Alagille Syndrome Alliance Announces Establishment of the
Alaina Kaitlyn Hahn Celebratory Scholarship
The Alagille Syndrome Alliance (ALGSA), a nonprofit organization dedicated to furthering awareness and understanding of Alagille Syndrome, announces the establishment of the Alaina Kaitlyn Hahn Celebratory Scholarship. The scholarship celebrates the legacy and impact of Alaina Kaitlyn Hahn, who passed away on January 15, 2015, due to complications from Alagille Syndrome, a rare genetic condition affecting 1 in 35,000 individuals. Alaina is the daughter of ALGSA Founder and CEO Cindy Luxhoj Hahn and is remembered for her inspiring contributions to Alagille awareness through her art and jewelry as well as unending leadership within the Alagille community.
“There was an amazing outpouring of support from Alaina’s friends and family along with the Alagille community, many of them making contributions to the ALGSA in Alaina’s memory,” said Anna Chow, ALGSA Board President. “The Board of Directors decided the best use of these funds would be the establishment of a scholarship fund that would celebrate Alaina’s aspirations and goals.” After receiving her Bachelor’s degree in Human Physiology from University of Oregon in 2013, Alaina planned to pursue certification as an Orthotics and Prosthetics (O&P) Technician and then obtain her Master’s in O&P at the University of Washington. She hoped to one day operate her own O&P clinic for children with limb loss. Scholarship funds will be used to support students with Alagille Syndrome who choose to pursue education in the health sciences.
“As someone who overcame obstacles to pursue higher education and live a life full of laughter and love, Alaina was a remarkable inspiration to the Alagille and rare disease community,” noted Roberta Smith, ALGSA Communications Chair. “The Alliance wants to remember Alaina by supporting other young adults as they pursue their dreams.”
During their February 2015 annual meeting, the ALGSA Board of Directors also elected to posthumously appoint Alaina as Board Member Emeritus in recognition of her considerable impact in promoting understanding and awareness of Alagille Syndrome. At the same meeting, the board also voted to further honor Alaina’s legacy through the establishment of a Junior Board Member position that recognizes the vital role young adults such as Alaina can play in rare disease awareness and advocacy. Scholarship applications and funding guidelines will be released in late 2015. Individuals interested in donating to the Alaina Kaitlyn Hahn Celebratory Scholarship may do so via the ALGSA’s website at www.alagille.org or by contacting the ALGSA.