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Established in December 2020, the Emerging Leadership Council’s (ELC) purpose is to ensure the voice of patients in their 20s and 30s is well-represented in Alport Syndrome Foundation’s decision making. The Council is also designed to develop the next set of leaders to sustain ASF into the future. Membership is by invitation.

ASF Staff will work closely with ELC members to best inform the ASF Board of Directors about critical patient needs.

Want to connect with the ELC? Email: [email protected]

Dusty Atchison

Dusty Atchison didn’t have an official diagnosis of Alport syndrome until his late twenties, but he experienced the symptoms in his early teens, culminating in a kidney transplant at the age of 17. After his transplant (and subsequently graduation from the University of Alabama), he served for two years with AmeriCorps and City Year in New Orleans, teaching and managing a team of AmeriCorps members. Following this, he entered into education technology, guiding school districts in the implementation of new technologies to support their teachers and students. He earned his M.S.Ed in education entrepreneurship from the University of Pennsylvania in 2020 and has since continued to build and support new instructional technologies in schools. He is excited to find ways to assist others who have undergone similar experiences and help champion ASF’s cause.

Adam Jardine

Adam Jardine was diagnosed with Alport syndrome at a young age and began experiencing side effects in his early teens. He majored in Political Science, Public Administration, and Environmental Policy and Planning at the University of Wisconsin-Green Bay and subsequently obtained his law license in 2015 from the University of Michigan. Adam currently works on healthcare and environmental policy for the U.S. House of Representatives. Adam represented ASF at the 2019 International Alport Workshop in Siena, Italy, and served on the patient panel for the August 2020 Alport Family Meeting.

Sarah Kraut

Sarah Kraut is a 24-year old college student who was diagnosed with Alport syndrome when she was 14. She lost kidney function at 18, and her father, uncle, brother, and sister all have Alport syndrome as well. She received her kidney transplant from a living donor in April 2021. Sarah is also a prior recipient of the Paul Silver Enrichment Award and has served as a patient panelist at Alport Connect.

Joseph Lagas

Joseph Lagas is a doctoral candidate at Washington University in St. Louis studying molecular biology. He received a Bachelor’s degree in the same field from the University of Arizona and is motivated to pursue science because of his personal experiences with Alport syndrome. He was diagnosed at seven following the passing of his Uncle, after which his mother founded ASF with the help of other Alport syndrome patients. The foundation allowed him to experience scientific research first-hand, giving him both a unique perspective on the disease and a passion for understanding and communicating the science surrounding Alport syndrome.

Maxwell Lagas

Maxwell Lagas was diagnosed with Alport syndrome at the age of six after the passing of his Uncle. His mother Sharon Lagas seeing a need to bring Alport syndrome patients together founded the Alport Syndrome Foundation. Max is a medical student at Trinity School of Medicine currently in his second year about to take his STEP 1 exam, he graduated from the University of Arizona with a double major in Molecular and Cellular Biology and Human Physiology. He has been to multiple Alport Connect conferences and is very passionate about ASF. His personal and professional experience gives him a unique perspective on Alport Syndrome.

Kelly Lamanna

Kelly is a theater artist and producer living in Brooklyn, NY. She has made a career as a multi-hyphenate artist, creating and directing original work, producing and curating the work of other artists, and managing arts non-profits. She was diagnosed with Alport syndrome at the age of 21 right before her senior year of college. She has spent much of her 20s grappling with the often very heavy questions our condition presents. Her goal in joining the Emerging Leadership Council is to make sure that no other Alport patient ever feels that they are alone. She aims to focus on mental health awareness and community building to bring us all closer and stronger together.

Katelyn Massie

Katelyn Massie is a 20-year-old X-linked Alport syndrome patient. She is extremely passionate about organ donation and advocacy for women with Alport syndrome. She is currently working toward her Masters in Bioengineering at the University of Washington where she has taken a special interest in kidney disease research. Upon completion of the program, Katelyn hopes to continue her research with a focus in Alport syndrome.

TJ Mayfield

TJ currently serves as Project Manager for the Mississippi Diabetes Project at the University of Mississippi Medical Center. At the age of 19, TJ was diagnosed with Alport syndrome and began peritoneal dialysis. Despite the obstacles, TJ completed his degree in Social Studies Education at Alcorn State University before becoming an educator for 6 years. After receiving a kidney transplant in 2019, TJ began working in the non-profit sector fighting for equitable health care for all Mississippians.

John Watson

John Watson was first diagnosed with Alport syndrome at the age of 32. He has a family history of kidney disease, but was the first in his family to discover the condition. John is eager to support ongoing research and discoveries for the Alport community. He works for a health insurance startup in Denver, Colorado and he and his wife Madeline recently welcomed their first son, Wesley. Some of his goals in joining the Emerging Leadership Council are to share his story and to be a resource for others who are diagnosed in adulthood and for those looking to grow their families.