Who Stutter is held on a Monday or Wednesdayevenings on a month basis and is used as a forum to discuss issues aroundstuttering, share ideas and experiences, practice one's speech techniques andmeet other people who stutter.
There is no fee involved and if one attends a meeting, there is no obligation toattend other meetings. Speakeasy is held in a friendly, warm and informal forumand everyone is welcome!
For further information, please contact Dina Lilian 082 820 6225.
Hi Hopes offers support, education and partnership to families with deaf orhard of hearing infants and toddlers.
Hi Hopes is an early intervention programme that empowers parents of deaf orhard of hearing children aged birth to three years. The programme is home basedand free of charge, resulting in families being visited in their naturalenvironment at a time that suits them.
Parent Advisors visit families weekly and partner with them as they begin theirjourney along the (often unknown) road of hearing loss, with their child. Theyoffer support, information and education about any area of deafness thatinterests or puzzles the family. Parent Advisors administer quarterlyassessments of language development. This language assessment scale is designedfor children with a hearing loss and assesses the child’s progress in languagedevelopment (both receptively and expressively), helping parents make decisionsregarding language methodology, amplification and other related aspectsinfluencing language development. Parent Advisors partner with otherprofessionals in the child’s life to ensure that the best possible support teamis provided for the family.
In addition to a Parent Advisor, Hi Hopes offers families the opportunity to bevisited by a Deaf Mentor (oral or signing, depending on the communication choiceof the family). Deaf Mentors are successful, Deaf members of society, trained towork with families and children with a hearing loss. The Deaf Mentor serves as arole model for the deaf child and family, a language educator and a means ofaccessing the Deaf Community. Having a Deaf Mentor allows parents to interactwith successful Deaf adults and to build on their hope for their child’s future.
Hi Hopes is proud to have a qualified Psychometrist on staff who performs a fullbattery of developmental tests on all children in the programme biannually. Theresults of these tests provide insight into the overall development of the childand allow parents to understand areas in need of development, ensuring that thechild develops to the best of his ability at all times.
If you, or anyone you know, has a child with a hearing loss, Hi Hopes is here tosupport you. Please contact our offices on 011 717 3750 or email us at HiHopes@wits.ac.za.We would love to hear from you and walk this journey with you.
What is it?
Prader-Willi syndrome is a genetic disorder. Individuals suffering from the syndrome have specific characteristics such as hypotonia (low muscle tone),feeding difficulties and incomplete sexual development in the neonatal period, and obesity, short stature, mental impairment and behaviouralproblems later on. The condition was first described in the medical literature in 1956 by three doctors: A. Prader, H. Willi and A. Labhart, hence thename. The prevalence is between 1 in 10,000 and 1 in 15,000 live births. This syndrome occurs equally in males and females and is found in individualsof all races.
Click here for more information
Prader-Willi Syndrome Association (SA)
National Institute for the Deaf
Muscular Dystrophy Foundation (MDF) in South Africa
Down Syndrome South Africa
Soweto early Intervention Centre
Carel du Toit Centre
SA federation for Mental Health