Living Today-Planning Tomorrow



2015 HDSA Illinois State Conference March 21, 2015 ~ 8:00am - 3:30pm

To register, click here


It is very important that you pre-register

so that we can plan the food needs.


Cost for this event is $10.00

Click here to see the Conference Brochure


Join us for an exciting day!

Keynote presentation:

“Living Today, Planning Tomorrow”—Shana Verstegen, HDSA-Wisconsin Chapter President                                      (2007-2013), and Four-Time Log Rolling World Champion


Dr. Kathleen Shannon, MD, is director of the HDSA Center of Excellence at Rush University Medical Center in Chicago. She will present her annual Research Update & Report on Clinical Trials


Join us for an exciting day with keynote speaker Shana Verstegen, HD medical expert Dr. Kathleen M. Shannon, and other outstanding professionals who wrestle daily with the struggles of HD families. What does living with HD teach us about the balancing act we must perform? How do we lead a meaningful life in the present while planning intelligently for the future?Come spend a special day with us and find out. 


Sponsored by the Illinois Chapter of the Huntington’s Disease Society of America.


8 am           Registration, Coffee, Networking

8:45 am     Welcome and Introductions—Daniel Born, PhD, HDSA Illinois Chapter President

9:00 am     “Living Today, Planning Tomorrow”—Shana Verstegen, former HDSA Wisconsin Chapter President                            (2007-2013), and Four-Time World Log Rolling Champion

10:00 am   Break

 10:15 am   Morning Breakout Sessions

 Sadie Foster, MA, LCPC: “What Is Caregiver Support and How Can I Get It?” (Laurel)

Matt Margolis, JD: “Critical Choices in Estate Planning” (Locust)

Margaret Chizek, RN, MBA: “Difficult Transitions and Conversations” (Linden 1)

Susan Hodgson, LPN: “Food, Pleasure, and Nutrition” (Linden 2)

Sara Cherny, MS, CGC: “What Is Your Strategy for Family Planning and Genetic Testing? Know Your Options” (Birch)

11:00 am    Break

11:10 am    Research Update & Report on Clinical Trials– Dr. Kathleen M. Shannon, Director of the RUMC                                  Huntington’s Disease Society of America Center of Excellence

11:50 am    Update on Clinical Trials and Research Volunteers for HD—Ted Ross

 Noon – Lunch 

Introducing the HDSA Illinois Chapter Board

 1 pm           Special Focused Support Groups:

  • HD Symptomatic – with Stacey Barton, MSW, LCSW (Locust)
  • Caregivers – with Sadie Foster, MA, LCPC (Birch)
  • At-Risk – with Cori Robin, MSW, LCSW (Linden 1)
  • Gene Positive – with Becky Klein, MSW, LSW (Linden 2)        

2:15 pm     Break

 2:30 pm  Afternoon Breakout Sessions 

 Tim Dunneback, CFP, ChFC: “Financial Planning: Short- and Long-Term” (Locust)

Cori Robin, MSW, LCSW, and Becky Klein, MSW, LSW: “How (and When) to Talk with the Kids About HD”             (Linden 2)

Rebecca Khayum, MS, and Nina Robins, PhD: “In-Home Speech Therapy and Occupational Therapy” (Linden 1)

Amy Merkel, LPN: “Pros and Cons of Taking the HD-Predictive Test” (Birch)

Stacey Barton, MSW, LCSW: “HD 101: Facts and Misconceptions” (Laurel)

3:15 pm Adjourn, Main Hall, Daniel Born, PhD



Allgauer’s Hilton Hotel

Chicago Northbrook

2855 Milwaukee Avenue, Northbrook, Illinois  60062 

Directions to the Hilton-Northbrook Chicago

From Downtown Chicago:
90/94 West to O'Hare/Rockford, I-294 North/Milwaukee, WI; Exit at Willow Road. West on Willow Road to Milwaukee, South on Milwaukee 1/2 mile. Hilton Hotel is on left

.From the West:
90 East to I-294 North, exit at Willow Road. West on Willow Road to Milwaukee Avenue, South on Milwaukee, 1/2 mile, Hotel is on left.

From the North:
94 East to I-294 South, exit at Willow Road, West on Willow Road to Milwaukee Avenue, South on Milwaukee, 1/2 mile, Hotel is on left

.From the South:
I-294 North, exit at Willow Road, West on Willow Road to Milwaukee Avenue, South on Milwaukee 1/2 mile. Hotel is on left

The hotel is located at the intersection of Milwaukee Avenue (Route 21) and Winkelman Road. It is south of Willow Road, north of Lake Avenue, and just west of the Tri-State Tollway. (I-294). If you have questions, please contact conference chair Daniel Born at (773) 896-4327, or email:

Sponsored in part by