Language
About Us FREE MEMBERSHIP DONATE NOW
Select Page

Established in December 2020, the Emerging Leadership Council’s (ECC) purpose is to ensure the voice of patients within the 25-35 age range is well represented in Alport Syndrome Foundation’s decision making and 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.

Click here to watch a December 2021 video featuring ELC members.

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

Jess Davis, Council Member

Jess Walters (she/they) is a 31-year old independent scholar, disability justice advocate, and emerging multi-media artist and documentary producer from Charlottesville, Va. She earned a degree in Psychology from the University of Virginia in 2014 and continues the work of her late mentor Dr. John Bonvillian on the development and testing of the Simplified Sign System, a novel gestural communication system that can be used as a form of Augmentative and Alternative Communication (AAC). Jess continues to be fascinated by the interconnecting mechanisms between neurology, nephrology, and non-verbal communication, and explores these themes throughout her research, advocacy, and art.

Adam Jardine, Council Member

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.

Joseph Lagas, Council Member

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, Council Member

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, Council Member

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.

Maddison Martin, Council Member

Maddison Martin, age 23, was originally misdiagnosed with Glomerulonephritis at age 2 before receiving a formal diagnosis of 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 kidney transplant from her high school attendance secretary, Tammy. Inspired by her Alport journey, Maddie completed her bachelor’s degree in nursing and works as a Transplant RN at the very hospital where she received her kidney transplant in 2019. She is excited for the opportunity to share her knowledge of kidney disease and organ transplant with the ASF community, as both a patient and a nurse.

Amy Rhodes, Council Member

Having been affected by the impacts of Alport syndrome for the bulk of her life, Amy is proud to serve on the Emerging Leadership Council to bring her passion for education and providing support to patients and their families. At the age of 5, her father went into end-stage renal disease and was given the second chance of life through kidney transplant, thanks to his father. In Spring of 2021, Amy and her oldest son, Ben, were diagnosed with Alport syndrome and began treatment. She has watched the impact of the disease on her father, and has recently navigated the diagnosis on herself and her son, and believes she can use her personal experience with the disease to positively impact others in similar situations. Specifically, it is Amy’s goal to leverage her experience and education as an Elementary Education teacher to ensure families dealing with the diagnosis have the information, support, and resources necessary to take action on their diagnosis and maintain a positive outlook for the bright future they have, regardless of their diagnosis.

Cassie Smith, Council Member

Cassie Smith, a Kentucky native, is a registered nurse and mom to three young children. She was first diagnosed with Alport syndrome in late childhood. Two of her three children were diagnosed in early 2019. Both her professional and personal experiences make her passionate about patient advocacy. ASF is confident these experiences will serve the Council well. Cassie recently shed light on Alport syndrome and eloquently shared her experiences as a patient as part of the Female Diagnosis Stories video.

Alport Syndrome Foundation extends gratitude to the following organizations for sponsoring efforts of the Emerging Leadership Council:

Select Language
X