About Us
FOUNDING COMMITTEE
First Annual Meeting, August 2008
First row: Cara Stepanczuk, Jan Stepanczuk, Mike Kosior.
Second Row: Kathie Sims, Phil Goldstein, Judy Kauffman-Goldstein. Not pictured: Bruce Maguire.
The Norrie Disease Association (NDA) has roots in the online support network called the Norries Yahoo Group, which was created in 1998 by Mike Kosior. Kosior, who has Norrie disease, envisioned a forum where individuals and families affected by Norrie Disease and researchers could freely interact. The correspondence has grown to include topics from complex medical issues to general advice for daily life, and has created an unrivaled support network. The listserv participation rate is high, expecially considering the rarity of the disease, and the group's registry includes over one hundred members today.
A handful of volunteers from the Norries Yahoo Group laid the groundwork in 2006 for what is now known as the NDA. The founding committee met in person for the first time in Boston in the summer of 2008. The first annual meeting was a success and the following officers were elected:
- President: Bruce Maguire
- Vice President: Mike Kosior
- Secretary: Jan Stepanczuk
- Treasurer: Cara Stepanczuk
With a bit of work and a lot of perseverance, the group achieved incorporation and tax exemption under the IRS code 501(c)(3) in Illinois (as of September 15, 2008). They also agreed to organize a series of conventions, the first of which occurred in August 2009.
Mission Statement
NDA exists to promote awareness about and provide resources for those with Norrie Disease (ND) and their family members.
Goals
- To provide support and current information to those with Norrie Disease and their families
- To enable continuing discovery and identification of all the clinical and medical symptoms associated with Norrie Disease along the wide Norrie spectrum
- To encourage and help fund research on Norrie Disease and its associated symptoms
- To promote awareness about Norrie Disease to medical, educational and other pertinent communities