Charlotte Rybarczyk, Chapter President, is a former Assistant Treasurer, Treasurer, Secretary, and Vice President, being active on the board for over sixteen years. She has lost her mother, 5 Aunts and Uncles and, most recently, her sister to Huntington’s Disease. She is “at risk” for HD herself. Charlotte serves as an Ambassador for Lundbeck Inc., speaking nationally about the chorea associated with Huntington’s Disease. It is her hope that sharing her story with others will help them in their struggles of day to day living with HD. Charlotte is an independent consultant for a well known international candle company. She and her husband Steve live in Rolling Meadows and have two sons who are serving in the U.S. Army.
John Cuccinotto, Vice President, is the Chairman for the Hoop A Thon. His Father passed away from HD IN 1997. He has eight brothers and sisters, with three siblings diagnosed with HD and the other five at risk. John brings over seven years experience in the National fundraising world from The Orthopaedic Research and Education Foundation and Global Sports Marketing & Events.
For the last five years John has been involved in two businesses. The first one is in an Operations position at Sethness Greenleaf, Inc. and then has a successful Real Estate Business as a Realtor with Wiseman & Associates Real Estate in Naperville. John is married with two children and resides in Lombard.
Mary Bos joined the Board, as Treasurer, in February 2006. She lost her father to HD and currently has 2 brothers that are battling this disease. Mary lives in Carol Stream where she works as a Family Childcare Provider. In her "spare" time she enjoys biking, reading, yoga and spending time with family and friends.
Peggy Monson joined our board in November 2011 and has taken on the role of Assistant Treasurer. She has no history of Huntington’s Disease in her family. Although the disease may not be in her family, it is in the family of a very close and dear friend. Peggy has volunteered and served as Treasurer on several youth Athletic Organizations in her community. She currently works at home for a business in Hoffman Estates. She and her husband John live in Rolling Meadows and have 2 sons. firstname.lastname@example.org
Joe Wiedemann, Secretary, is a civil engineering graduate of the Illinois Institute of Technology (BSCE 1981) and whose firm designs heavy civil projects including major tunnels and deep excavations. Huntington’s Disease has been a lifelong experience for Joe. He was the last of five children, and saw his mother, brother and two sisters die with HD. Eight nieces and nephews are at risk for HD, or are gene positive. Joe joined the Illinois Board in 2011, with a desire to learn how to assist our fellow HD community, and to help promote the Society’s agenda. Joe and his wife Sallie live in Elgin, and have three adult children and two grandchildren.
Daniel Born joined the HDSA – Illinois board in 2005. He is a lecturer at Northwestern University's School of Continuing Studies, and also teaches English at Dominican University in River Forest. Born is the author of The Birth of Liberal Guilt in the English Novel, and editor of several books, including The Great Books Foundation Science Fiction Omnibus and The Seven Deadly Sins Sampler.
Born received his PhD in English literature in 1990 from the Graduate Center of the City University of New York. He was an associate professor at Marietta College where he earned the McCoy Award for Teaching Excellence twice, and later served as chief of staff and vice president at the Great Books Foundation. He lives in Chicago.
Marilyn Kahn has been a Board member for over 10 years. She actively enjoys helping with many of the Board’s fundraisers and helps run the Lake County support group with her husband, Barry. Marilyn enjoys spending her free time with their family, which includes 6 sons and 9 grandchildren.
Barry Kahn has been a member of the National HDSA Board of Trustees. He has also served as Treasurer of National HDSA. Barry has been a Board member for over 10 years, of which 6 of those he served as President. Barry, along with his wife, Marilyn, run the Lake County support group . Barry and Marilyn enjoy spending their free time with their family, which includes 6 sons and 9 grandchildren.
Gus Marchetti has been a board member for over 11 years. His first wife, Pat, and his daughter, Pam, have both been lost to Huntington’s disease. He now has grandchildren who are at risk. He enjoys golf and chairs our annual golf outing. Gus recently retired after many years as a consumer loan officer at a bank. He hopes to spend his newly acquired free time making the annual golf outing an even bigger success. Gus resides in Lindenhurst with his wife, Mary. Combined they have 5 children, 7 grandchildren, and 5 great grandchildren.
Tom Barr is an electrical engineer who designs, installs and supports industrial control systems. He received his Bachelor of Science from the Illinois Institute of Technology in 1973 and is a Registered Professional Engineer in Illinois and Florida. Tom was caregiver to his wife Bonnie a former Bank Officer who died in 2002. He has two sons Alex and John.
