Who We Are
Welcome to the Huntington's Disease Society of America's (HDSA) Northeast Ohio Chapter. We are a part of the former HDSA's Upper Great Lakes Region, currently known as the MidWest Region.
The Late Eva G. Weissman - We will always treasure you!
Our Mission
To improve the lives of everyone impacted by Huntington's disease by providing support, driving advocacy, and accelerating research.
Our Vision
A world where Huntington’s disease is treatable and care is accessible for all.
What is HD?
Huntington’s disease (HD) is an inherited neurological disease that causes progressive breakdown of movement, thinking, and behavior. Symptoms worsen over time and can affect a person’s ability to work, communicate, and care for themselves. Today, approximately 41,000 Americans are living with symptoms, and more than 200,000 are at risk of developing the disease. Each child of a parent with HD has a 50 percent chance of inheriting the gene. There is currently no cure, but research is accelerating the development of better treatments and improved care.
About HDSA
The Huntington’s Disease Society of America (HDSA) is the leading national nonprofit dedicated to improving the lives of everyone impacted by Huntington’s disease. Through community events, education, advocacy, specialized care, and research advancement, HDSA connects individuals and families to trusted resources and works to ensure no one faces Huntington’s disease alone.
Across the United States, HDSA currently supports:
• 50+ volunteer-led chapters and affiliates
• Huntington’s disease research
• HDSA Centers of Excellence
• Social workers
• Support groups
• Education programs
• Youth and young adult programs
• Advocacy efforts
• Extensive community education and awareness through Team Hope walks and more than 300 special events annually
HDSA Centers of Excellence
The HDSA Centers of Excellence provide an elite multidisciplinary approach to Huntington's disease care and research. HDSA currently has 54 Centers of Excellence across the United States.
At these world-class facilities, patients benefit from expert neurologists, psychiatrists, therapists, counselors and other professionals who have deep experience working with families affected by HD and who work collaboratively to help families plan the best HD care program throughout the course of the disease.
For the exact address of each HDSA Center of Excellence, click here for our Locate Resources page
HDSA Center of Excellence at Cleveland Clinic
Cleveland Clinic U Building
9500 Euclid Avenue S3
Cleveland, OH 44195
Adam Margolius, MD
Phone: (216) 444-2087
Social Worker: Marisa Campbell, LISW
Email: campbem11@ccf.org
Phone: 216-445-1108
HDSA Center of Excellence at Ohio State University
Martha Morehouse Pavilion
Neurology Suite, 3rd floor
2050 Kenny Road
Columbus, OH 43221
Sandra K. Kostyk, MD, PhD
Social Worker: Mary Singletary
Email: singlem2@ccf.org
Phone: 216-444-1937
Contact
Mailing AddressHDSA Northeast Ohio Chapter
PO Box 31043
Independence, OH 44131-4854.
HDSA Upper Great Lakes Regional Development Officers
Peggy Cribbin
PO BOX 2286
St. Louis, MO 63109
p. (314) 293-4359
pcribbin@hdsa.org
Camille Colletti
P.O. BOX 477
Mukwonago, WI 53149
P. (847) 849-0680
ccolletti@hdsa.org
Chapter Social Worker
Katie Dykman, LISW
Phone: (440) 742-1284
Email: kdykman@hdsa.org