Care and Support

Care and support for our HD affected families throughout Illinois is paramount to the Illinois Chapter’s mission.  Care and support come in many different ways.  The chapter hosts several support groups as well as offering in-service training sessions for nursing home personnel, for hospice workers, as well as the medical professionals.  Please click Support Groups  on the navigation bar to the left to find a support group near you.  In order to schedule an in-service for your loved one’s nursing home, please contact Cori Robin by phone at (630) 443-9876 or by email at crobin@hdsa.org.

You may also ask your nursing home director to contact Cori in the same manner.  The Illinois chapter also works hand in hand with Cori, social worker, at the Chicago HDSA Center of Excellence at Rush Medical Center.  Your loved one’s care is our #1 priority!
For a list of state specific resources in Illinois,   Click here for the latest update (March, 2014) for Cori Robin's Illinois Resources Guide

 

Are you willing to be a Caregiver's mentor?  If so, click on this link.

Caregiver Mentor

 

New Drug Study
 
Froedtert Hospital and the Medical College of Wisconsin in Milwaukee are participating in a research study with the HSG called FIRST HD.  This is a new drug trial that is looking to see how well a new drug, SD-809 ER, lessens chorea in HD patients. 

SD-809 ER has the same action as tetrabenazine; however all formulations of SD-809 are broken down in the body more slowly than tetrabenazine. The SD-809 ER form also releases the drug more slowly into the body. These differences in break down and release may mean that the drug:

1) may be taken fewer times a day and

2) may improve how well the body reacts to the drug.

I have reached out to some of the other local HDSA contacts and I know that the HSG has sent out communication nationwide to HDSA chapters about this study.  We are hoping that you can help us out by giving information out at any HD support groups or events that you attend.  We need all the help that we can get with subject recruitment to help learn more about HD and helping to control chorea.

 Additionally, there is a link below that has additional information about the study and a slide deck attached.    

http://clinicaltrials.gov/ct2/show/NCT01795859?term=809&rank=6

Please call me with any questions!  I look forward to hearing from you and possibly working together on this effort.  Thanks!

Lynn Wheeler, MS

Clinical Research Assistant III

Department of Neurology

Medical College of Wisconsin

9200 W. Wisconsin Ave

Milwaukee, WI 53226

Office: 414-805-9307

Fax: 414-259-0469

 

 





Information About the Affordable Care Act

**NEW**

Are you confused about the Affordable Care Act (also known as Obamacare)?  Click on this link:  http://www2.illinois.gov/gov/healthcarereform/Pages/HealthInsuranceMarketplace.aspx

Also click on this link for checklists, brochures, etc., for health insurance options via marketplace:  http://marketplace.cms.gov/getofficialresources/publications-and-articles/publications-and-articles.html

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