Illinois Chapter-HDSA PLEASE NOTE OUR NEW ADDRESS!
PO Box 1454
Lake Villa, Illinois 60046
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
Larry Haigh- President
Larry Haigh joined the board in January 2017, and has served as the Board Vice President. Larry currently works for Herscher Community School District #2 as the Agriculture Instructor and FFA Advisor. After attending the National HDSA 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. Larry hosts the Central Illinois Support Group, and Chairs the Central Illinois Team Hope Walk. email@example.com
Dave Hodgson- Vice President
Dave is past president of the Illinois Chapter and lives with his wife, Susie, in Somonauk, Illinois. Dave has served as an adult co-advisor of the National Youth Alliance. Dave serves on the HDSA National Committee of Team Hope Walk Coordinators. Dave also serves on the chapter nominating committee. Dave's late wife, Paula, died with Huntington's disease. They had four children at-risk for HD. Dave and his wife, Susie, co-host the HDSA Illinois Chapter's annual Team Hope Walk. Dave and Susie's family is a blended family as they both lost their respective first spouses to HD. firstname.lastname@example.org
Andy Hucker- Treasurer
Andy is a financial analyst at AbbVie Biopharmaceuticals in North Chicago, Illinois. Andy, who tested negative for the HD gene at Chicago Rush Hospital HD program’s COE in 2013, is one of three siblings whose father tested positive for the HD gene post-mortem in 1998. He lives in Lindenhurst, IL, with his wife, Sandi, and three children, Marshall, Skylar and Logan. He has served on the HDSA Illinois Chapter's annual Team Hope Walk Board since 2013. email@example.com
Mary Bos- Secretary
Mary Bos first joined the Illinois Chapter Board In 2004. She has served as Assistant Treasurer and Treasurer. Over the years, Mary has worked on numerous committees including the the Team Hope Walk which she and her entire family participate in-in memory of the family members they lost to HD. Mary lives in Carol Stream where she works as a Daycare Provider. firstname.lastname@example.org
Charlotte Rybarczyk has previously served on the Illinois Board as President, Vice President, Treasurer,and Secretary. Remaining on the Illinois Board, she chairs two events; the Spring Fling and the Baggo tournament, and sits on the nominating committee. Charlotte also serves on the National Field Committee as a mentor to other HDSA Chapter leaders. She has lost her mother, five aunts and uncles, her sister and a cousin to Huntington's disease. After receiving a negative test result for HD she remains committed to the cause having two nephews still at risk. She and her husband Steve live in Rolling Meadows. email@example.com
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.
Ann Terry was elected to the Chapter Board in September of 2018. Ann's father passed away two years ago from HD. She and her brother have not been tested. Ann resides in Aurora, Illinois, and is a certified companion caregiver. Ann earned a Masters Degree in Busines from Western New England College. Ann is excited to be on the Illinois Board and looks forward to being involved in any way possible to support the HD Families of Illinois.
Wayne Galasek is the founder and President of the American Insurance Schools, co-founder/President of the Oak Park Invitational Charity Golf Tournament, and President of the Chicago Tour Guides Professional Assn. He resides in Oak Park with Judy, his wife of 43 years who tested positive in 2005. Judy’s father, grandfather and several uncles all died with HD. Wayne and Judy’s daughters and 3 grandchildren along with a number of contemporary cousins are living at risk. Judy is currently participating in the Signal Study. The entire family is dedicated to raising awareness, generating research funding and providing support of local families afflicted with HD.
Sarah Cozad is a new member to the Illinois Chapter and serves on the committee that kick-started the 2019 Inaugural Hope Walk in Galesburg, IL and plans to help keep the light burning in her “back yard”. Sarah (whose parents do not carry the Huntington gene) is one of four children; a brother: same father and two sisters: different father. Both of Sarah's half-sisters; who tested positive over 10 years ago, are living with and fighting HD. Between her two sister’s combined, there are seven children/grandchildren that may be at risk. Sarah is currently employed at Blick Art Materials and resides in Oneida. She spends her days nurturing her children and has a long history of being an active volunteer in her community, a board member for a variety of causes, and an avid fund raiser. Sarah is overjoyed to be on the Illinois Board and passionate about raising HD awareness and funds to support other HD families’ in need of a voice. firstname.lastname@example.org
Arvind Sreedharan has more than 29 years of pharmaceutical and biotechnology experience in business and commercial roles of increasing responsibility at Ciba-Geigy, Abbott Laboratories, Ovation Pharmaceuticals, Lundbeck, Auspex Pharmaceuticals, and AveXis. Presently, Mr. Sreedharan is Senior Vice President of Business Operations at Neurogene, a gene therapy development company. He has significant experience in CNS disorders and multiple orphan diseases. Throughout his career, Mr. Sreedharan has supported and partnered with numerous rare disease advocacy groups. He also served on the Huntington’s Disease Society of America board of trustees for six years from 2012-2018.
Erin first joined the Illinois Chapter Board in 2013. She served on the Team Hope Walk Committee in the past and currently serves on the Spring Fling Committee and the Nominating Committee. She has also worked in Advocacy by lobbying for the Rare Disease Commission bill in Springfield in 2016 and was successful in getting a Chair and Co-Chair for the bill. Erin lost her Mom to HD in 2003 and her Grandma in 2004. Erin tested negative for HD in 2008. Her goal is to bring awareness to others about HD and continue to provide support to HD families. Erin works as a Claims Service Rep for the Illinois Health and Hospital Association and currently resides in Crest Hill with her (very supportive!) husband, Sean and their fur baby, Hannah.
Maryann Moynihan Editor, Hopes & Dreams
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 Regional Development 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