Susie Hodgson is a Case Manager and an LPN at Kindred Hospital in Sycamore, Illinois. As a nurse, Susie has devoted her life to caring for others with the majority of her time as a nurse in hospitals caring for the chronically and terminally ill. She has also spent over 25 years caring for family members and loved ones with HD at home. She served on the HDSA Oklahoma Chapter Board during the 1990s. Susie is past President of the Illinois Chapter and has been a member of the Illinois Chapter Board for over 10 years.. Susie is a past adult Co-Adult Advisor for the HDSA National Youth Alliance (NYA) and for the HDSA Illinois NYA. Susie co-hosts the Central Illinois Support Group with her husband, Dave. Currently Susie lives in Sandwich, Illinois.
Dave Hodgson has been a Board Member of the Illinois Board since 1989, and he served as President of the Board for 6 years. Dave was caregiver to his wife, Paula, who died with HD after suffering with HD for 19 years. Dave has 4 children, all at risk, and lives in Sandwich, Illinois, with his wife, Susie Hodgson. Dave is past adult advisor for HDSA’s National Youth Alliance. He and Susie co-chair the Illnois Chapter of HDSA's TEAM HOPE-Walk For A Cure.
George Stecyk, having participated in the IL Chapter’s “Team Hope Walk for a Cure” since its inception along with other fund raising events did not seem enough. So wanting to help make a difference in a bigger way, George offered his name as an IL Chapter Board member and is pleased to be part of the team working hard to support research for a treatment and cure for HD and help in supporting HD families in a wide variety of ways as is our mission. George and his wife, Jan have lived in Naperville for more than 30 years. They have two adult children, John & Kathie, both of whom have walked and helped in other ways to raise money for our cause. George’s other passions include flying, sailing and cycling.
Danielle Karlson-Perrott was honored to join the Illinois Chapter of HDSA in September of 2012. Danielle's husband Charles and mother-in-law Pam have both been diagnosed with HD. Shortly after Charles was diagnosed five years ago, Danielle joined forces with Charles and Pam to form Team Perrott to plan and run events to raise funds for HD on their own.
Danielle is excited to use her skills as a marketer to energize the events planned by the Illinois chapter and her concept, design and operational experience to create fresh, new fundraising opportunities for the HD cause. Team Perrott will continue their individual efforts as well.
Danielle and Charles have a daughter named Willow and they live in Algonquin.
Jennifer Placek joined the board in September 2013 and currently serves on the Team Hope walk committee. She has an uncle by marriage with Huntington’s disease. Both her uncle and all of his siblings are affected, leaving five children at risk as well as three grandchildren. Jennifer graduated from Michigan State University in May 2013 and currently lives at home with her parents in Woodridge. She is preparing to apply to graduate school to receive her masters in genetic counseling and to one day become a genetic counselor.
Erin Bentz was excited to join the Illinois chapter board in May 2013 after attending the state convention in March 2013. She currently serves on the Celebration Of Hope Committee and just completed her first gala! Her Mom passed away from HD in 2003 and she has a younger sister with the disease. Erin tested negative for HD in 2008, 10 days before her 23rd birthday. Erin has many relatives that are at risk, but have not been tested for the disease. She attended Illinois State University and is currently working as a patient services representative for Cadence Health. She resides in Naperville and enjoys spending time with her Dad and close friends who have been her support system through it all.
Maryann Moynihan has been active with the Illinois Chapter of HDSA since 1992 as the editor of the award winning Hope and Dreams chapter newsletter, and she also served on the Illinois Board for a period of time. Her grandfather, uncle, and mother have all been lost to the disease, and she has a sibling who is gene positive. She herself is at risk. Maryann works in downtown Chicago as an Executive Assistant and lives in Calumet City, Illinois
Deb Boyd, HDSA Upper Great Lakes Region Director. Most recently, Deb had a distinguished 15-year career with First Candle/SIDS Alliance, where she advanced through numerous managerial positions, including Chapter Representative for the State of Michigan, Field Service Director for the Midwest Region, and Vice President of Field Services, before being promoted to Executive Director, a title she held for seven years. Among her key accomplishments at First Candle, Ms. Boyd was instrumental in revitalizing the community level infrastructure of First Candle, and in bringing volunteer and staff development back as a priority for the organization. Deb is a passionate advocate for families and is a true asset to the HD community of the Great Lakes.