The Board of Directors is comprised of volunteers from a wide range of professional experience who are passionate about improving the lives of AHC patients. The application of their various professional skills and their strong commitment to the mission of the foundation enables the AHC Foundation to develop strong support in the research community, and be excellent stewards of funds raised by our volunteer communiy.
Lynn Egan is the current President of AHCF. She began her journey to find families and a treatment/cure for AHC after her youngest daughter Kathleen was diagnosed in 1991. She has been actively involved with the foundation since its beginning in 1993. Lynn lives in the San Francisco Bay Area with her husband Mark. They have three children, Stephanie, Greg, and Kathleen. Lynn is a retired School Librarian from the Redwood City School District after 15 years of service and 3 years as a volunteer. She also has her own company, Quilt your Memories, specializing in t-shirt memory quilts for any occasion. Lynn Egan – email@example.com
Joshua Marszalek joined the AHCF board of directors in 2013 and currently serves as Vice President of the board. Josh has previously served as Secretary to the Board. Josh and his wife, Laura, live in Rushville Indiana and have two children, Levi and Kathryn. Kathryn was diagnosed with AHC in February 2012, and the Marszaleks joined the list of families who are committed to helping other families and funding research to cure AHC. Joshua is a licensed architect, and owns his own architecture practice, Rural Valley Architecture. Prior to owning his own firm, Joshua worked in Connecticut and at CSO Architects in Indianapolis, IN. Joshua Marszalek – firstname.lastname@example.org
Gene M. Andrasco is currently the Treasurer for the AHCF. Gene joined the ACHF Board of Directors in 2011, and has previously served as the Vice President and Co-Treasurer. Gene volunteers his time to the foundation in honor of his daughter Kiley who was diagnosed with AHC in 2003. Gene lives in Lake Zurich, Illinois with his wife, Kelly and two children, Ryan and Kiley. Professionally, Gene is the Finance Vice President of the Marketing Store. Gene Andrasco – email@example.com
Vicky Platt is currently the foundation Secretary; she joined the foundation Board of Directors in 2010. She has previously served the board as Development Chair. Vicky volunteers her time to the foundation in honor of her daughter who was diagnosed with AHC in 2003. Vicky lives in Mt.Prospect, Illinois with her husband, Andy, and daughters, Emma and Aria. Professionally, Vicky is the Director of Research at Willamette Management Associates in Chicago, Illinois. Prior to her tenure at Willamette Management Associates, Vicky worked in the law library of Kirkland & Ellis and at the Michigan State University Main Library. Vicky Platt – firstname.lastname@example.org
Sharon Ciccodicola has been the Medical Liaison since 2004 and also became the AHCF Coordinator in 2010. Sharon is also a Registered Nurse and currently owns Ciccodicola Case Management and record review. Sharon developed an interest in rare diseases while working in specialized maternal/child and pediatric nursing units. Sharon became interested in AHC through Richard George, the former AHCF President whose son has AHC. Sharon is married to Pasquale Ciccodicola who volunteers his services as the Foundation Attorney and they live in Detroit. They have two grown children, Dominic and Katie, and are enjoying being grandparents. Sharon Ciccodicola – email@example.com
Shannon Berta lives in Upstate New York with her husband and two little girls, Keira (5) and Autumn (18 mo). She has been on the Board of Directors since 2014. After Keira was diagnosed with AHC in 2010, she became determined to learn everything about AHC and how she could help her daughter live the best life possible. Shannon is currently working on her B.A. in Literature at Empire State College and works as an Executive Assistant with the NYS Office of Information Technology. She is determined to raise AHC awareness and find fundraising opportunities to benefit the children suffering from AHC. Shannon Berta – firstname.lastname@example.org
Bill Gerber joined the Board of Directors in 2011. He joined the pursuit for treatment and a cure for AHC when his son Sean was diagnosed with AHC in 2004. He is actively involved in fundraising and awareness on behalf of the foundation, including aligning his company’s philanthropic mission and corporate social responsibility initiatives to support AHC Foundation efforts. Bill lives in Hartford, CT with his wife Olga and three children, Sean, Shelby and Isaac. He is also the co-Founder of Accounting Department.com, a 10-year-old company providing virtual accounting, bookkeeping and controller services to small and medium sized businesses nationwide. Bill Gerber –email@example.com
Renee Hodes joined the AHCF Board of Directors in 2014. She has been connected with the Foundation since her daughter Lisa was diagnosed in 2001 and has been actively involved in fund raising for many years in the hope of finding a cure. Renee lives in Westchester County, New York with her husband Paul and their three children, Marissa, David and Lisa. Renee has worked professionally as a Food Service Manager and owner of a children’s party business. She is currently a stay at home mom. Renee Hodes – firstname.lastname@example.org
Mario R. Merida, MD. Joined the AHCF Board of Directors in 2015 in the pursuit of a treatment and cure for AHC.
Currently he is the Dean of the College of Allied Health Sciences at Stevens Henager college, and serves as patient advocate for Spinal Muscular Atrophy Families (SMA) FAME in Argentina and Chile. He has played an important role assisting with the evaluation and enrollment of patients for clinical studies through the University of Utah Neurology department. Dr Merida is married to Dr Sandra Reyna and they have 5 children ranging in age from grade school to adult (Mario, Julio, Ricky, Luis, and Abby) The whole family will be moving to Boston shortly where new positions await. Mario plays an important role in the clinical portion of AHCF Family Meetings and has been a great help as an interpreter for our Spanish speaking families. Mario Merida – email@example.com
Carol Presunka was an original Board member of IFHAC and retained board seat at AHCF when the two foundations merged in 2003. She has three children, and her son Alex has AHC. She lives in Campbell,California. Carol is a Trustee of the Cambrian School board in San Jose, CA. Professionally, Carol was a Project Coordinator for Parents Helping Parents, a non-profit that provides services to families with special needs. She has her MBA from Penn State and her BA from McMaster University in Hamilton, Ontario, Canada. Carol Presunka – firstname.lastname@example.org