Celebrating the Life of Cheryl Everett

It was four years ago today that Cheryl Everett's body lost the fight to disease. This disease called Huntington's Disease. Four years that she has not been with us. Four years of so many life events she has missed out. Four years of growth in grandchildren and even a new grandchild and some more great grandchildren.

After four years, it has gotten easier to think about her and the many memories that we have of her. But that doesn't mean we aren't sad and that we miss her any less. That couldn't be farther from the truth. We still miss her and still get sad when we think about her. I don't think there will ever be a time that we don't miss her no matter how many years go by. 

The thing is, she wouldn't want us to be sad. She wouldn't want us to dwell on how much we all miss her. Instead, she would want us to celebrate her life and our lives, too. If she were here today, she would tell us all that we have so much to be grateful for and so many better things to do instead of worrying about her. And so, this year, I want to celebrate all that she has given us. If it weren't for her, there would no Everett kids. There would be no Bill, Debbie, Craig, Robert, or Kevin. And I have to say, I am especially partial to Robert. Plus, there are all the grandchildren and some great grandchildren that are here as a result of Cheryl. We have so much to be thankful for and so much to celebrate as a result of her life. 

So, while we do miss her and are sad she is no longer with us, we can celebrate the life that she had and the lives we all have because of her time on this earth. And we can continue to support the effort to find a cure so that her future generations will have a life free from HD. 

Cheryl, I hope you are still enjoying dancing with Elvis.

Supporting Friends with Other Dreadful Diseases

Dealing with Huntington's Disease is a lot. It brings with it its own set of issues. But those dealing with HD don't have a monopoly on pain and suffering. Many others can use our love and support.  Robert and I are firm believers in showing our love and support to our friends and family that are dealing with problems and issues of their own. 

The month of September is the month picked to raise awareness for a disease that has affected some that we know very well.  It is Childhood Cancer Awareness month. Sadly, friends of ours have been affected by childhood cancer. 

One of these children is a sweet little girl that I watched when she was just a baby in the nursery at our church named Chloe. She was first diagnosed with leukemia at the age of 1.  Yes! A year old and she had leukemia! The day I learned that, I was heartbroken. I could only begin to imagine how her parents felt. Then, she went though radiation and chemo and it worked. For a while. She was diagnosed again about a year later. So, this sweet little girl with the beautiful smile and warm hugs had to battle a leukemia diagnosis twice before the age of five. The good news is that she just got her yearly test results back and she is now three years cancer free.  Praise God!

The second one is a dear sweet young man who was just recently learned he has has a brain tumor. He was diagnosed a few months ago just days before his 13th birthday. He has completed his radiation treatment and is currently in the midst of his chemo treatments. Through it all, he has maintained his love of life and his trust in God. Even now, as he struggles with some set back and complications as a result of this, he knows that God is taking care of him. 

We pray for both of these friends daily. One for healing and one for continued cancer free results!

Robert and I support raising awareness for childhood cancer and what these kids have to deal with when they still have so much life ahead of them. And with the help of some wonderful people and a great faith based foundation, Robert did something to show his support and love for these kids.

It all started when the Brown family was dealing with Chloe's fight with leukemia a second time. What started at as friends and family helping with expenses, emotional support, pray and raising awareness of this little girl's battle with cancer grew into a foundation to minister and provide support to other families going through the same thing she has had to endure. In the mist of the Brown Family's struggles, the Orange Out Foundation was born. The Orange Out Foundation's mission is to help families battling cancer through emotional, spiritual and monetary support and to support research to find a cure for childhood cancer. 

On Sunday, August 31st, a group of volunteers gave up their time to help benefit the Orange Out Foundation by giving of their time by cutting hair and shaving heads. Yep! Shaving heads. Since the month of September is Childhood Cancer Awareness month, shaving heads is a good way to show support for all of those that have lost hair because of their cancer treatments. The only request when having your head shaved or cut is that you make a donation to the Orange Out Foundation. Robert said sign me up!

