The AOIP and NOAH Co-Host a Mini-Conference for Albinism
The National Organization for Albinism and Hypopigmentation (NOAH) held a mini-conference at the MCW on August 1, 2015. The conference was co-organized and co-sponsored by the Department of Ophthalmology. Michael McGowan, the Executive Director of NOAH, was on hand to kick-off the conference.
Left to right, Dr. Shari Parker, Dr. Murray Brilliant, Dr. Brian Brooks, Dr. Gail Summers, and Michael McGowan
Attendees of the mini conference ranged in age from 17 months to over 60 years old, and heard from world-renowned experts in albinism, including Dr. Brian Brooks from the National Institutes of Health, Dr. Murray Brilliant from Marshfield Clinic Research Foundation, and Dr. Gail Summers from the University of Minnesota.
In addition to updates on research, the conference provided valuable information on topics such as assistive technology, IEP process for students, and adult life with albinism.
Jacci Borchardt, Cory Ballard, and Claire Egan were also on hand to discuss programs and services provided by Vision Forward, a local organization whose mission is to “Empower, educate, and enhance the lives of individuals impacted by vision loss through all of life’s transitions.”
Also in attendance was Dr. Shari Parker, President of the World Albinism Alliance and Secretary of the Albinism Fellowship of Australia. Dr. Parker shared her perspectives on the societal challenges that are unique to different countries, such as the availability of accessible public transportation to individuals with vision loss.
Dr. Murray Brilliant explains the formation of melanosome proteins within human cells.
By all accounts the meeting was a huge success. A parent of a child affected by albinism said, “We really enjoyed it! It was so nice to be in small groups with smart, caring people! Though I’ve obviously seen people with this condition, it just occurred to me today that we have never actually known anyone with albinism. It was great to be with families and individuals living with it! Great people, resources, informative research from quality doctors and researchers – we are so grateful!”
Founded in 1982, NOAH’s mission is to act as a conduit for accurate and authoritative information about all aspects of living with albinism and to provide a place where people with albinism and their families in the U.S. and Canada can find acceptance, support and fellowship.