ThinkGenetic is pleased to announce the advocacy partnership with Chromosome 22 Central, Inc., also known as C22C.
Chromosome 22 Central is a parent powered support organization founded in 1997 to raise awareness and provide support for families living with conditions caused by changes to the 22nd chromosome such as Emanuel Syndrome. C22C now supports over 2000 families in all corners of the world, living with many different chromosome 22 disorders including 22q11.2 syndrome, Phelan-McDermid Syndrome, Cat Eye Syndrome and Mosaic Trisomy 22.
ThinkGenetic approached C22C about a potential partnership, knowing the dedication and hard work of this non-profit advocacy group was an important resource for families of chromosome 22 disorders.
“Patient support groups like Chromosome 22 Central help ThinkGenetic meet the needs of those living with a genetic disease,” said Len Barker, President of ThinkGenetic. “With this partnership we are better able to make sure we are answering questions that people living with a chromosome 22 disorder care about.”
ThinkGenetic and C22C formalized their partnership in June recognizing the power of sharing information, expertise, knowledge, and web content to a broader spectrum of individuals and organizations than neither alone could reach and the desire to partner in advocating for people with genetic diseases and disorders.
“Chromosome 22 Central, Inc. is very pleased to join ThinkGenetic in this endeavor,” says C22C President Murney Rinholm. “I’m sure our families would agree that often the most difficult challenge we face is the feeling that we are left to navigate the world of special needs parenting alone. Our mission is to find and support everyone who has ever been told that their child is the only one. This new partnership with ThinkGenetic absolutely fits with our mission and we are excited to be a part of it.”
ThinkGenetic pursues agreements with strategic partners in order to share information, expertise, knowledge, and web content, and to promote greater awareness of available advocacy resources in the field of genetic health.
Hi, my name is Karen and my daughter was diagnosed with this genetic disorder through amniocentesis. She is now 17yr old. We are blessed to have her in our life. She has gone through more health issues in her 17 yes on earth than most people go through in a lifetime. She has had 15 sets of ear tubes,seizure disorder, learning disability, developmental delays. Kidney issues, eye surgery, sickle cell trait, toe nail abnormalities, skin abnormalities. She does have mild to moderate hearing loss, language receptive disorder and possibly more that I have not mentioned. She is a strong and striving beautiful young lady that I would not change for the work. Her personality is so strong that it out weighs everything. Doctors asked me at 5 months did I want to terminate my pregnancy and we decided to leave it in Gods hands and now my baby will be graduating high school next year.💪👏👏👏👏👍
i was dianosed with chromisome 22 duplication i have tried to ask the doctors what exactly is it i have and surgested google because they are clueless of this condition my son recently been tested due to very challenging behavior and very slow learning please could anyone help me understand my condition many thanks