Dear Parent(s),
We are writing on behalf of our Moebius Syndrome Research Team at the Hospital for Sick Children in Toronto. Over the past years, we have had the pleasure to meet many families who have participated in our study of children with Moebius syndrome.
Following a period where we did not have funding to follow children with Moebius syndrome, we are very excited to again be able to continue our research due to great support from the Moebius Syndrome Foundation. We have been funded to do a new advanced genome scan and will be working together with Dr. Ethylin Jabs and Dr. Susan Chang at Johns Hopkins University. Our new techniques at the Hospital for Sick Children with Dr Steve Scherer will allow us to perform unique and complimentary genome scanning.
We are very interested in collecting a blood sample from all the families with children and adolescents with Moebius syndrome and autism. Some families have already given blood to Dr. Jabs and her research group. If you are interested in this new research, with your consent Dr. Jabs can share your DNA with us without requiring you to give more blood. If you are interested, please contact us so that we can facilitate the sharing process. If you have not previously given blood to Dr. Jabs and Dr. Chang, and you are interested in participating, we would be happy to arrange a way to obtain a blood or a saliva sample (blood is preferable since salivary samples do not allow cell lines to be made which give us an ongoing supply of DNA). We can send you a kit in the mail that you take to the nearest blood clinic and can be couriered back to us.
Even if you were unable to attend the conference this year we would be eager to be in touch with you. Please feel free to contact Hayley Wood or Katie Mak-Fan by phone: 416-813-8748 (call collect); fax: 416-813-5558; or email:
wendy.roberts@sickkids.com.
Sincerely,
Wendy Roberts and Research Team