 

So, Robert decided to shave is head. And he has chosen to keep it shaved for the month of September in honor of Chloe and Emilio. He hasn't decided if he will continue to keep it shaved after that. But, even for a month, to show support and love for kids battling cancer and loosing hair all over the world is alright by me.

To learn more about the Orange Out Foundation and how you can help this amazing group continue to minister to families as they struggle through this disease, please visit their website at www.orangeout.org.

The Pie in the Face Challenge

There is a new challenge out there that was spawned of the ALS Ice Bucket challenge. Only this one is to raise awareness for HD.

 

First a little about the ALS Ice bucket challenge… the thought process behind the bucket of ice is because it gives you a temporary freezing of the nerves to simulate what a person with ALS feels like all the time. Just a brief second of that feeling can give you a bit of understanding of what a person that is living with ALS deals with.  That short little sample is enough to tell you that you don’t want it and to sympathize with someone that does have it. This is definitely a worthy cause and I applaud the effort to help raise awareness for ALS.

 

When I first heard about the ice bucket challenge, I thought we need something like that for Huntington’s Disease. Especially considering the recognition the ice bucket challenge has gotten. I just couldn’t think of the right thing to do. Since HD can impact each person differently, there is not one way to simulate the feeling of having HD. How best can you make a person feel the uncontrollable chorea that affects a person? How can you simulate the lack of coordination or cognitive ability that can be common of a person battling HD? There really isn’t a way to do that. 

It looks like I wasn’t the only one that was thinking about it, either. A couple of days ago, somebody came up with the Pie in the Face for HD challenge.  It is a fun way to help raise awareness for Huntington’s Disease and to help to wonderful organizations that support people who live with HD.  The challenge: Option #1: Take a pie made out of whip cream in the face and donate $1.00 to the Huntington’s Disease Society of America (HDSA) or WeHaveaFace.org. within 24 hours of being nominated. Option #2 Donate $100 to the Huntington’s Disease Society of America (HDSA) or WeHaveaFace.org. within 24 hours of being nominated. Then nominate up to 5 people to do the same. Post your pictures on You Tube  or the Facebook HD Pie In The Face Challenge page.

 

 

I have an extreme dislike for whip cream. I don’t like the way it tastes and am not a fan of the texture of it, either. I can tolerate in my milk shake if it is mixed up well so that I can’t really taste it, but plain? How can you do that? Well, this is one thing that will make me suck it up and deal. I am all for anything that will raise awareness for Huntington’s Disease. It is a cause that is very near and dear to my heart, after all.  And I will make a donation to the

 

I will tell you that the HDSA funds research for Huntington’s Disease and helps families struggling to survive with HD. They are non-profit organization that is tax deductible. WeHaveAFace.org has the mission simply to raise awareness of the disease by producing a documentary they are putting together to further that effort. They are not a non-profit and so your donation is not tax deductible.  You can chose to support whichever one you choose but Robert and I will be supporting the HDSA.  To donate to the HDSA, visit their webpage. To support WeHaveAFace.org, you can visit We Have a Face to learn how to donate.

 

The coolest thing about this? James Franco has already retweeted it when someone challenged him. Tim McGraw has been challenged, too. I hope it catches on as much as the Ice Bucket Challenge did so that we can raise awareness of this disease and its affects it has on a person. Plus, if it raises money for the HDSA, I am an even happier camper.

 

If you are nominated by me, Robert, or anybody else, I hope you will consider it and take the challenge and nominate your own people. Then, post your video or picture on your Facebook page and on the HD Pie in the Face Facebook page to using #Pieinetheface4HD.  Let’s all raise awareness and some money for Huntington's Disease.

 

Depression, Suicide and Huntington's Disease

There are so many drawbacks to having a disease that people don’t talk about; a disease that most people know nothing about. There is the blank stares you get when you tell somebody about it. Some people just say “ok” in the way that you know they have no clue what you are talking about. Anybody that has had any involvement with Huntington’s Disease knows these responses. We have felt it when we were first made aware of this dreadful disease and still see it when talk to people about it.

