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ICAN International Conference, Microphthalmia and Anophthalmia

The 1999 ICAN International Conference


updated 4/20/99

ICAN was established in the early 1990's by a group of parents who had children born with anophthalmia/microphthalmia in the Philadelphia, PA area. They enlisted the help of Dr. Adele Schneider, a geneticist working at AEMC.

Dr. Schneider and her great team has started a register of children born with A/M. They have since received grants from the MARHGN foundation for their research into causes for anophthalmia and microphthalmia.

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The Conference

Friday night at the Adam's Mark Hotel scheduled the kick-off with a coffee and dessert social and early registration.
What a wonderful idea to let the adults talk and the children play, so everyone could get to know one another!

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Saturday, the actual conference was at the Overbrook School for the Blind.
After a long evening the night before, things started with breakfast for everyone at 8am.
By 9, Sandy Gomberg,President of ICAN, was eager to welcome everyone and get things started. Well, we were supposed to start at 9, but getting all of the children settled with the Villanova nursing students (I don't know about the other parents but I had to pry Jake off my leg! He was fine after I left tho, and actually had alot of fun with his new friends), and getting everyone into one room took a bit longer than expected!

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Sandy introduced our first speaker, Dr. Adele Schneider, who gave us a brief introduction to Genetics. She reviewed basic genetic concepts which lead into a discussion of updated findings from the A/M registry.

I am not sure if you all understand the importance of the registry. For the researchers to help find a cause(s) those questionaires REALLY, REALLY need to be filled out as best can be remembered and sent back to AEMC and Dr. Schneider. I am asking those who haven't filled one out to contact Dr. Schneider and her staff at AEMC to have one mailed to you, to complete.

Please do this for your child.

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After Dr. Schneiders Introduction to the basics of genetics, Joyce Barbagallo,MS, had the pleasure of introducing 3 genetic researchers to us all.

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The first to speak was Dr. Tom Glaser.
Dr. Glaser discussed normal eye development and the genes controlling that process, as well as some specific mutations known to cause eye malformations. He also talked about current areas of investigation and methods used in DNA research.

Dr Natan Kahn presented information on the role of the Rx gene in eye development, as well as its possible role in congenital anophthalmia.

Dr. Elena Semina discussed the role of PITX genes in the eye development. The study of these genes is important so that scientists can better understand the occurance of congenital eye malformantions.

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Well! After all that everyone took a well needed breather!

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The morning was concluded with a Family Panel discussion, moderated by Carol Weingarten, PhD, RN.
Carol outlined the first nursing research project to focus on real life experiences of a family with an anophthalmic child. The panel participants (families) discussed their own experiences with A/M and everyone had the opportunity to participate in the discussion.

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I tell you that was a long morning and we were only half thru! The Hammonton Lions Club was there again to serve lunch,and boy did they have their hands full!

Dr. Steve Streitfeld has already added pictures to their website. Visit here.

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After lunch, a busy afternoon was also scheduled.
It started with the Expert panel discussing the treatment of A/M. Joe LeGrand Jr., BCO (Ocularist) moderated the panel, and introduced
Dr. James Katowitz, an oculoplastic surgeon,
Dr. James Merritt, also an oculoplastic surgeon,
Randy Trawnik BCO, an ocularist,
Kevin Kelley BCO, also an ocularist, and
Dr. Vincent K Young, an ophthalmologist.
They presented varied approaches to the treatment of A/M and reiterated the importance of a good team to ensure optimal treatment of individuals with A/M. (A good team consists of Ophthalmologist/Oculoplastic Surgeon, Ocularist, Parents, and patients.)

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Whew! Another breather to digest ALL that information!

And on to the next....

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Sandy Finkel,M.Ed.,MS, was the moderator discussing "Guide to special services and education."
Ms. Finkel reviewed the responsibilities of a teacher who works with the visually impaired. A teacher must work to enhance the development of the whole child which encompasses many tasks including: understanding the implications of the eye conditions, individualized curriculum developent, providing teacher and parent consultations and utilizing resources for the visually impaired.

Alyssa Balkin,M.Ed and Heidi Murphy,BS, specialize in Orientation and Mobility.
As they discussed, O&M is the ability to know where you are, where you want to go and how to get there. O&M services are provided to individuals with blindness and VI of any age. The services include teaching concepts, sighted guide techniques, cane travel, travel in various types of environments,use of public transportation and the use of any remaining vision for travel purposes.

Dael Cohen,MPH, is a transition Coordinator who discussed Transition and Mapping. She focused on one tool in the Transition Planning process which is the system of "mapping". This was developed at McGill University. The process is person-centered and encourages everyone to be expansive in information gathering and in developing real possibilities for successful adult life.

And of course there was alot of Q&A here.

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The conference ended with an ICAN organizational meeting, asking for individuals, interested to participate in perpetuating ICAN's mission and to help build a stronger support network for families and individuals.
I am happy to report 13 new board members were elected.

In addition to the new board members new officers were also elected.

President-Diann O'Riordan
VicePresident-Sherry Salcho
Secretary-Rita Olsen
Treasurer-Sandy Athenson

Congratulations to all!

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Think its over? Nope! We had time to go back to our hotelrooms and freshen up a bit before the Family dinner banquet started at the Adam's Mark hotel.
Activities were provided for all the children, and they had a great time. It also gave the parents time to talk and get to know one another more. I am not sure about the other parents but I really needed more time, because I didn't get to meet everyone!

Concidering how long the day was I felt the children did really good, some crashed early then woke up, others had to be carried out after the evening ended. It was just great!

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Sunday morning was the last event scheduled, and it gave everyone a chance to exchange e-mails, addresses, and phone numbers. Dr. Schneider and her staff, Joyce, Tayna, Susan and Tina, worked the tables collecting signed consent forms and cheek swabs for DNA testing for those interested.
Closing the conference was a nice brunch for everyone, and wishes from some ( I know I did!) that it didn't have to end so fast.

I know you are wondering were the pictures are.....keep reading and you will eventually come across the all *S*

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Now a few other things.....

The conference was video taped and will be available to interested parties. Stay alert for announcements of availability in the next Conformer Newsletter.

Resolution presented at the State Convention of the Student Nurses Association of Pennsylvania, Nov1998.
"In support of Increase Awareness and Education of Anophthalmia and Microphthalmia"

Sponsor Acknowledgements

Conference Speakers Biographies

Pictures,pictures, and more pictures!

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