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ADULT PROGRAM

The Adult program will be facilitated by ASF Staff, Board members, and members of the Emerging Leadership Council.

TEEN PROGRAM (AGES 16-18)

Grant Bonebrake

Grant Bonebrake is 21 years old and lives in San Diego, California. He attends University of Denver, studying history with a minor in leadership and sociology. Grant was misdiagnosed until age 11, when he experienced hearing loss that led to an accurate diagnosis of Alport syndrome. In December of 2021, Grant received a kidney transplant from his older brother and has since been doing well. His participation in Alport Syndrome Foundation’s (ASF) Patient Meetings inspired him to become an active patient advocate. Grant has been a featured speaker at the National Kidney Foundation’s Patient Summit meeting; served on a Patient Focused Drug Development Meeting to inform the FDA about Alport syndrome from a patient perspective; presented his ideas to nephrologists at Cleveland Clinic about improved patient care for pediatric Alport patients; attended Rare Disease Week 2020 as a patient advocate; and previously worked for EveryLife Foundation. Grant is hoping to pursue a college degree in History with the hopes of becoming a professor. His hobbies include reading, skiing, volleyball, and hanging out with friends at the beach.

Sarah Kraut

Sarah Kraut is a 25-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. She is currently a member of ASF’s Emerging Leadership Council.

TEENS PROGRAM (AGES 12-15)

Gabrielle will be assisted in facilitating this program by members of the Emerging Leadership Council.

Gabrielle Sawczyn

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 currently works as a Certified Nursing Assistant at the same hospital associated with her health history, and has one more year before completion of nursing school.

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