Because a disease is not talked about, a lot of the problems associated with it are not talked about either.  However, not talking about it does not make it go away; talking about it does not mean that it is going to happen, either.  Huntington’s Disease has to be talked about so that people understand the illness. It has to be discussed so that others know a lot of the problems that can be associated with the disease. These problems are more than just physical deterioration of the body. Huntington’s Disease is neurological disease. IT AFFECTS YOUR BRAIN. That affect can be mental, physical or emotional and the effects can be varied from one person to the next. The physical signs are obvious. The mental and  emotional ones, though, are often unnoticeable.  Those are the ones that we as caregivers need to look out for. One in particular that needs to be watched out of is depression. 

Depression is real and one of those taboo subjects that most people don’t talk about. As a society, we have all been taught that we should “suck it up and deal”. We are told to put on a happy face and not let the world see what is tearing us up inside. So, that is what we all do. Most of us have no real idea that the person in the cubicle next to us at work is struggling with depression. Do we really want to know? Probably not. We are all to engrossed in our own lives and our own issues to honestly care what the person next to us is dealing with. Plus, when society teaches us not to talk about the depression, it increases the non-caring factor. People with Huntington's Disease often suffer from varying stages of depression and it can have some very unfortunate results. 

Huntington’s Disease has been broken in to three stages. Stage one is before the diagnosis or right after the diagnosis. This is when a person is often dealing with the early onset of symptoms and doesn’t fully understand what is wrong. Stage two is after diagnosis when a person is begin to lose some independence. This is usually the stage where the diagnosed person can no longer work or drive because either physical or cognitive limit their ability to do so. Stage three is the advanced stage. This is where the person can no longer take care of themselves in any capacity and must rely on others. Depression most often occurs during stages 1 and 2.

In stage one, before diagnosis, depression is felt because of the unknown. You know that something is wrong but nobody can figure out what it is. It can make you wonder if maybe you are just crazy in the head. Especially when  you are not aware of the condition existing in your family. As a person who went through numerous physical ailments for several years before the official diagnosis of a rare form of hereditary arthritis, I can certainly relate to that. It is tough when you know that something is going on inside of you that is not “normal” but nobody can figure it out. It can easily lead to depression. On the flip side, if you know that you have a family history of HD and are experiencing some of the early symptoms, it is very easy to get depressed before the diagnosis. You are positive you have the disease because of the symptoms you have. The depressed feelings can increase once the positive diagnosis is confirmed. Interestingly, it is not uncommon for a person with a negative result to have increased feeling of depression, too. Especially if you do not have the disease but a sibling does.

Stage two depression comes in when a person reaches a point where they can no longer do something that have always been able to do. This usually begins with the inability to drive or continue holding down a job that you love. Being unable to do something that you have been able to do your entire life is hard. Reaching the point where you have to dependent on somebody else to take you two miles down the road to go grocery shopping is hard. It can easily lead to depression because you feel like life as you know it is no longer in your control.

Depression can often lead to suicidal thoughts. Suicide is not uncommon in either one of these stages. In fact, it is believed that at least half of people diagnosed with HD have had a suicidal thought at some point in the journey through the disease. These thoughts are often not shared with anybody. The feelings can be kept inside. The most common reasons for not sharing these feelings are the fear of frightening loved ones by sharing these thoughts, fear that nobody will take them seriously, or even the feeling that suicide is an acceptable alternative to dealing with the inevitable future. Many people that have a mental illness of any kind also don’t want to talk about it because there is a stigma that is associated with mental illness that cause someone to feel ashamed of what is wrong with them.  Instead of talking about it or seeking help for these feelings, a person choose to end their life.

As a caregiver, you need to understand that not talking about it will not make it go away. And just because you talk about it the does not mean that it is going to happen. As a caregiver, you need to understand that people want to talk about the turmoil inside them but don’t because they think nobody cares. As a caregiver, you need let the person know that it is okay to have such thoughts. Help them seek help from a therapist or psychologist to properly deal with the issues.  Above all else, let the person know that you  love them and want to have them in your life regardless of what state they are in. One suggestion that I read is to say something every day that makes you grateful to have them in your life. Another one is to talk to the person about that suicide would affect you and those around you. Let them know that it will be harder for you to live knowing they chose to take their own life instead letting the disease run its course.

