Happy Mother's Day !
Its been a while since we all did a shout out on where we are so families can connect so please share you area if you want to connect !
Morgan and I are in Clearwater Florida USA area :)
We are growing in numbers and now have 322 members .. glad to see our kids are getting diagnosed earlier !
hello, do you know any italian cohen association or any families?
So proud when our families make a difference !
Thanks for raising awareness to the Brown family !
We all make a impact
http://www.orpha.net/consor/cgi-bin/index.php?lng=EN
www.orpha.net
Please see important Cohen survey request from Orphanet and get involved !
http://cohen-syndrome.org/orphanet-survey/
Orphanet has contacted us to request parents to complete a survey, if you are interested in completing this please E mail admin@cohen-syndrome.org to receive form.
cohen-syndrome.org
http://en.wikipedia.org/wiki/Individualized_Education_Program
Parents have a voice.. be a squeaky wheel to get services that your kids deserve .. our kids are awesome !!
In the United States an Individualized Education Program, commonly referred to as an IEP, is mandated by the Individuals with Disabilities Education Act (IDEA). In Canada and the United Kingdom, an equivalent document is called an Individual Education Plan.
en.wikipedia.org
Please remind your friends of this very important project that we are fundraising for...
http://cohen-syndrome.org/lending-library-fundraiser/
Can you help a dream come true for a child who can’t speak or a person who has difficulty speaking and needs help to be understood? The Cohen Syndrome Association wants your help to do just that! By donating to help start a “Lending Library,” the CSA would like to purchase an IPAD and install Proloq...
cohen-syndrome.org
Hello my name is Anney and I am from Iceland. I am doing a presentation about Cohen syndrome and I was wondering if you know ecsacly how many cases there are in the world because some say 1000 and other 5000 and some say only 100?
Looking forward for an answer because I want people to know about this rear genetic disease.
http://cohen-syndrome.org/lending-library-fundraiser/
Can you help a dream come true for a child who can’t speak or a person who has difficulty speaking and needs help to be understood? The Cohen Syndrome Association wants your help to do just that! By donating to help start a “Lending Library,” the CSA would like to purchase an IPAD and install Proloq...
cohen-syndrome.org
Please promote our iPad for AAC communication so we can help our families with a lending library. I am so blessed that My daughter has what she needs to communicate but we have families out there that need help !
We all have challenges but please share our fundraising page to promote this new program.
We have 300 likes on our page !!
Hard to believe how far we have come in just a few years with growing and raising awareness about our wonderful kids !
Good morning !
Morgan decided to stop taking Ritalin during the holidays.. with spitting out her meds.. so I sent her to school and she has done amazing ... she is also gaining weight as her appetite has greatly improved so we will be watching closely to make sure the rate of gain is not too sudden
New Program from the CSA !!! Are you able to make a difference for our Kiddos !
http://cohen-syndrome.org/lending-library-fundraiser/
Can you help a dream come true for a child who can’t speak or a person who has difficulty speaking and needs help to be understood? The Cohen Syndrome Association wants your help to do just that! By donating to help start a “Lending Library,” the CSA would like to purchase an IPAD and install Proloq...
cohen-syndrome.org
can anyone tell me more about this syndrome? my son was clinically diagnosed with moebius syndrome because all other testing was normal..but although he has horrible issues with eating and some facial palsy, its not the same as most people with moebius. he is also deaf, delayed, and has very crossed eyes..other than all of that, hes very healthy..3 feet tall, 34 pounds and he is almost 3. i just came across this and it seems to fit him more than moebius. he also has a high arched palate, and his teeth are in a terrible state.
http://www.ncbi.nlm.nih.gov/books/NBK1482/#cohen
www.ncbi.nlm.nih.gov
As the President of the CSA at times I feel it is appropriate to comment on the posts that may come across to ensure parents are informed. We have several clinically diagnosed cases of Cohen Syndrome meaning that a medical doctor may have determined a case that reflects “Cohen like Syndrome” vs. actual genetic conformation. I do not want parents to become alarmed with other family’s posts of experiences as other genetic factors can often play a role.
Our children are individuals and family genetics play a large role in all of our lives and experiences and in some instances there will be cases where there is a misdiagnosis of Cohen Syndrome vs. another reason for our special children. My goal is for our families to be educated with known clinical symptoms of Cohen Syndrome so that we may properly advocate for our children’s proper medical treatment in all cases. Please review Gene Reviews on Cohen Syndrome so that you have the tools needed to ensure your child is seen as an individual and not a Cohen Syndrome child.
Warm Regards
Lisa McElhinney
President
Support the CSA and order our calendar
http://cohen-syndrome.org/online-store/
cohen-syndrome.org
