Robert Rauner, Lincoln, Nebraska
Robert is the parent of a son Kevin, who passed away from ALD. His son Paul has AMN. Robert has been involved with the ULF since 1994 and been a Board Member since 2000. He has served as Treasurer of the ULF and now serves as President. He is a retired UPS truck driver and is now devoting his retirement to the future of the ULF. Robert’s hope for the future is to help researchers find treatments and cures for the leukodystrophies, as well as to support families affected by the diseases.
Ron Chapleau, Kincardine, Ontario, Canada
Ron has been a member of the ULF Board since 2007. He currently serves as Vice president and sits on the Executive and Nominating Committees, as well. He graduated from the University of Toronto in 1990 with a B. Sc. in Pharmacy and has practiced in numerous locations throughout the province of Ontario. Ron currently lives in Kincardine, where he works as a pharmacist in a small independent pharmacy. He is married and has three children, one of whom was diagnosed in 2000 with megalencephalic leukoencephalopathy with subcortical cysts (MLC), which he continues to live with to this day.
Alan Fingeroot, Bellevue, Washington
Alan Fingeroot is a parent of a son Andy, who passed away in 1998 from Canavan’s Disease at the age of 15. Alan has been a member of the ULF since 1987 and a board member for 15 years. Alan has been serving as Treasurer for the past 4 years. He has worked for Safeco Insurance for the past 35 years as a Senior Claims Adjuster.
Margaret Halter, Mansfield, Ohio
Doug Bermel, Princeton, Minnesota
Doug has been living with the progression of AMN for over 35 years. He had four younger brothers, who died from ALD. Doug has been serving on the ULF Board since 2012 and has been attending the annual conference for 30-some years. His role with the ULF is to talk with people who have questions on how to deal with ALD/AMN, and he is active on the Conference Committee.
Joe Changle, Carnegie, Pennsylvania
Born and raised in Pittsburgh, Joe attended community college and began working as a mechanical designer in 1977 and continues that career today. He is the co-holder of 10 U.S. Patents and sole holder of 1 U.S. Patent. Joe was the owner of Changle Electric from 1983 to 1999.
He was appointed to the ULF Board of Directors in 2012. He was the Grandfather of Dylan Joseph Changle. Joe and his wife Joyce have 3 children. While they were growing up, Joe was involved as a Boy Scout Leader and as a volunteer with the P.T.A., Athletic Association, and Band Boosters.
As a co-founder of Dylan’s Quest for the Cure, which promotes disease awareness and raises money for Krabbe research, Joe and his partners meet families when they arrive in Pittsburgh to meet with doctors and provide them with home-made blankets, which they call “Blankets of Love.” This is their message to let families know that they are not alone and that they are loved, as they travel together on this journey. Their fundraising has included dances, selling cotton candy and popcorn at festivals, collection boxes in stores, and partnerships with local businesses, where they pass out ULF pens and other items and talk with passers-by to raise awareness of leukodystrophy.
Joyce Changle, Carnegie, Pennsylvania
Joyce lives in Pittsburgh. She became involved with the ULF in 2009 when her grandson Dylan (4/15/09-12/22/09) was diagnosed with Krabbe Disease in August of 2009. She was appointed to the Board of Directors in 2012.
Joyce began her nursing career in 1974 and graduated from nursing school in 1977. Until she became disabled in 2012, her 38 years in the field spanned pediatrics, emergency room, I.C.U., drug and alcohol, long-term care, and admissions and case management. Most recently, Joyce had been promoted to a position responsible M.A. and Medicare Reimbursement for a 144-bed nursing facility.
While their children were growing up, Joyce was involved as a Girl Scout leader and a Boy Scout assistant and was active with PTA, Athletic Association, and Band Boosters. As a co-founder of Dylan’s Quest for the Cure along with her husband Joe and their son Joe, Joyce and her partners host many activities to fundraise and to promote disease awareness.
Rita Hedrick-Helmick, Charleston, West Virginia
Rita’s only brother, James, passed away from ALD. She has been associated with ULF for a number of years and was appointed to serve as a member of the board in 2015. Prior to that, Rita was an active volunteer with the National Multiple Sclerosis Society Blue Ridge Chapter.
Rita received her B.A. from Southeastern University in Lakeland, Florida and her M.A. from West Virginia University. Following a teaching career in elementary education, Rita resigned to pursue a legal education. She received her J.D. from West Virginia University College of Law. Rita worked for the West Virginia Supreme Court of Appeals until she was appointed by the Governor to serve as a Member of the West Virginia Workers’ Compensation Board of Review, a position she still holds.
Yvonne Rauner, Lincoln, Nebraska
Yvonne is the parent of a son Kevin, who passed away from Adrenoleukodystrophy (ALD). Her son Paul has Adrenomeyloneropathy. Yvonne has been involved with the ULF since 1994 and has been a board member since 2000. She has been a self-employed hairdresser for over 40 years and enjoys her profession. Yvonne’s hope for the future is to help researchers find treatments and cures for the leukodystrophies, as well as to support families affected by the diseases.
John Wolf, Aloha, Oregon
John has been a member of the ULF Board of Directors since 2007. He works as a software engineer in the banking industry in Portland, Oregon. John is the father of a daughter, Ashley, age 22, who was diagnosed with Cerebrotendinous Xanthomatosis (CTX) in 2004. John serves as a patient liaison and works with other members of a patient advocacy team to advocate for individuals world-wide who are CTX-affected. This team maintains relationships with physicians, patients, and the manufacturer of the treatment for the disease. These efforts continue to ensure a sustained supply of treatment for CTX, help raise awareness of CTX, and contribute to other important areas, such as Newborn Screening and determining disease prevalence. John also has a son Jacob, 19, who is unaffected.
Bobbi Burgstone, Executive Director, DeKalb, Illinois
Bobbi joined the ULF staff in August 2015. She brings 20 years of experience in non-profit senior management roles. Bobbi earned her B.S. at Southern Illinois University and her M.S. at Northwestern University. As Executive Director, Bobbi strives to assist families affected by the leukodystrophies and to raise substantial funding for vital research studies.