The HDSA and Team Hope

The Huntington's Disease Society of America (HDSA) is the largest non-profit organization dedicated to improving the lives of all who are affected by Huntington's Disease. Not just the gene-positive person, but the gene-negative family members and friends, too. There mission is to provide "help for today and hope for tomorrow" by promoting and supporting research and medical research to end HD and to assist those affected by HD to cope with the problems the disease brings. They also strive to educate health organizations and professionals and the general public about the disease. The HDSA is dedicated to provide the family services, education, advocacy and research that will help those affected today and also hope for a cure tomorrow for those family.

The HDSA is a 501(c)(3) organization that was originally founded by folk singer Woody Guthrie's wife - Marjorie Guthrie. Marjorie began seeking other families that had been affected by this dreadful disease soon after she lost her husband to HD. This lead to the Committee to Combat Huntington's Disease created in 1967 by a handful of volunteers. Later becoming the HDSA, the organization continues the mission she started with 54 community based volunteer chapters and a national office that provides leadership, support and guidance to the families of Huntington's Disease.

This support and guidance is provided in many different ways. There are support groups located throughout the country, publications for family, doctors and friends to help better understand the disease, assistance for the care giver, and the most current news about research and clinical trials that are going on. You can learn more by visiting their website.

Each year, in various places around the country, the HDSA also has a fundraising walk called the Team Hope Walk. The goal is to raise money for more research and study to learn even more about this disease and also provide assistance to the families living with HD. This will be the second year that Robert and I have participated. This year, it will take place on October 20, 2013. This is 6 days after the second anniversary of Cheryl's death. We will be walking in honor of her and hope you will consider sponsoring us. The HDSA is an important part of our lives and the lives of the many across the world who must live with this disease. Your donation will help the goal to eradicate this disease so that no other family will have to suffer the effects of HD. 

Please visit Cheryl's Kids and donate today. We appreciate your support.

The Power of Prayers and Faith

I have made no secret about it. I am a firm believer in God and all the Bible has to say. I know that He can and will perform miracles in the lives of those who love Him and believe in Him. I may not have experienced a miracle myself but have seen it happen to those around me. Or so I thought.

However I have begun to wonder if maybe I have been seeing a small miracle taking place in the life of my husband but haven't attributed it to that. It started when one of our fellow church members approached Robert and said he felt led to pray for healing for Robert and that God wanted to do a miracle in Robert's life. As he said "God spoke to me this morning to pray for Robert. I have a heavy heart for you guys. God is more than able and will heal."

And this got me thinking... In Robert's mother, his sister and his brother, they were already showing a lot more symptoms at Robert's age than Robert is showing. History has shown that when it is passed on by the mother, the time of symptom onset is usually the same as it was for the mother. So, in all honesty, based on these patterns, Robert should be showing more symptoms that what he does. Now, it is possible that some of it could be the stress of various situations that each of them were going through or any other number of things. But, I believe that it is part God. God has given Robert one of the biggest hearts for service of anybody I have ever met. And if God has a plan for Robert to serve for a long time to come then Robert must be in good health. So, I like to think that God is keeping Robert healthy so that he can continue to fulfill the plan God has.

To add to this is some additional recent events that have taken place. Sometime last year, Robert went to a neurologist specializing in HD for the first time. This doctor performed some various simple tests designed to test his motor skills, memory and cognitive skills. To be honest, Robert did not do well at all.  He struggled with all of them. Especially the memory ones. It left us feeling a bit down and disappointed thinking that Robert was further along in the disease track than we had thought. It was a bit disheartening. But, we haven't been back to this doctor. He is located at Southwestern Medical Center in Dallas which is a bit of a drive with crazy traffic and major inconveniences to get to. The fact that it takes an hour with little traffic to get to the office does not make it an easy journey for us.

But, as many in the HD world know, to find a doctor that specializes in HD is hard. Not many of them have enough knowledge to work with it properly and provide the right combinations of medicines and therapy that  work for HD. And since no HD patient is the same, a doctor that understands all of this is paramount.  And distance to the doctor is important. Especially as the disease progresses. For a person with advanced stages of HD to sit in a car for an hour to go to the doctor is very unpleasant. Both for the HD patient and the caregiver. We began talking to people in our support group about other doctors in the area that treated patients with HD. And there is one that comes highly recommended by many in the group within 10 miles of our house! A doctor this close to the house is an answer to prayers in itself.

