2014 HDSA National Convention

Date: 
Thursday, June 19, 2014 - 1:00pm - Sunday, June 22, 2014 - 4:00pm


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Location:

Galt House Hotel

140 N 4th St.

Louisville, KY 40202

Galt House Hotel

(Waterfront view of the Galt House. Photo courtesy of the Galt House)


Booth:

Stop by and visit our booth in the exhibit hall. We'll be handing out free PREDICT-HD goodies and informational materials, as well as answering any questions about the study. Also, if you are interested in registering for the HDQLIFE study, you can stop by our PREDICT-HD booth to register or for additional information.

 

Donald King Research Fellowship Poster Session:

Saturday, June 21

10:15-10:45 a.m.

Jolene Luther

 

Jolene Luther (pictured) was selected as one of two HDSA Donald A. King Summer Research Fellows last summer. Jolene will be presenting about her experience, which involved looking for increased levels of iron in MRI scans of PREDICT-HD study participants. 


 

 

Clinical Research Initiative Day HDQLIFE Study:

Sunday, June 22

Research studies being at 8:00 a.m.

Courtney ShadrickAs part of the convention's Clinical Research Initiative Day on Sunday, June 22, our research coordinator Courtney Shadrick (pictured) will be at the Nunn Room in the Galt House Hotel conducting two-hour visits ($40 compensation) for the HDQLIFE observational study immediately following the HDSA Annual Convention. Additionally, we will be available to conduct HDQLIFE visits throughout the convention (June19-21) if you are unavailable on Sunday.

 

About the study: HDQLIFE, a sub-study of PREDICT-HD, uses a variety of tests and questionnaires to measure participants' quality of life related to their social, mental, physical and cognitive health. Researchers aim to use these results to develop a new quality of life measure for those affected by Huntington disease. 

 

Criteria for eligibility: Individuals who have tested positive for the Huntington disease gene expansion, as well as those who have been clinically diagnosed with HD are eligible to participate. You do not need to currently be enrolled in PREDICT-HD to participate. 

 

How to participate:

1. Visit our PREDICT-HD booth in the exhibit hall anytime Thursday through Saturday (June 19-21) or see us at the Nunn Room on Sunday for more information or to schedule a private and confidential appointment.

OR

2. Contact Courtney Shadrick to pre-register: 319-353-5443, courtney-shadrick@uiowa.edu


Workshops/speakers affiliated with PREDICT-HD:

PREDICT-HD coordinators, investigators, and collaborators will be leading several workshops throughout the convention. Here are some presenters affiliated with the study:

 

Friday, June 20

Christopher Ross

 

 

10:30-11:45 p.m.

Behavior Issues: Unawareness and Apathy

Christopher A. Ross

 

 

Amanda Miller

 

 

10:30-11:45 p.m.

Youth Ages 7-12: Talking with Friends about HD

Amanda Miller

 

 

 

Amy Chesire

 

 

 

2:15-3:30 p.m. 

Teens Ages 13-19: Dating and Relationships

Amy Chesire

 

 

4:00-5:15 p.m. 

Behavior Issues: Irritability and Depression

Christopher Ross

 

Saturday, June 21


3:00-4:00 p.m.

Youth Ages 7-12: Talking to Your Parents About HD

Amanda Miller

 

3:00-4:00 p.m.

Teens Ages 13-19: Support Group 

Lisa Kjer

 

4:15-5:15 p.m.

Young Adults: Managing Relationships

Amy Chesire