International Costello Syndrome Support Group

I am working on a new system which will be available in the next day or so - 21/09/2009

Welcome to our contact page

There are three of us parents who collect and coordinate the information about Costello syndrome internationally. Lisa Schoyer in the USA, Leonie Bence, in Australia and Colin Stone, in England.

Hi my name is Colin Stone; I'm the webmaster and founder of the International Costello Syndrome Support group. The support group is a registered UK Charity - 1085605

I live in Manchester England with Cath my wife, and my daughter Helaina. Helaina was born in 1994, and diagnosed with Costello Syndrome at three months of age. My interests are all things to do with IT, and electronics. I love gadgets, as well as gaining a better understanding of CS.

Our support group was established in 1997. Since that time the understanding of CS has grown through knowledge and understanding of how it effects individuals with the syndrome. Please help us find out more about the developmental aspects of the syndrome by completing our research form.

If you have a family member affected by CS, you are welcome to join the support group. To do so, please fill in the Join the support group form. We offer support by phone, email, List serve, and this website.

If you are just passing through, then take a moment to leave a message in our guestbook.

Hi My name is Tammy Moore, and I am the president of the Costello Syndrome Family Network. CSFN is a 501 (c) (3) non-profit organization based in the USA.

My husband Johnny and I have three children…Justin, Landon and Kelsi. Kelsi, born in 1993, was diagnosed with CS just before her second birthday. We live in Birmingham, Alabama where I chaired the 1st International Costello Syndrome Conference in 1999. As a co-founder of CSFN, I have served as Vice-President and am honored to now serve as President.

My passion is working with families …I also love to read, knee-board, and travel! In my “day job” I serve as Parent Consultant for Children’s Rehabilitation Service, Alabama’s Title V program serving families with children with special healthcare needs. I am a resource “guru” and if I don’t know it…I will find it!

Both CSFN and ICSSG were founded by parents. We welcome parents of children with CS and their families to join us as we learn new things about CS everyday, share experiences, raise awareness, and support and advocate for research….all of this to bring even a better future for those with Costello syndrome.

Hi My name is Lisa Schoyer, and I am the past president of the Costello Syndrome Family Network, the American "chapter" of the International Costello Syndrome Support Group (ICSSG).

I have two children, Quin who had CS (who died in 2002 from relapse of CS-related cancer when he was almost 7) and Turner, my healthy, "typical" daughter.

I'm the medical information maven. I mostly know about all the medical stuff that Quin went through, and am learning from other parents about the other CS-related things that happen, like Chiari malformations, shunts, etc.

I also am the designated liaison with the Costello Syndrome Professional Advisory Group (CS PAB), as well as the Costello Syndrome Research Advisory Group (CS RAG). The PAB is the professional research group, and the RAG helps us with policy issues between us and the PAB.

My name is Leonie Bence. My husband George and I have two daughters. Lucy is our Costello person, born in 1976. Emma is four years younger and married to Owen. In May of 2006 Lucy moved out of home and into supported accommodation for 4 days every week. She loves it, and so do her parents..We live on the east coast of Australia in the seaside town of Sawtell. A great place in a sub tropical climate to live.

I have been gathering developmental information about Costello syndrome people for many years.

We did not receive a diagnosis for Lucy until she was 16 and a definitive one until just before her 30th
birthday, at which time a blood test had become available. It was the years of uncertainty we experienced that spurred me onto collecting this information from families, and the statistics from this information can be handed onto the medical group that support us.