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Connecting on a personal level is an important part of sharing ideas and helping our Chapter to grow. 

HDSA Upper Great Lakes Regional Director

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We welcome Deborah Boyd to the HDSA team.  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 we know will be a true asset to the HD community of the Great Lakes.

 

CHAPTER OFFICERS

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Susie Hodgson

President

Susie Hodgson

Cell--(815) 508-2370

Home--(815) 498-6092

sue_angels@softhome.net

Susie 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.  Susie cared for her late husband’s mother, who had HD, until her death in 1990, one month after her late husband, Bud, was diagnosed with HD.  She cared for Bud at home with the help of her three sons until his death in 1999.  Susie met her new husband Dave, in a HD On-Line Support group called Hunt-Dis, and in 2002, became a caregiver for his late wife Paula.  Susie and Dave now care for Susie’s oldest son Bob who has HD.  Susie’s middle son, Joe, tested negative for HD in 2004, and her youngest son, Buddy, was adopted so is not at risk.  She served on the HDSA Oklahoma Chapter Board during the 1990s.  Susie has been a member of the Illinois Chapter Board for over 2 years and has served as Vice President for the last year.  Susie is Co-Adult Advisor for the HDSA National Youth Alliance (NYA) and for the HDSA Illinois NYA.  Currently Susie lives in Sandwich, Illinois with her husband Dave and her son Bob.

 

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Charlotte Rybarczyk

Vice President

Charlotte Rybarczyk

(847) 259-3593

flameboyant1@comcast.net

Former Assistant Treasurer, Treasurer and Secretary, active on the board for over ten years.  Charlotte does sales for a well known international candle company.  She and her husband Steve live in Rolling Meadows and have two sons in college.  Charlotte is at risk and helps to care for her sister who has HD. 

 

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Mary Bos

Treasurer

Mary Bos

(630) 830-5329

mbos@netzero.com

Mary Bos joined the Board as Treasurer in February 2006.  Mary has worked as a Family Child Care provider for the past 16 years.  Prior to that she worked in all areas of accounting at the Corporate level and also as an assistant to an independent CPA.  Prior to joining the Board, Mary participated in several fund raisers for HD.  She encourages others to “get involved”.

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Dave Hodgson

Secretary

Dave Hodgson

(630) 386-3928

spiketdog@softhome.net

Dave Hodgson is a department manager for Phillip's Flowers in Westmont, Illinois. Dave 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 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 and Susie co-chair the Illnois Chapter of HDSA's TEAM HOPE-Walk For A Cure.

 

BOARD MEMBERS

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Tom Barr

Thomas Barr

(708) 606-9932

thomasbarr@aol.com

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.

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Dan Born

Daniel Born, Ph.D.

(773) 275-5827

dankborn@gmail.com

Dr. Daniel Born is editor of The Common Review, the quarterly magazine of the Great Books Foundation, where he also serves as Vice President for Post-Secondary Programs.  He is author of The Birth of Liberal Guilt in the English Novel:  Charles Dickens to H. G. Wells, as well as essays and articles that have appeared in publications including The New York Times, Education Week, and Utne.  He lives in Chicago with his wife, Mary Classen, a former family therapist and social worker who served on the HDSA board of the New Jersey chapter in the 1980s, and his daughter Elizabeth is an undergraduate at the School of the Art Institute of Chicago.

 

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John Cuccinotto

John Cuccinotto

630-873-0052

john@wisemanrealestate.net

 

John Cuccinotto 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.

                                                                        

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Marilyn Kahn

Marilyn Kahn

(847) 438-2403

marilynkahn@comcast.net

 

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 Zurich support group with her husband, Barry.  Marilyn works full-time for Pactiv Corporation and enjoys spending her free time with their family, which includes 6 sons and 9 grandchildren.

 

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Gus Marchetti

Gus Marchetti

(847) 356-2880

augustinemarchetti@sbcglobal.net

Gus has served on the HDSA board for over 8 years and has chaired the annual golf outing 7 times. He and his wife, Mary, live in Lindenhurst and Gus is a bank officer at State Bank of the Lakes in Antioch. His first wife died of HD and he has two daughters, one at risk and the other, with HD, whom he helps to care for. Gus also has 4 grandchildren at risk

 

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Sharon & Clarence Wiese

Sharon & Clarence Wiese

(630) 443-9579

cwwiese@sbcglobal.net 

 