If you think someone you know is considering suicide for any reason, get help. You can call theNational Suicide Hotline at 1-800-273-TALK. You can also visit HDReach.Org for more information about depression and suicide in people with Huntington’s Disease.

Doing Everything With a Different Perspective

This is one of those non-HD posts but something that I wanted to share. Not just for me but for so many people that I know.

I recently downloaded the Timehop app. For those of you not familiar with this app, it links to your Facebook, Twitter, Instagram (and so many others) and pulls your history of pictures, posts or whatever it is. I think it is pretty cool because it is a quick snapshot of some things that you might have forgotten about.

Or it can remind you of the trials in your life as is the case with some recent flashbacks that I am seeing. Over this last week, I have been taken back to a major trial in my life that took place 5 years ago. I learned a lot as I walked down the path that God had laid out for me over a three month time period. It wasn’t always fun, it was wrought with tears and frustrations and some times that my husband probably wished he didn’t have to be around for. I know that I am not always the most joyful person to be around, but I know that during all of this, it was even worse. I was not a happy camper. In fact, I was very angry at some people and struggled to understand why this whole thing was happening. Seeing these posts has brought back some of those memories. And the reminder of the lessons that God taught me through that time. And maybe some things that I didn’t fully learn and am being reminded of again.

Briefly, it was five years ago that the man that I still considered the best boss I have ever had was removed from his position unfairly and replaced by a person that had no business being in that position. Needless to say, it was very upsetting to me and it became very frustrating and hard to work for him because of his treatment of me. Plus, he had taken an immediate dislike to me and was already planning for the day that he could get rid of me before he had even settled in to his new office and position. I would sometimes leave the office in tears because I was such an awful environment that I was in.

During all of this, I would often wonder why God had put me in this spot. What had I done that I needed to experience this whole ordeal. Then, one night, He revealed it to me. He reminded me of why I was put on this planet and what I was meant to do. In the words of Steven Curtis Chapman song “Do everything that you do for the glory of the one who made you!” Yeah, that! I wasn’t put here to work for the crummy boss or ungrateful co-workers. I was put on this planet to bring glory to God! I don’t work for these people that really don’t care about me. So, I shouldn’t worry about the way they are treating me and what they are doing to me because it doesn’t matter. I am not here to make them happy but to make my Savior happy.  If they don’t like what it is that I am doing, as long as it is what God is calling me to do, I don’t need to concern myself with it.

The last thing that this guy said to me was to thank me for being so mature and nice about the fact that he was essentially firing me. I actually took pride in that statement. I knew that it was only with God’s presence in my life that allowed me to be calm about the entire ordeal. It was God’s calming influence in my life that had gotten me through being called names, talked down to, berated in front of co-workers and made to feel worthless.  It was the peace that God had given me that allowed me to feel that everything was going to be alright. And all of that came because I remembered who it was that I was working for.  Honestly, in my mind, I didn’t know how else I was supposed to be. I had no clue what it was that he expected me to do because in my mind, he was not my employer. Not because he had fired me but because at the end of the day, I didn’t work for him. I was employed by God to do what God wanted me to do.

The fact that I work for God and not some guy that physically signs my paycheck is something that I sometimes forget. When life get crazy and people get on my nerves, I tend to get irritated and upset. When I don’t feel appreciated or like anybody cares, I get frustrated and want to lash out.  I have to stop that. I have to remember that I work for the Lord. As long as I am doing what he has called me to do, I can be happy with the job that I am doing regardless of what is going around me. If He is happy with the work that I am doing, that is all that matters.

So, the next time you feel that people are not appreciative of all you do, or they make things difficult or uncomfortable for you, remember that you really don’t work for them. You work the God and as long as He is happy with you, that is all that really matters. I can take joy in the job that I am doing today because I know that it is where God wants me to be and I am doing what He has called me to do at this point in my life.  As anybody knows, to get ahead at your job, you need to be the best employee you can be. You have to take pride in the company you work for and exhibit the values and beliefs of that company as you go about your day to day life. God is your employer. This life and the world we live in is your company. It is your job to do everything you can to bring glory to Him and to make other people want to be a part of this wonderful company we are already employees of.

