RECENT INFORMATION AND RESOURCES
Scientists find gene linked to child blindness – A team of scientists, including researchers in Edinburgh, have identified genetic changes linked to coloboma, which affects around one in every 5,000 births.
A gene known as YAP1 was found not to be working in some patients, leading to the condition. The researchers hope the findings can lead to better diagnosis as well as treatments which may be able to reverse the problem.
SLEEP STUDY FOR INDIVIDUALS WITH BILATERAL ANOPHTHALMIA/MICROPHTHALMIA
Does your child or do you have bilateral anophthalmia/microphthalmia(A/M) and have difficulty sleeping? If so please consider learning more about a study analyzing sleep cycles in individuals with bilateral A/M. The study entails answering a questionnaire then wearing a watch for 7 days continuously while keeping a sleep diary. Age does not matter, these watches can be placed on ankles of infants and parents can keep the diary. If you are interested in learning more about this study contact Adele Schnedier, MD 215-456-8722 firstname.lastname@example.org.
You have just heard your baby has anophthalmia or microphthalmia (A/M). This is a difficult time. You may feel overwhelmed with grief and anger. You may instead be saying, the doctors must be wrong somehow. Or you may be rethinking every step of your pregnancy wondering what you did or did not do that could have caused this to happen. All of these are normal reactions to such unexpected news. YOU ARE NOT ALONE!
This website was designed to help you learn more about A/M. It can help you learn what to expect in the coming days and months. We realize that many medical professionals may not have ever treated another child with A/M, which can be frustrating.
We hope the information on this website will help you as you navigate through this confusing and scary time. Please remember that is all right to ask others for help. Turn to your doctors, friends, family and other support systems who can guide you during this time.
ican (international children’s anophthalmia/microphthalmia network) is a support group made up of families and professionals, for families dealing with these issues. The support group can put you in touch with other families or medical professionals who can help. You can call 1-800-580-ican or go to the support forum link on the left of this screen to contact other families.
website links to state agencies that offer funding for developmental disabilities
“Hello ican friends and families, I just came across this link that list all the states that offer funding for developmental disabilities. www.ddrcco.com/states.htm. You may be able to apply for funding for the ican conference. The sooner the better. You may have to search on your states page under “developmental council” I had a hard time finding the info for MASS but I did find it. I had applied for these grants/funds for previous conferences and it sure did help w/getting a family of six to Florida. I would encourage all of our ican families to apply for such grants to attend the conference. Please let us know how this works out by e-mailing email@example.com”
~ Margaret Cote