EMERGING LEADERSHIP COUNCIL

Grant Bonebrake grew up in San Diego, CA. He currently attends the University of Denver, where he’s studying history with minors in both leadership and sociology. Grant was misdiagnosed with a different kidney disease from infancy through age 11, when he experienced hearing loss that led to an accurate diagnosis of Alport syndrome. Beginning at age 12, his participation in Alport Syndrome Foundation’s patient meetings inspired him to become active in advocacy. Grant has been a featured speaker at the National Kidney Foundation’s annual Patient Summit; served on a panel for the Patient Focused Drug Development Meeting to inform the FDA about Alport syndrome from a patient perspective; presented his ideas about improved patient care for pediatric Alport patients to nephrologists at Cleveland Clinic; served as a leader and trainer for rare disease patients in California; and received a national award for patient advocacy through the EveryLife Foundation for Rare Diseases. He has also helped shape content and facilitate ASF’s annual Alport Connect Teen Program. In December 2021, at the age of 19, Grant received a kidney transplant through living organ donation from his older brother, who also volunteers for ASF.

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.

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 age 7 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 age 6 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.

Maddison Martin was diagnosed with Alport Syndrome via kidney biopsy, at 4-years-old. At the age of 20, she received the Gift of Life in the form of a living donor kidney transplant. In 2022, she began her career as a registered nurse. She is a former Paul Silver Enrichment Award recipient and, since 2021, has been instrumental in representing ASF in front of fellow patients, medical professionals, and pharmaceutical partners. Maddison’s desire to ensure the patient perspective is well-represented has made her a vital asset during the preparation of numerous ASF educational resources, including our Pediatric Insight Report, Things Transplant Patients Wish They Knew Before Surgery Document, and upcoming Transition to Adult Care document.

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.

Gabrielle was formally diagnosed with X-linked Alport syndrome and diffuse leiomyomatosis in 2017 at age 14, despite presenting symptoms since early childhood. Quickly after her diagnosis, she underwent a full esophagectomy with gastric pull up. Gabrielle’s interest in the world of medicine peaked during the period of recovery following her surgery. She ran the 12-15 Teen Program at Alport Connect in 2024 and 2025, and recently graduated from her Registered Nursing program.