Meet the Hearts and Minds Behind the aHUS Foundation

Welcome to a space where dedication meets determination, compassion meets expertise, and where the relentless pursuit of a brighter future for those affected by atypical hemolytic uremic syndrome (aHUS) is at the core of everything we do.

The aHUS Foundation is more than just an organization. It’s a collective force of individuals who have come together with a shared purpose: to make a lasting impact in the fight against aHUS.

Our team is not merely a group of professionals; we are a family bound by the belief that aHUS should not stand in the way of a healthy and fulfilling life. As you navigate through the pages of our team member biographies, you’ll discover the faces, stories, and expertise that drive our mission forward.

Every member of our team has a unique journey that has led them to this cause, and each brings their own set of skills, experiences, and unwavering commitment. Together, we are making strides in raising awareness, providing support, and advancing critical research to combat aHUS.

Take a moment to get to know the individuals who make the aHUS Foundation a beacon of hope for those in need. Their stories, their passion, and their dedication will inspire you, as they have inspired us all. Join us on this journey of hope, healing, and progress, as we work together to transform lives and bring us closer to a world where aHUS is no longer a threat.

Donna Bower Board Member

Donna Kolp, a passionate advocate and dedicated board member of the aHUS Foundation, joined the organization during its early days when it was known as The Foundation for Children with Atypical HUS. Her journey was inspired by her son, Jonathan, who was diagnosed with aHUS in 1993. Donna’s steadfast commitment led her to become a board member in 2016, just before her son’s life-changing kidney transplant. Throughout her tenure, she has relished every moment spent connecting with patients and caregivers across the United States, forging bonds within the aHUS community. To Donna, the aHUS family is more than a community; it’s her extended family, and she continues to be an unwavering pillar of support within it.

Amber Schlaht Board Member

Amber Schlaht is a resilient advocate and a pivotal member of the aHUS Board of Directors since 2017. Her journey with aHUS began with a harrowing experience in September 2014. Misdiagnosed at first, Amber’s health rapidly declined, leading to acute liver and kidney failure. Through a tumultuous 14-day hospitalization and multiple procedures, Amber’s determination to survive was unwavering. Eventually diagnosed with aHUS, she became her hematologist’s first case, guiding her healthcare team toward recognizing similar conditions in others. Embracing Ultomiris treatment since October 2014, Amber’s resilience and advocacy continue to inspire, and her positive response to treatment serve as a beacon of hope for those battling aHUS. Her steadfast commitment to raising awareness and supporting the aHUS community shines through her role on the board, offering guidance and compassion derived from her personal journey.

David Deffenbaugh Board Member

Dave Deffenbaugh is a dedicated advocate and the chairman of the aHUS Foundation, driven by his profound personal connection to the cause. As the father of Alyssa, who was diagnosed with aHUS in 2009, Dave’s journey with the disease ignited a passionate commitment to making a difference. Joining the aHUS Foundation as a board member in 2015, he swiftly assumed the role of chairman in 2016, leading the charge in raising awareness and support for the aHUS community. Dave’s proudest accomplishments include orchestrating conferences that unite aHUS patients and caregivers for the first time, fostering a sense of belonging within the community. For Dave, the aHUS community is not just an organization; it’s a family, and he is honored to be a part of it.

Fran Pekor Board Member

Fran Pekor is a strong advocate for her 7 year old daughter, Brooke, who was diagnosed at an early age of 6 months old. As a parent and caregiver of a child with aHUS there are many challenges and stresses to overcome. With the wonderful support of a team of doctors and with the aHUS foundation, Fran was able to see the light after her darkest days- when she held her 6 month old daughter as she went into cardiac arrest. She prayed for Brooke’s heart to start beating again for 16 minutes. After being able to connect with another mother in the aHUS community, she found comfort for the first time in weeks while her daughter lay in an induced coma. After making that connection, she knew she wanted to be an advocate for the aHUS community and help others dealing with the same struggles. Fran’s goal is to see the children with aHUS live a long and healthy life. “I believe with the aHUS foundation we can raise awareness, and provide education on this ultra rare disease, while offering support to all those diagnosed with aHUS.”

Alyssa Deffenbaugh Marketing & Administrative Manager

Alyssa Deffenbaugh, a beacon of resilience and compassion, serves as the marketing manager for the aHUS Foundation. Alyssa’s journey with aHUS began in 2009, a pivotal moment when she was diagnosed at just 21 years old. This life-altering experience, marked by a kidney transplant and two years of dialysis, transformed her perspective and ignited a deep-seated commitment to support others facing similar challenges. Joining the aHUS Foundation in 2015, Alyssa has dedicated herself to connecting with fellow patients and caregivers. As the driving force behind merchandising, she combines her personal insight with unwavering dedication to enhance the lives of aHUS-affected families. Alyssa’s warm-hearted nature and willingness to lend an ear and assistance make her an invaluable resource within the aHUS community.