Sharon and Clarence joined the board of the Illinois Chapter of HDSA in 1977 when it was known as the Committee to Combat Huntington’s Disease.  During the past 29 years, they have performed many functions for the Chapter.  Sharon organized and hosted the Annual Brunch for more than 10 years and Clarence was President for 3 years.  For over 20 years they have acted as facilitators for Support Groups in Rockford, Peoria, Champaign, Lansing and Quincy. They have conducted training sessions in nursing homes in Northern Illinois for than 10 years.  In addition to these activities, Sharon has participated in numerous drug studies looking for ways to improve the care and treatment of HD.  Clarence has answered the Chapter phone and maintained the name and address file. In 1995, Sharon was diagnosed with HD.  Cathleen, their oldest daughter was diagnosed in 1999. Cathy died on October 17, 2006.They have two other daughters who have tested positive for HD.  In 2004, their two nieces were diagnosed with HD.  Their son, youngest daughter, six grandchildren, two nephews and a niece are at risk.

 

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Bob Leck

Bob Leck

630-346-5114

warghoullives@yahoo.com

 

Bob Leck joined the Illinois Board in 2008.  Born in Seminole, Oklahoma, Bob grew up helping his Mom take care of his HD positive father.  A U.S. Air Force veteran, Bob is a member of the National Youth Alliance and serves on the Board as the Illinois representative of the NYA. Bob was chosen as the HD Person of the Year at the 2008 National Convention in Pittsburgh, Pennsylvania.  Bob lives in Sandwich with his Mom, Susie, and step-dad, Dave Hodgson.

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Diane Ray

1-815-355-4125

d_ray5150@yahoo.com

Diane Ray joined the Illinois Board in 2008.  She has been associated with HD since 1968 while caring for her mother-in-law who had HD.  She married Marshall Ray in 1969, and he was at risk until he was diagnosed in 1996. Marshall died in March of 2005. They had one son, Todd, who was at risk, and tragically died in March of 2007.  Diane currently resides in Joliet and helps care for Susie and Dave's son, Bob.  Diane is very adept at re-habbing a home for a disabled person.

 

 

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                                             Tami Friedman

Tami has been involved in the Pharmaceutical industry since 1992. Since that time,she has had the opportunity to launch over 13 important products in the United States, while always getting involved at the grass roots level, creating awareness and volunteering with various support groups and foundations.

Tami’s true passion is in the area of CNS, and movement disorders. Tami had the unique opportunity to work closely with the late Dr. Harold Klawans, as well as spend the day with “THE” Muhammad Ali, at his home in Berrien Springs, Michigan.

Tami is an Account Manager with Lundbeck, and is honored to have the opportunity to work so closely with the HDSA Illinois Chapter, and is looking forward to help continue creating the awareness that Huntington’s Disease so greatly needs on all levels.

 

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 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

 

 

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 Michael Brundage works in commercial real estate where he represents owners in the merger and acquisition market Long-Term Care and Senior Housing properties across the country. 

 Although Michael has not been directly impacted from HD, he has a strong desire to assist in the mission of the of the Foundation.

 Michael and his wife live in Chicago and are expecting their first child.

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Marie Jaramillo

My name is Marie Jaramillo and I was diagnosed with Huntington’s Disease (HD) in 1994.  I have two children who are at risk of having HD.  For the past 15 years I have been very involved with HDSA as well as the research community looking into treatments as well as hopefully a cure.

 My first introduction to HD was in caring for my grandmother during her struggle with HD when I was eight years old.  After that, I also took care of my mother until her death, four years ago.

 Even though this disease continues to create many obstacles I am proud of the fact that I have recently graduated from Citi College of Allied Health and East West University with a diploma as an MRI Technologist and a Certificate in Life Sciences, respectively.

 Two months ago, I was humbled when I was asked to join the HDSA board of directors.  I am looking forward to being of service to our HD community while being able to have a larger platform from which to educate all people regarding this disease, one that has been in the shadows for too long.

 

BOARD ADVISOR

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Barry Kahn

Barry Kahn

(847) 438-2403

barrykahn1@comcast.net

Barry Kahn is 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 Zurich support group in their home.  Barry and Marilyn enjoy spending their free time with their family, which includes 6 sons and 9 grandchildren.

 

COMMITTEE MEMBER

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Newsletter

Maryann Moynihan

(708) 862-1364

shamrock1959@att.net


Maryann Moynihan: Hopes & Dreams Newsletter award winning Editor, former Board Member, active on the Board since 1992, Manager of Administrative Support for Blackwell Consulting Services, Chicago, Illinois.  Maryann is also active with the South Suburban HD support group. Maryann lives in Calumet City, Illinois and is at-risk for HD.  

 

REGIONAL SPECIAL EVENTS COORDINATOR