Hope happens even in Huntington's. Hope happened in leukemia, hope happened in AIDS, and hope is happening even in Huntington's. It happens and grows with each scientific advance. It can’t be stopped. The first glimmer came with gene discovery: The door to the room holding the secrets of the disease had been cracked open. Then there was hope that sometime in the future more knowledge about HD could bring treatment. We knew that treatment or cure wasn't just around the corner. Hope was born.

Then came mouse (and other) model systems in which to study the disease. The door opened further, bringing light to many of the secrets of disease mechanism. Then the glimmer of hope became a flame. We still knew that no treatment or cure was around the corner. But hope grew.

Then came drug studies that showed (partial) benefit in these model systems. With further good fortune, many of these drugs are safe and already available. With still further good fortune, combinations increased the benefit. With these advances, hope becomes possible reality.

False Hope/True Hope

There are those who criticize HDDW by suggesting that we offer false (or delusional) hope for treatment in our therapeutic trials. We disagree.

In reality, no one can separate the human clinical trial from hope in any disease, even Huntington's. Having just finished the IRB process, I know that every time a researcher or pharmaceutical company sponsors a clinical trial there must be chance of benefit. It would be unethical to propose a human trial that had no chance of benefit. So what the researcher defines as chance of benefit is what the patient calls hope.

That is what we offer: A chance of benefit, or to call it what it is: Hope. We have never and don't now suggest more than a chance. There is no promise or guarantee of benefit.

Do those who are critical of these trials believe that is no hope, or do they believe we shouldn't talk about the possibility? Do they believe that HD people need to be protected from hope or that disappointed hope going to make our disease worse? Do they believe HD people are not strong enough and smart enough to know the truth about this disease?

There is a chance of benefit in these trials: Whether these trials work for not; hope happens; even in Huntington's.