Whatever you do

It all matters

So do what you do

Don't ever forget

To do everything you do to the glory of the One who made you,

Cause He made you

To do

Every little thing that you do

To bring a smile to His face

And tell the story of grace

Supporting the HDSA and Team Hope

The Huntington's Disease Society of America (HDSA) is a very important part of many families that are dealing with Huntington's Disease. It can be summed up in their tag line "Help for today, Hope for tomorrow". That is what they strive to do. Provide help for those families dealing with HD in the form of education, support groups and research for medications that are helping so many people live with this disease.  Hope comes in the form of continued research in hopes that one day there might be a cure that will end the curse that is Huntington's Disease. They also work to educate the public and medical personnel about this dreaded disease.

What would eventually become the HDSA started as a small group organized by the widow of folk singer Woody Guthrie after he lost his battle to this awful disease. Much research has gone into determining the markers for this disease, where the gene that causes it was located and even discovery of medications that have had significant impact on the life of the person living with HD. A lot of the funding for this research is made possible by the Huntington's Disease Society of America. But, even though a lot of research has yielded a lot of useful information and the formation of many drugs, we haven't found a way to end the spread of this disease. So, there is still a lot of work to do. Still a lot of research that needs to be done. Still a lot of drug trials that need to be conducted. The HDSA needs the help and support of others to make these things a reality.

To help fund the research and support they provide to families is by hosting a walks across the country. The Dallas/Fort Worth area walk is taking place on October 19th this year. Would you consider sponsoring Cheryl's Kids and the HDSA in their continuing effort to provide Help for Today, Hope for Tomorrow. You can sponsoring us by making a donation at Cheryl's Kids. With your help we might one day put an end to this disease that has had an affect on so many of our family.

 

Another Reason Why Awareness Matters

I keep coming across things that show why raising awareness about Huntington's Disease matters. Reasons that all of us who are some how affected need to educate those around us so that they know what it is. Raising awareness will stop stories like one I recently read from happening...

Throughout the month of May, the HDSA has been sharing daily stories of people that are living with HD. Some are very inspirational, some are heartbreaking and some bring hope. But one of them made my head want to explode. It was one that highlighted a lot of the misinformation that people have about this disease.

The story that I read was written by a mother who's daughter was in her mid 20's and had just received a diagnosis of Huntington's Disease. She told the story of how her boyfriend's father and brother were diagnosed with HD while they were dating. But his family told her that only men got it. That it never affected women. Yes, you read that right. They seriously told her that. I would beg to differ since Robert's mother, sister and cousin have all been infected by the Huntington gene.

So, needless to say, this lady was overjoyed when she was told that she was having a girl because that meant if the dad did have the disease, her daughter wouldn't inherit it. They broke up and lost contact before her daughter was born so this mother never knew that her daughter's father also inherited the disease. Imagine her surprise when her daughter was diagnosed with HD after she had been told that females couldn't get the disease.

Awareness matters! Miseducation, misinformation or overall misunderstanding cause problems that lead to stories like this. We have a duty as those exposed to Huntington's Disease to educate those around us and raise awareness so that people are getting true and accurate information.

I ❤ Someone with HD

I just read something that got my blood boiling big time. I wanted to throw something at my computer screen or hunt down this person that wrote it and wring their neck! But that person was too ashamed to even say their name - the person chose to post as confidential. I wonder why.

So, here is how the story goes...

I was searching for a t-shirt that I had seen a couple of weeks ago. It said "I ❤ Someone with HD". So that is what I googled. The very first search result was titled "Don't Marry Someone with HD". It turns out that this was a chat forum that somebody had started. I was curious as to what this person had to say so I clicked and looked at the forum.  This lady - because she refers to herself as a mother of some children - went on and on about how HD ruined her life and the life of her kids. She even went on to say that people with HD shouldn't get married or have children because it will ruin their lives. Apparently she was very bitter that her husband was diagnosed HD and had never told her that he might have it.

