Since April 2000 the mission of the HDLighthouse Families Web site is to present and explain the latest research findings so that families afflicted by Huntington's disease can become proactive in their care, have hope for the future, and make good decisions in the present. Additionally we provide information that is vital to the the support of HD families. Where possible we will direct you to specialists in the your area of concern, but if we are able to provide better or more current information then you'll find it here.

HDSA Convention Session: Potential New Therapies

This session was moderated by Dr. Steven Finkbeiner. The first speakers were Dr. Joachim Tedroff, chief medical officer, and Asa Rembrandt, project manager for ACR-16. The dopamine stabilizer ACR-16 now has a generic name pridopidine and a trade name of Huntexil. There are ten studies ongoing or planned for this drug.

Reduced Creatine Kinase

Robert Ferrante, Steven Hersch, and colleagues have identified a potential biomarker for Huntington's Disease progression that can be measured in blood samples.   An isoenzyme of creatine kinase, CK-BB, was shown to be reduced in the blood and brains of two mouse models over time.   What is exciting is that CK-BB was also found to be reduced in the blood of pre-manifest gene carriers, and reduced even more in symptomatic patients.  

Early Pre-Huntington's Symptoms?

The question of when “onset” occurs has always been a hard one to answer. People in HD families have known for many years that their loved ones' deterioration with HD occurred years before the doctors would or could diagnose it. Our HD does not become real to the medical world until the day we are diagnosed as symptomatic. In the meanwhile we can feel like we are going crazy because we know something is seriously wrong inside of us deep inside but it can be invisible to others. I


Huntington’s Disease is a whole family affair. There is not a single member of any HD family out there who is not affected in some way by their HD family member(s). There are many sad stories, but there are just as many people out there who are fighting their own HD dragon with a bravery that makes their family and friends proud. %TR% My oldest sister is one of those HD heroes I speak of. Each time I see her she has declined further into her own HD journey. She is a window into my futu

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