Who We Are
Welcome to the Huntington's Disease Society of America's Iowa Chapter. We are a part of the former Upper Great Lakes Region, now known as the MidWest Region.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.
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
Amy Lemke, MSW, LISW, Clinic Coordinator: amy-lemke@uiowa.edu
Website: www.medicine.uiowa.edu/psychiatry/huntingtonsdisease/
1-309 MEB
Iowa City, IA 52242
Phone: 319-353-4307
Toll-free: 800-777-8442 (ext. 34307)
Fax: 319-353-4438
Email: hdcenter@uiowa.edu
Contact Us
HDSA - Iowa ChapterPO Box 71181
Clive, IA 50325-3704
e-mail: iowa@hdsavolunteer.org
Social Worker:
Ashley Cochran
Contact info:
Email: acochran@hdsa.org
Phone: 515-398-0760
Ask me about:
Navigating Resources
Future planning (applying for disability benefits, financial or healthcare resources, mental health services, advanced care directives, long-term care)
Meeting basic needs (housing, utilities, food)
Referrals to providers/ services
Support meetings & support groups
Research
Advocacy
Education & information
And more!
HDSA 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