UFA - United Families of Aniridia

 Who are we?

     Recently, a group of like-minded individuals came together to address some very specific initiatives related to Aniridia.  We are parents, family members, or individuals who are directly affected by Aniridia and have set some clear goals with regard to social issues and medical complications related to Aniridia.

     We are forming a team to gather much needed data or information in the following areas:

1.  Social network - we will consolidate and gather information about Aniridia and it's related complications and treatments, current research, current fundraisers, as well as information on ‘living with Aniridia'.  We realize that some of this information exists already on other web sites but we would like to expand upon what is already there. This committee will also work on providing a social forum where individuals can post questions, search on past inquiries and just form relationships with others affected by Aniridia.  This forum will exist without the constraints of being a ‘member' of a particular organization.  

2.  Public Awareness - we will compile information and create professionally-specific (i.e. Pediatric Doctors, Eye Doctor, Eye-related researchers, Media, Medical Conferences, Therapists, Teachers) documentation to educate the public about Aniridia.  

3.  Fundraising - we will create and document a strategy for how to best raise funds in both an ongoing and event-based manner.  The last component of this committee will be to develop a communication protocol to let people know exactly where their money went  (for example, which research program and how much was given).  

4.  Research - we will document updates on the status of current Aniridia-related research programs as well as look for and prioritize new research underway.  By having a ‘big picture' of the research landscape, we will be able to best use our funds.

5.  Doctor Liaison/Support - we will create and update a list of nation-wide doctors that are "experts" in the various fields of Aniridia and low vision.  In addition, we will be proactive in sharing information with these doctors.  

6.  Education - Educating visually impaired children (and adults) brings some unique challenges.  We will document and disseminate information that can be used by parents (and taken to schools) to make sure their Aniridic children are getting the best tools for their educational experience.  

We want to be a part of working towards accomplishing these goals irrespective of which organization we may or may not be affiliated with.  We are calling our group the United Families of Aniridia.  Vision For Tomorrow has been gracious enough to offer us an organization with which to work under.  However, we want to be clear that anyone affected by Aniridia is welcome to join us!  Regardless of your involvement, we are certain that everyone in the Aniridic community will benefit from the initiatives we will be working on! if you are interested in getting involved, please contact Helen Mopsick at helen@mopsick.com. Together we can make a difference!

Sincerely,
Helen & Adam Mopsick
Dominic & Michelle Gurgone
Debby Casher
Natalie & Lucas Ebaugh
Stacy Lemmon
Tara McKeag
Cathy Chauvin
Janelle Collins
Patti Gannaway
Keri Haetel
Allison Krangel
Maribel Montes
Joy & Karen Nelson
Lisa Curtis
Tina Perdue-Krim
Cheree Ridzon
Tiffany Smith
Brittany Swedelius
Nicole Teesdale
Jessica & Ryan Warner
Robin Pierce
Dawn Willie
Pattie Young