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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
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.
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| Susie Hodgson |
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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 |
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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 |
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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 |
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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.
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| Tom Barr |
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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 |
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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 |
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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 |
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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 |
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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 |
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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 |
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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. |
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| Barry Kahn |
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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.
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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.
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REGIONAL SPECIAL EVENTS COORDINATOR
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