Takes place Sunday, December 5th at The Ivy Room

Chicago, Illinois (November 2, 2021) – The Upper Great Lakes Region of the Huntington’s Disease Society of America (HDSA) is happy to announce the return of the Chicago Celebration of Hope on Sunday, December 5th at 1:00 PM (CT) at The Ivy Room. All proceeds support HDSA’s mission to improve the lives of people affected by Huntington’s disease (HD) and their families. 

This year, we are delighted to be honoring HDSA’s Illinois Chapter board member Charlotte Rybarczyk who has made a difference in the HD Community for more than twenty years. She has been a tireless advocate and determined individual that has given so much of her time and love to the society and especially HD families. She has served on the National Field Committee as a mentor to other chapter leaders. Charlotte has lost her mother, five aunts and uncles, her sister, and a cousin to HD. After receiving a negative test result for HD, she remains committed to the cause especially now having two nephews still at risk. 

“We are so excited for this year’s event and believe this fabulous brunch will be a safe way to gather while supporting our HDSA Centers of Excellence that specialize in HD care,” said Heather Spyra, Chicago Celebration of Hope Committee member. 

Celebration of Hope is one of the flagship events organized by HDSA’s volunteer-led Chapters and Affiliates nationwide to recognize those who have made an impact in their community while inspiring others to join the fight against HD.  

For more information about the event, please contact Camille Colletti (ccolletti@hdsa.org, 847-849-0680). Online registration and donation can be found at uppergreatlakes.hdsa.org/chicagocoh 

The event is sponsored by Teva Pharmaceuticals, Horizon, uniQure, Northwestern University (HDSA Centers of Excellence), Billow Butler & Company, Wolves, Ivy Room, and RBC Wealth Management.


Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.hdsa.org or call (800)345-HDSA. 


Matthew Santamaria

Communications Manager 

(212) 242-1968 ext. 204