There is hope on the horizon

I love technology.  It totally rocks! I have been able to spend the last two days watching parts of the Huntington's Disease Society of America (HDSA) National Convention that is taking place in Jacksonville, FL. It is great to be able to hear and see some of the presentations and workshops that have been going on from the comfort of my own home. Hopefully, next year we can make it to the conference. But that is a blog for another day. Today's is about how much hope I have gotten from one of the presentations that I got to hear titled "The Drugs are Coming"

The comment that one of the presenters made really resonated with me. He said that HD research is actually better of than the research of things such as Alzheimer's or Parkinson's because we know exactly what causes the disease. We know that HD is caused by a a mutation for a gene. The same cannot be said for the other two. Researchers and scientists have not yet figured out exactly what it is that causes the other two. And knowing what causes HD puts us one step closer to stopping it.

That is great news! But what is even better news that there are many drug companies out there that are now finally supporting the research. Drug companies are investing in the research that is being done. Granted as one of the presenters commented, for the drug company it is part from a monetary perspective. But who cares! If the drug company is willing to fund the research and testing that is required to find a way to stop HD from spreading through generations, prolonging the life of my husband or completely eradicating it from the world, I wholeheartedly support the drug companies and all of the research that is being done.

Today, all we have are medications that help treat some of the symptoms. There are anti-depressants to help treat the depression many with HD feel. There are medications that help minimize the chorea or uncontrollable movements that an HD person often struggles with. There are even medications that can help to deal with some of the early on cognitive breakdown that someone experiences. But they only treat or suppress that symptoms of the disease. They do nothing to truly improve or prolong the quality of life that an HD person has. And that is what I want.

I want something that will keep Robert with me for many years to come. I want something that will keep Debbie around to see her boys marry and have children of their own. And since we have no idea yet if her three boys have it, I want something that will help to stop one of them from spreading it to their own children. And it seems that these things are on the horizon. There are so many things that are being done today that make that tomorrow seem so much closer than it did yesterday. And having the drug companies on board has made that tomorrow even more of a reality. 

I cannot say exactly what each of the medications that are out there and what each one will do. They used a lot of words and stuff that I didn't quite understand. Some are still in the infancy stages, some are still being tested on mice, some are being tested on primates and some are just a few steps away from getting FDA approval for use on humans. And some of them will suppress the gene that causes HD to affect the body, some are aimed at stopping the gene from every even starting the repeats that cause problems and some even attempt to repair the gene that has causes all the issues to being with.

So, in the words of the presenters "THE DRUGS ARE COMING!" And that is something that we were not able to say even two years ago. There is hope on the horizon.