Brock Benroth is a small business owner, and the married father to two daughters: Kate, who had CLN2 and is a Batten angel and her older sister Lauren, who is a carrier. He has joined the board because through his family’s journey with Kate, her participation in a clinical trial, his experience as the Ohio BDSRA chapter president, and their fundraising efforts he has a good connection with other Batten families and the BDSRA that will allow him to put the passion he has for helping people to good use.
Mike Collins works for Numotion as an Assistive Technology Professional (ATP) and Certified Rehabilitation Technology Supplier (CRTS) in Mokena Illinois. Mike has been a member of the board since 2011 and brings his industry knowledge and experience to the board in order to facilitate an exchange of information between Batten families and industry professionals in the challenges we face with Batten Disease. Mike is dedicated to understanding what families are looking for from the board. Mike and his wife Dawn lost their daughter, Becca in 2015.
Jennifer Dilley lives in Royal Oak, MI and owns a contemporary furniture store. She graduated from Michigan State University with a degree in Merchandising Management in 1994. She worked for Neiman Marcus as a buyer and then in senior management. She joined her parents in the furniture business in 1998. She is married to a very supportive husband and has two children. Megan was diagnosed with late infantile in January of 2015 and she also has an unaffected son, Matthew. She became a board member because she wanted to make a difference for children and their families. She is interested in research, making connections and supporting the work of the BDSRA trying to find a cure for all forms of Batten Disease.
Tony Ferrandino is a Financial Advisor at Merrill Lynch in Newtown, PA. Though Tony has been a board member since 2012, it is his experience as a Batten father that first brought him to the organization in 2007. Tony is dedicated to the Board’s mission to help families affected by Batten disease and to continue research toward a cure. Tony’s son Drew has passed away.
Donna Fogle is a FL Licensed Health Insurance Agent/Advocate/Consultant/Lobbyist and Senior Advisor for Employer Sponsored Benefits with The Bailey Group in St. Augustine, Florida. Donna brings to the board extensive experience in navigating the healthcare system, patient advocacy, state and national legislation and fundraising. Her experience comes from time spent as a former medical coder/biller, her current position as an insurance agent as well as a medical consumer for a child with special needs. Donna also brings the passionate drive of a mom on a mission and advocates for the advancement of newborn screening for RDLA and the rare disease community. Her daughter Kourtney passed away in 2010.
Rob Geer serves in a business development role for Randstad Technologies in Grand Rapids, Michigan. He has been on the board for BDSRA for a number of years serving as President, 1st Vice President, head of the search committee for the new Executive Director, board selection committee and has assisted with technology, web presence and social media presence. He is also a board member for the local University of Michigan Alumni group in Grand Rapids, committee member for Helen Devos Children’s Hospital Patient and Family Advisory Committee and has had multiple board positions on a variety of technology groups in Michigan. Rob is married to Chris and is the father of four, including Jacob who has been diagnosed with an unknown variant of Batten Disease.
Kathryn Haller is an attorney with a focus on health law and disability law. Previously, she served as Associate General Counsel for The Ohio State University Medical Center. She recently retired from the position of Chief Legal Counsel to the Ohio Department of Developmental Disabilities. Kathryn has been on the Board since 2015. She brings her expertise to support the very impressive work accomplished by the BDSRA, it’s board and staff and all of the families who are the foundation of BDSRA.
Bob Jensen is a Partner and Director of Private Equity Services at RSM, LLP in Chicago, Illinois. As a grandfather of a child who passed away who was affected by LINCL Bob is passionate about BDSRA and its mission. His personal experience with the disease will help identify the issues facing Batten families and how the board can best help them. Bob brings to the board experience in fundraising with several nonprofit organizations. With this experience Bob plans to focus on alternative funding and economic support. Bob also has an interest in increasing corporate involvement and building a strategic plan to put Batten disease at the forefront and raise awareness.
Chad Killen is the brother of the late Bret Killen who had late infantile and who passed away in 2004.Chad has been in the BDSRA organization since 1990 and has attended many conferences in the past. He has been a SIB leader for 10 years and is involved in the organization in many different ways. Chad and his wife, Kim were married in 2010 and have a 3 year old daughter, Charlotte. Chad is currently employed as a sales manager for Cincinnati and Kentucky for Ferguson waterworks.
Trent Lewis is a Producer/Director Media Services at Vestil Manufacturing and is a small business owner and father of 3 and lives in Fort Wayne, IN. He lost his son Zane (CLN1) in 2005. Trent produced a documentary on Batten Disease in 2010. He joined the board because he wants to give back to the Batten Disease community, and serving on the board is a way to honor Zane’s legacy. With his connections in media and video production, he hopes to raise awareness. He would like to create new videos on the status of research and development and create more stories about families or create videos on how to help manage care be a resource for parents.
David Pearce serves as President of Innovation and Research at Sanford Health and Professor, Department of Pediatrics, Sanford School of Medicine of the University of South Dakota. He has volunteered his time with BDSRA for the last 20 years in a number of ways. He has attended each BDSRA annual conference during this time. He has served on numerous advisory boards related to his employment and has related activities in research and in local communities in regard to youth sports.
Darlene Royalty is currently the Office Manager for Frericks Gardens, Inc in Quincy, Illinois. As a mother of three children with Batten Disease who have all passed away, Darlene brings a unique and passionate perspective to the board. Her experience as a Batten mother gives her the knowledge to help families through their own journeys. Darlene believes strongly in “Taking Care of the Caretaker” and is dedicated to building up chapter support and working to increase membership.
Barbara Wuebbels is currently Chairman of Professional Patient Advocates in the Life Sciences (PPALS) and is a patient advocacy consultant. She is a founding member of the Wellness Community of Central Arizona, a non-profit that provides free counseling and support to patients and families with cancer. Along with the director she was responsible for raising over $1 million for operating expenses. She also previously served on the parish council of St. Daniel’s Catholic Church and the Arizona Biomedical Research Commission, where she was appointed by the governor to review scientific research requests from universities and organizations within the state of Arizona.