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Lisa Bonebrake
Executive Director at Alport Syndrome Foundation
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Work Experience
Executive Director
Jan 2019 - Present · 5 years and 11 months
Company Details
The ASF MISSION is to improve the lives of those affected by Alport Syndrome through education, empowerment, advocacy, and research. The ASF VISION is to conquer Alport Syndrome. ABOUT ALPORT SYNDROME Alport Syndrome is a rare hereditary kidney disease that causes a decline in kidney function, hearing loss and vision problems. The disease leads to kidney failure for 50% of most boys by age 25. Girls are affected too, with some impacted similarly to boys but most seeing later disease progression. An Alport Syndrome diagnosis devastates families because it often affects multiple family members across generations. There is no cure for Alport Syndrome and no treatment proven to prevent the development of kidney failure; however, early diagnosis is essential as there are medications to delay the progression of the disease. The majority of the Foundation's resources are directed to medical research to find treatments and a cure to prevent kidney failure and hearing loss in all patients. The Alport Syndrome Foundation (ASF) is the leading independent nonprofit organization in the United States serving and giving a voice to the Alport Syndrome community. For more information, please visit www.alportsyndrome.org.
Year Founded
2007
Social Media
LinkedinFacebook
Industry
Wellness and Fitness Services, Environment, Travel Agents
HQ Location
P.O. Box 4130 Scottsdale, Arizona 85261, US
Keywords
Patient Education and AdvocacyClinical Practice GuidelinesProfessional EducatioSupport CommunityResearch FundingKidney DiseaseAlport Syndrome AwarenessKidney Health5K for Healthy KidneysFundraising
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