Department of Ophthalmology and Visual Sciences Conducts Albinism Research at 2024 NOAH National Conference
The National Organization for Albinism and Hypopigmentation (NOAH) hosted their 2024 National Conference July 11-14, 2024. The Medical College of Wisconsin’s (MCW) team from the department of ophthalmology and visual sciences attended the event and helped conduct research throughout the conference. More than 120 individuals were enrolled in the research in just a day and a half.
The team included Dr. Joseph Carroll (principal investigator), Amy Donahue (genetic counselor), Mina Gaffney (graduate student), Aliya Siddiqui (graduate student), Amber Irons (clinical research coordinator) and Katie McKenney (clinical research coordinator). The team conducted retinal imaging and genetic testing on people with albinism and their families. For many attendees, this was the first time having access to genetic testing. The research was funded by the National Eye Institute.
"NOAH welcomed a team from the Medical College of Wisconsin, led by Dr. Joe Carroll, to conduct on-site research at the 2024 NOAH National Conference (NOAHCon 2024),” says Karen Bly, Executive Director at NOAH. “Due to various barriers including finances, proximity to services, and transportation, retinal imaging and genetic testing or counseling are often out of reach for people with albinism. NOAH's goal was to eliminate those barriers by providing attendees with albinism an opportunity to participate during the conference at no additional cost.”
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. In 2021, NOAH formalized the NOAH Research Program with the primary goal to become a leading voice in albinism research by funding impactful research and building a group of researchers engaged with the albinism community. Dr. Carroll currently serves on NOAH’s Scientific Advisory Board, selected by the NOAH Research Committee.
“This was the first on-site research NOAH has offered since the start of the NOAH Research Program in 2021. The response to this opportunity was phenomenal – roughly one in every six attendees enrolled to participate,” says Bly. “The success of Dr. Carroll's program encourages the NOAH Research Program Committee to continue to promote on-site research opportunities for attendees at future NOAH conferences."
Dr. Carroll also received a note from a grateful parent after the event. “Thank you so much for the opportunity to participate in the onsite research at the NOAH conference! As a parent of a child with albinism, it was great to see how excited our daughter was to participate and the pride she had in contributing to additional knowledge of albinism.”
The next NOAH National Conference will take place in Columbus, Ohio in July 2026.