ALGSA Builds Meaningful Relationships to Advance Science
The ALGSA is dedicated to improving the lives of patients and families affected by Alagille Syndrome and accelerating scientific research aimed at finding treatments, improving outcomes, and one day, finding a cure. We continue to build meaningful relationships with scientists, researchers, and clinicians working in Alagille or related fields and are highly committed to helping advance science and research efforts by offering many types of support. We are extremely resourceful and willing to jump in and help achieve science and research goals and respect confidentiality needs allowing for a strong and meaningful relationship. Types of support offered include:
- Formal partnership for scientific projectsNIH Grant support letters
- Speaking opportunities
- Networking opportunities
- Seeking out resources
- Providing patient voice
- Patient recruitment
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Applications open in early January and close in late April each year with award announcements in mid-May. Application materials will be available here each January for the academic year starting with fall term of each year.
In February 2015, the Alagille Syndrome Alliance (ALGSA) established the Alaina K Hahn Celebratory Scholarship in honor of Alaina K. Hahn, the daughter of Cindy Luxhoj, ALGSA Founder. Alaina was born September 30, 1990, with Alagille Syndrome and was the inspiration for the creation of the Alagille Syndrome Alliance. She passed away September 30, 1990, due to complications with Alagille Syndrome on January 15, 2015, when she was only 24 years old.
The Alaina K Hahn Celebratory Scholarship fund the education of high school graduates or GED credentialed recipients with Alagille Syndrome who are entering or enrolled in an accredited US university, college or vocational school and choose to pursue higher education in the human biological, medical, or health sciences field. The scholarship award is $1,000 for a single year and is renewable for a second year, subject to open competition with other applicants, for a total possible award of $2,000.
Alaina cared deeply about other children and adults who battle Alagille Syndrome. She talked, texted, and emailed her many ALGS friends daily and was constantly sharing advice and experiences with parents and patients through social media. She lived and breathed this disease, but never let it limit or define her.
A graduate in Human Physiology from the University of Oregon, Alaina was pursuing certification in Orthotics and Prosthetics with plans to obtain a Masters in O & P from the University of Washington when she died. This scholarship honors Alaina’s legacy.
Questions? Email: alagille@alagille.org