We have a NEW mailing address
Illinois Chapter-HDSA

P.O. Box 1883
Arlington Heights, Illinois 60006-1883
(630) 443-9876


Charlotte Rybarczyk

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.

charlotte82963@gmail.com

 

John Cuccinotto 

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.

john@wisemanrealestate.net

 

Mary Bos

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.

mary_bos@att.net

 

Peggy Monson

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.  pabmonson@sbcglobal.net

 

Joe Wiedemann

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. 

joseph.wiedemann@gmail.com

 

Daniel Born

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.

dankborn@gmail.com

 

Marilyn Kahn

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.

marilynkahn@comcast.net

 

Barry Kahn

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.

barrykahn1@comcast.net

 

Gus Marchetti

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.

ajmar45@gmail.com

 

Tom Barr

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.

thomasabarr@aol.com

 

Susie Hodgson

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.

 sue_angels@softhome.net

 

Dave Hodgson

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.

 spiketdog@softhome.net

 

George Stecyk

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.

G.Stecyk@att.net

 

Danielle Karlson-Perrott

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.

hotrods4HD@gmail.com

Jennifer Placek

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.  

jenniferplacek09@gmail.com 

 

Erin Bentz

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.
erin.m.bentz@gmail.com

 

Maryann Moynihan

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

 Shamrock1959@att.net




Becky Klein

Rebecca (Becky) Klein is the social worker for the HDSA Illinois Chapter as well as the HD Center of Excellence at Rush. Committed to improving quality of life for individuals and their families, Becky has experience providing case management and crisis intervention in a variety of settings, including emergency and inpatient medicine, outpatient family services, psychiatry, nursing homes, and addiction treatment.  Becky is passionate about working with individuals and families impacted by HD, and helping them with various needs.  She feels it is a privilege to be a part of such a comprehensive and dedicated organization as the HDSA. Born in Pittsburgh, PA, Becky received her BA in psychology from the University of Michigan, and her MSW from Columbia University in New York.  She enjoys cooking, traveling, and sports (particularly college and NFL football).  She resides with her fiancé in Chicago.

Rklein@hdsa.org

Deb Boyd

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.

dboyd@hdsa.org

 

 

 

 

 

 

 
 
 
 
 

We have a NEW mailing address!
     Illinois Chapter-HDSA

     P.O. Box 1883
     Arlington Heights, Illinois 60006-1883



What Your Dollar Buys
The Huntington’s Disease Society of America is the largest voluntary health organization dedicated to improving the lives of people with Huntington’s disease (HD) and their families. With your help, we are able to support research to develop new therapies, provide services and resources to our HD families trying to cope with the effects of the disease, and grow our advocacy and educational programs to remove barriers to care. Working together we are making a difference in the lives of people with HD and finding the answers to this devastating disease. All of our work is made possible by public donations. Here’s an example of how powerful your contribution can be:
$1 Sends a Fast Facts Information Packet to a newly diagnosed HD patient.
$5 Provides a Law Enforcement Tool Kit to educate Law Enforcement Officials or First Responders about how to recognize HD and how to resolve potentially dangerous situations.
$50 Funds one monthly volunteer-led HD Caregiver support group.
$100 Supports a Social Worker-led HD Patient support group for one month.
$250 Allows an HD family of four to attend a local Education Conference.
$500 Pays a licensed Social Worker to cover a local HD Phone Helpline for one month.
$1,000 Funds an HD Advocate’s trip to Washington, DC to meet with Senators and Representatives to voice support for the HD Parity Act as part of Advocacy Day.
$2,500 Pays for an HD patient and caregiver to attend the Annual HDSA National Convention: a three-day conference bringing together people with HD and their family members with physicians, researchers, social workers and other healthcare professionals to hear about the latest research breakthroughs, new clinical trials, best care practices, advocacy efforts, and educational programs while simultaneously renewing friendships and receiving comfort and support from being among others who truly understand the daily challenges of HD.
$5,000 Funds a Don King Summer Research Fellowship for a young investigator researching basic HD biology in conjunction with an established HD researcher.
$10,000 Sponsors the National Youth Alliance (NYA) Day at the HDSA National Convention. The NYA is made up of youth and young adults from across the country whose mission is to make their generation the last to ever have to live with Huntington’s disease. NYA Day is a day filled with support, education, and fun activities for the youths who are coping with HD and Juvenile HD.
$25,000 Brings people together across the country as a Team Hope National Partner. Over 100 walks happen each year in cities nationwide, bringing thousands of HD families together and building awareness of HD in local communities.
$50,000 Underwrites an HDSA Center of Excellence for one year. HDSA’s 21 Centers of Excellence around the nation are unique expert multi-disciplinary clinical care centers for HD patients and their families, providing a full range of health care services including: ongoing clinical care; innovative laboratory research; clinical trials; professional social worker services; genetic counseling and testing; speech, occupational and physical therapies; support groups; and professional and family education.
$75,000 Supports Research by funding an HD Human Biology Project researcher for one year. This program, in conjunction with the HDSA Centers of Excellence, invests in new scientists to fund groundbreaking research by challenging basic researchers to work with clinical care centers to better understand HD biology as it occurs in humans as well as support quality of life research.
For more information or to make a donation, please visit our website at www.hdsa.org.

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