EMERGING LEADERSHIP COUNCIL

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.

Mack’s mother and younger brother were diagnosed with Alport syndrome when he was in middle school. He grew up understanding how this disease can affect the entire family. In 2021, at the age of 21, he became a living kidney donor for his brother.  As a member of the Emerging Leadership Council, Mack is enthusiastic about supporting Alport syndrome awareness and education about living kidney donation. He is a 2024 graduate of the University of Utah and works in commercial real estate in San Diego.

Rachel Denham was diagnosed with Alport syndrome when she was 8 years old. She is currently pursuing a Master’s degree in Genetic Counseling at the Massachusetts General Hospital Institute of Health Professions. She is passionate about diagnosis and treatment for X-linked carriers, as well as perceptions of medical providers. She is excited to connect with other members of the ASF community and advocate for patient interests.

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 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 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 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.

Brett works in early-stage venture capital at Sweet Spot Capital and graduated from Washington University in St. Louis in 2018. Alport syndrome has been part of Brett’s family for generations. His grandfather, Richard Faber, lived over four decades on hemodialysis. Brett was diagnosed at a young age and began to learn more about Alport syndrome after experiencing hearing loss in his early 20s. As a member of the Emerging Leadership Council, Brett hopes to help in advancing research, patient education, and access to testing for early diagnosis. Outside of work, Brett loves to play and watch hockey and has a huge passion for cooking, enrolling in culinary school this past year.

Ben Rosengart was diagnosed with Alport syndrome in his mid-teens. He is joining the Emerging Leadership Council with the goals to be a resource for other Alport patients and to aid in the fight for better treatment and awareness of Alport syndrome. He is eager to the help the community in any way he can. Ben works in commercial real estate, specifically focused in student housing. He lives in New York City, although he spent time growing up in Chicago and went to school at the University of Southern California.

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.