So, a couple of weeks ago, Robert made his first visit to this new doctor. She performed a lot of the same tests that the other doctor did. Only this time Robert did much better. The biggest one that meant so much to us was the memory test. He was given five words at the start of their conversation to remember. Then about 10 minutes later, he had to tell her what those words were. And he remembered all of them. With the first doctor, he couldn't remember 3 of them. So that is a huge improvement. In addition, the other tests had much better outcomes.  Visiting this doctor was a totally different experience than the previous one.

I am not saying he no longer carries the HD gene. A test has not been performed to verify that. All I am saying is that based on the information we know about HD, the history of the disease in his family and the results of two doctors visits, something is different in Robert as compared to the rest of his family. And I chose to believe in the power of wonderful praying friends and God's hand in our lives.

We don't know what the future with HD holds, but we know who is in charge of it and have the utmost faith that it will all work out in a plan that will bring glory to God as a result.

Is a Drug to Treat HD Close?

A few days ago, the Huntington's Disease Society of America posted a link that one of the drugs that is in the testing phases has passed Phase II of the Three Phase process to obtain approval from the FDA for a potential new treatment for HD.

PBT2 as it is called has shown positive improvements in the cognitive ability and has reduced brain deteriation in some of the animal models that were used. So, the purpose of Phase II is to conduct studies on actual people during period of at least one year. This particular study has been going on since 2011. This has been done on 109 people with early and mid-stage symptoms of HD. According to Prana Biotechnology Limited (PBT) who conducted the study, the results were very promising and they plan to move on to Phase III to obtain approval from the FDA and make the drug avaialble to HD patients. 

Another exciting factor about this potential new drug is that it has also shown improvements on study animals infected with Alzheimer's Disease as well.  If the results continue to be as promising as they have thus far, there may be treatment for not one, but two diseases that affect the brain. I like the sound of that.

I was so excited when I first read this. Surely that must mean we can have this drug available to the public very soon, right? Well, as I learned today, that all depends on your defintion of soon. Phase III, which looks fro 1000 - 3000 people to test normally takes THREE years! Yes, three.  And then, when the application is filed with the FDA, they may take two years or longer to approve the applicaitons.

But, still even five years doesn't sound so bad. After all, as early as 2010 when Robert's mother passed away, there wasn't even a Phase II being conducted. News like this gives me hope for Robert, Debbie, Chrissy and many of the people we have met in our Support Group.

PBT2 will not cure HD or Alzhiemer's, but it could stop the effects that the two diseases have on the brain.  While that is wonderful news, research is still needed and being done to find a way to stop them both before they even begin.

Parana Biotechnology Limited plans to release the official results of the Phase II studies in October. I eargerly look forward to that to seeing the full details of those results and seeing what the potential for this promising drug really are. I am sure I will have another blog posting then to share it with you.

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.

A New Bill for a New Congress

There is a new Congress in charge, which means there is a new bill. Now, we have H.R. 1015 or the Huntington's Disease Parity Act of 2013. This purpose of this bill as stated in the opening is:
To require the Commissioner of Social Security to revise the medical and evaluation criteria for determining disability in a person diagnosed with Huntington’s Disease and to waive the 24-month waiting period for Medicare eligibility for individuals disabled by Huntington’s Disease.

Today, if a person gets approved for Social Security with HD as the basis of the approval, they still have to wait two years before Medicare coverage kicks in. This often means two years before a person can begin to receive many of the medications that will help him to lead a better and longer quality of life. There are so many stories of people that have died while waiting to obtain the much needed Medicare coverage.

Now, we got lucky with Bill when it came to Medicare. Only because it took nearly two years for him to get approval for Social Security. Since it had been nearly two years since he began the whole process, he did not have to wait an additional two years before Medicare kicked in. He only had to wait for a few months.

However, that was still two years that he had to wait to begin much needed treatment for this deadly disease. Two years that could have been made a little bit better form him if he had medications to help minimize the symptoms or in some cases, at least slow the onset of some of those symptoms.

This is why this bill is so important. This is why it matters that Congress acts on this bill during this term. This bill has been presented before Congress in 2009, 2011 and now 2013. Each time, it has never gotten past the committee to be brought to the floor for a vote. The 2011 bill had 146 sponsors! But that isn't enough. It needs more! We need more sponsors to show support for this bill.

I have always said that I wouldn't get into politics on my blog. That isn't what I wanted it to be about. I still feel that way. However, this is the one time where I am willing to make an exception. I want people to help me and tell their Congress people that they need to pass this bill. It is important for my family and the family of so many others.

Please consider contacting State Representatives or Senators and ask them to support this bill and pass it.  Not just for my family but for the roughly 200,000 people out there that are affected by this disease in one way or another.