P.O. Box 1883
Arlington Heights, Illinois 60006-1883
For questions about our chapter: email@example.com
If you are in need of a social worker, please contact Emily Zivin, HDSA Illinois Chapter Social Worker at 630-443-9876 or firstname.lastname@example.org
Susie Hodgson- President
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.
Barry Kahn-Vice President
Barry has served on the Illinois Chapter of the Huntington’s Disease Society of America (HDSA) for over 20 years, having served as President, Vice President & Treasurer. He also served on the National HDSA Board of Trustees for 6 years, 4 of which he served as Treasurer. Barry, along with his wife, Marilyn, have facilitated the Lake County Huntington’s Disease Support Group, held monthly at Advocate Condell Medical Center in Libertyville, for over 20 years. Barry has co-chaired many of HDSA’s events, including the HDSA Illinois State Convention & the Annual Hearts for Huntington’s Dinner Dance. Through his personal connection to Huntington’s Disease, Barry has been dedicated to finding a cure or treatment for HD. Barry and Marilyn love spending time with their six sons and nine grandchildren!
Charlotte Rybarczyk has previously served on the Illinois Board as President, Vice President, Treasurer, and Secretary. After a "year off" she is happy to return as Treasurer once again. She has lost her mother, five aunts and uncles and, most recently, her sister to Huntington's disease. After receiving a negative test result for HD she remains committed to the cause having two nephews still at risk. Charlotte also serves on the National Field Committee as a mentor to other HDSA chapters. She and her husband Steve live in Rolling Meadows and have two adult sons. .
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.
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.
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 Team Hope Walk committee and was previously on the golf outing committee. Her mom passed away from HD in 2003 and she has a younger sister with the disease. Erin tested negative for HD in 2008, ten days before her 23rd birthday. Erin has many relatives that are at risk, but they have not been tested for the disease. She attended Illinois State University and is currently working as a patient access specialist with Northwestern Medicine.She resides in Aurora and enjoys spending time with her dad, her boyfriend, and her close friends who have been awesome throughout everything!
Holly resides in Western Springs,Illinois, and holds a degree in Business Administration from Michigan State University. She has spent 15 years as a corporate trainer followed by several years in social services. For over 30 years she has been an active volunteer, board member, and fund raiser. She hopes to be part of an effort to recruit individuals not directly affected by HD in their families and become more involved with HDSA.
Dave is past president of the Illinois Chapter and lives with his wife, Susie, in Sandwich, Illinois. Dave has served as an adult co-advisor of the National Youth Alliance. Dave's late wife, Paula, died with Huntington's disease. They had four children at-risk for HD. Dave and Susie co-host the HDSA Illinois Chapter's annual Team Hope Walk. Dave amd Susie co-host the Central Illinois Support Group.
Marilyn has served on the Illinois Chapter of the Huntington’s Disease Society of America (HDSA) for over 20 years, most of which has been in fundraising. She has co-chaired the Annual HDSA Dinner Dance for the past 10 years, and served as co-chairman of the HDSA State Convention. Marilyn’s personal connection to Huntington’s Disease in her family has challenged her to find a cure or treatment for HD, and through this, she and her husband, Barry, founded and co-facilitate the Lake County HD Support Group at Advocate Condell Medical Center in Libertyville. Marilyn & Barry (and their dog, Parker) reside in Libertyville & enjoy spending time with their 6 sons & 9 grandchildren.
Larry Haigh joined the board in January 2017. Larry currently works for the University of Illinois Extension in the Ford and Iroquois Counties Office as the Iroquois County 4-H and Ford-Iroquois Agriculture in the Classroom, Program Coordinator. After attending the National Conference in 2016, and being a part of the NYA (National Youth Alliance) he wanted to help give back locally in Illinois. His Grandmother is currently fighting HD, and his mother tested negative for HD in the summer of 2016. Larry has many family members who are living at risk. It is his goal to help educate others about HD, and to fight for a cure. Larry currently resides in Ashkum (south of Kankakee), enjoys spending time with his family, and helping others. He plans to help spread HD awareness anyway that he can.
Maryann Moynihan Editor, Hopes & Dreams chapter newsletter
Maryann Moynihan has been active with the Illinois chapter of HDSA since 1992 as the editor of the award winning Hopes & 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
Emily Zivin, MSW, MPA HDSA Illinois Chapter Social Worker
Emily Zivin joined HDSA as the chapter social worker in August of 2015. She earned her Masters in Social Work at Columbia University in New York and a Masters Degree in Public Administration from New York University Wagner School of Public Service. She has worked in many different capacities within the health care field. This includes past experience as a clinical social worker at Lenox Hill Hospital in New York City, as a case manager for a managed medicaid company and as a clinical supervisor at the Cancer Center at Northwestern Memorial Hospital. She currently also works part-time for a virtual case management company. Emily has also served on the board of The ARK in Chicago and volunteers in many capacities at her local elementary school. Although her own family is not at risk from HD, she is excited to join HDSA and become active in the HD community. She lives in Wilmette with her husband, two children and dog.
Deb Boyd is the 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, Deb 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.
For information or questions about the Illinois Chapter
of the Huntington's Disease Society of America's web page
, please contact Dave Hodgson at email@example.com