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.
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 served on the ULF Board since 2012 and has been attending the annual conference for over 30 years.
“My role with the ULF is to talk with people who have questions on how to deal with ALD/AMN. My goal is to see that the conference has information available for the ALD/AMN men and women,” Doug said.
Doug played wheelchair softball and basketball. He was also a member of the USA Paralympic shooting team, having competed in two world championships in Korea and Switzerland. His hobbies are hunting and playing cards.
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, Minnehaha Springs, West Virginia
Rita became a board member in 2013 and currently sits on the Executive and Nominating Committees.
She was associated with ULF for many years before choosing to become an active member. Rita has 4 sisters; and their only brother, James, was diagnosed with Addison’s Disease at age 10. Later, as an adult at age 24 he was diagnosed with Adrenoleukodystrophy. Leaving a devastated family, James passed away two years later at age 26.
Rita has a B.A. in Elementary Education from Southeastern University and M.A. in Reading from West Virginia University. Following a career in elementary education, she chose to further her education by earning a law degree from West Virginia University College of Law. After graduation, she worked for the West Virginia Supreme Court of Appeals until she was appointed by the Governor to serve as an appellate judge on the Workers’ Compensation Board of Review, a position she currently holds.
“I am passionate about newborn screening and doing all I can to help find cures for the Leukodystrophies,” Rita said.
Rita enjoys yoga, Pilates, downhill skiing, and swimming.
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. In her spare time, she enjoys spending time with her grandchildren.
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.
Colleen Kintner, Redlands, California
Colleen and her late husband, Dr. William (Bill) Kintner, became co-vice presidents of the ULF in 1986. Bill became president in 2012 upon the death of Paula Brazeal. Colleen remained as vice-president.
Due to Bill’s illness, they were understandably unable to be on the board for a number of years.
Colleen’s step-daughter, Kristy, was affected with Metachromatic Leukodystrophy living to be almost 23 years old.
Colleen is a licensed Marriage, Family, Child Therapist working for the past 20 years in
the Behavioral Medicine Department at her local hospital.
“My passion is to helps others on this journey have hope for the future. In my spare
time I like to walk my dog, be involved my adult son and with friends,” Colleen said.