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. His hobbies include golf and fishing.
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. His wife, Marla, has been a board member but is not currently serving. Together they have three children: Alexandra (age 21), Aidan (age 20), and Liam (turning 18 in Oct. of 2018), 2 of which are unaffected. Aidan, was diagnosed with megalencephalic leukoencephalopathy with subcortical cysts (MLC) at about the age of 2.
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, where he enjoys interacting and taking care of his patients.
“I have been involved in healthcare for almost 30 years now. For the first 8 of those, it was strictly as a deliverer of information and care to others. When Aidan went through the long and gut wrenching differential diagnosis process, it brought a new awareness to me of how absolutely critical information that you can trust is and how even more importantly, that it is delivered in a compassionate and empathetic manner. I am eternally grateful to my ULF family and the many physicians and other health professionals who have been there for us time and again, not only for Aidan , but for the rest of my family as well as we continue this challenging journey together. I hope, in some small way, to do likewise for others,” said Ron.
“My main extracurricular hobby involves sports both on a participation level (hockey, soccer, tennis, volleyball) and on a coaching one (hockey, soccer, rugby) although as my youngest prepares to leave for post secondary schooling those days are coming to a close, at least for a few years. I also enjoy reading, traveling, listening to music and podcasts, watching sports and movies and exercising. I also write a weekly health related column for some local newspapers and websites.”
Alan Fingeroot, Bellevue, Washington
Alan has been on the ULF board for about 15 years, and treasurer for about 6 years. He and his wife, Michelle, joined the ULF in 1987 when they heard about the foundation and the work they were doing to identify Canavans disease. They were involved with the early research which led to their son, Andy, being diagnosed in 1988. They were able to be involved with the carrier testing and gene mapping, all as a result of the ULF.
A graduate of the University of Washington, Alan retired from Safeco Insurance in December of 2016 after 36 years in claims. His wife Michelle, spent 9 years working at the local hospital until she also retired at the end of 2016. Unfortunately, she passed away in June of 2017.
“Having spent 15 years with my son and dealing with his ongoing medical problems, and dealing with my wife’s 8 year battle with cancer, I have a much deeper appreciation for what families with medical conditions go thru and I am a strong advocate for improved medical care as well as providing moral support to those families,” Alan said.
Alan enjoys gardening and tinkering on his work bench. He also enjoys baseball, soccer, and football. He is also on a bowling team, but admits to not being very good! Travel is also one of his passions, but is currently on hold with Michelle’s passing.
Margaret Halter, Mansfield, Ohio
Margaret became aware of the ULF after her husband, John, received a diagnosis of AMN in 1989. Margaret decided to join the ULF Board of Directors in 2015 and was named Board Secretary shortly after.
She began her career after her children started school and holds degrees in Education, Criminal Justices, and Human Services. Margaret started in the non-profit field, then was hired by the Department of Juvenile Corrections as a Unit Administrator, where she worked for 15 years. Currently, she works as an Investigator for the Ohio Department of Developmental Disabilities.
“My passion lies with advocacy of the newborn screening in my state of Ohio, progress of treatments and research for the adults with AMN, and supporting the caregivers (wives) of those affected.
I live on a 60 acre farm which I enjoy gardening, playing with my fur babies and spending time with the grandchildren,” Margaret said.
Joyce Changle, Carnegie, Pennsylvania
Yolanda Chacon, Bakersfield, California
Claudette Collier, Powers Lake, Wisconsin
Kristie DeMarco, Windham, Maine
Dr. Joseph Hacia, Los Angeles, California
Dr. Stephanie Keller, Atlanta, Georgia
Colleen Kintner, Relands, California
Sa Von Rudenick, Minnetonka, Minnesota
Donna Skwirut, Palos Park, Illinois
John Wolf, Aloha, Oregon