View Full Member List >> Cindy Luxhoj

Contact Information

Work Address

Address 1
PO Box 4216
City
Wilsonville
State
OR
Zip
97070
Work Email
cluxhoj@alagille.org
Work Phone
503-970-1255

Cindy Luxhoj

Member Since
2017
Company Name
Alagille Syndrome Alliance (ALGSA)
Industry
Associations and Non-Profit Organizations
Company Website
www.alagille.org
Job Title
Executive Director and Founder
Job Description
I wear a myriad of hats at the ALGSA, which I founded in 1993, three years after my daughter Alaina was born with a rare genetic disease called Alagille Syndrome (ALGS). Our mission is: Mobilizing resources, facilitating connections, promoting unity, and advocating for a cure to inspire, empower, and enrich the lives of people affected by Alagille Syndrome. In concert with the Board of Directors, I manage all aspects of the ALGSA, building a better life for individuals and families all over the world, advocating for research, and raising awareness. Stay strong! Press on! is our motto and we live it every day as we help ALGS Warriors all over the world face down the monumental challenges of this rare disease.
Birthday
January 19
Education
BA Geography, University of Oregon; MUP Urban Design and Planning, University of Washington
Knowledge
Nonprofit administration and governance; rare disease; patient advocacy
Other Memberships
Patient Centered Outcomes Research Institute (PCORI), Rare Disease Advisory Panel (RDAP), Member; Childhood Liver Disease Research Network (ChiLDReN), Patient Advocacy Group Committee, Co-Chair; Nonprofit Association of Oregon (NAO), Member; Willamette Valley Development Officers (WVDO), Member; Sitka Center for Art and Ecology, Member; Oregon Natural Desert Association (ONDA), Member; Friends of the Columbia Gorge (FOCG), Member
Interests
Hiking, walking, snowshoeing, working out at the gym, acrylic painting, intentional creativity, traveling, sewing, spending time with family and friends, volunteering, to name a few...