Every person has their own thoughts and opinions on the issue. I can respect the difference of opinion and won't be telling you if you are right or wrong. It is not my place.
 
Instead, I will share the reasons why I married my husband even though I knew he was HD positive and even though I knew that I had not chosen an easy path. I did it because of the simple fact that I love him with all of my heart and cannot imagine my life without him in it. I wouldn't have traded the last 10 years of our life for anything and look forward to many more amazing years with him. We have had a great time and made some wonderful memories that I will cherish for the rest of my life. If I had walked away from the man that God had chosen for me simply because it was going to be a struggle at some point down the road, I would have missed out on so much. I have always said I would rather have 10 minutes of happiness with the man I love versus a lifetime of never having had the chance. I still feel that way today.

Robert's grandmother always said that if she had known that her husband had HD, she never would have had children. She never would have taken that chance of her children inheriting the disease. I do understand that. But the one thing that I go back to is this. She had 3 children. Only 1 of them inherited the disease. The other two do not have it. You have no way of ever knowing if your children will get the disease or if they will be spared. Then, Robert's mother had 5 children. Only three of the five have the disease. And I know there are a lot of people out there that can honestly say the world is a better place having had Robert in it. I know I certainly think so.

The lady in this forum said she was going to become an advocate to support the idea that people with HD should never get married and never have children. Why not? Do they not deserve the chance at the same kind of happiness as everyone else in the world? Do they not deserve to lead normal, quality lives as long as they can until the disease takes over?

I do get that the disease can wreak havoc on more than just the person who is infected. As someone told me, it is more than just the person caring the disease that lives with it. The friends and family of the one infected live with it, too. It certainly isn't an easy road to walk. But, they are people just like everybody else and they deserve happiness just like everybody else. Leading a normal life and creating great memories will help to get a lot of people through the more difficult years to come.

Thankfully, most people in the forum responded by calling her out on her negativity and told her that she was wrong in her thoughts. I would have shared a few words with her, too but it seems the forum was closed for additional posts so I missed out. But, for anybody else out there, I just want to go on record that choosing not to marry someone because of something that will happen down the road at an unforeseen date. Would you rather have 10 years of wonderful memories with a person before they got sick or be alone and miss out on those memories because you knew they were going to be sick? I know my answer. Do you?

Not Talking About It Is Not The Answer

At a recent support group meeting, we were joined be a young girl. She is in her mid to late 20's and had recently been told she was gene positive for Huntington's Disease. She had lost her mother recently to the disease and her brother was in the advance stages of the disease. Even though she was not experiencing any of the symptoms, she made the difficult choice to determine if she had the disease. So, when she came here for the first time, she was dealing with a lot.

At the end of the meeting, she stayed to talk and actually asked Robert and I several questions. We did our best to answer them. Then, there was another lady who joined in the conversation. She was an older lady who was married to a gentleman who was in what would be classified as mid-stage. He showed obvious signs of chorea and was having trouble with coordination and some cognitive issues as well. The only thing that she really said was that the young lady should not talk about it and never tell anybody that she had the disease. It should never be discussed.

That bothered me. While I do understand that you might not want to necessarily share the information with your place of employment or your life insurance company, you need to talk about it. Your friends and family need to know about it. Others that have no experience with this disease and have never heard about it need to know about this disease. It has to be talked about.

One of the problems with Huntington's Disease in years past is that it was never really talked about. It was always that mom, dad, grandpa or whatever family member it was, was just sick. As a result they were often thought of as drunk or misdiagnosed as schizophrenic or another mental disorder. They might be told they had any of a number of disease but the one that the person really had. Because nobody was talking about. Because nobody understood the disease or knew that it was really what Aunt Sue was suffering from. So, not talking about it is not the answer.

To raise awareness, it has to be talked about. People who know about the disease because of a family member, a friend or even the person themselves has it needs to talk about it. In situations like Robert, this young lady and many others, it needs to be shown that even though the disease will kill you eventually, it does not mean that life has to end. Many people with HD have had wonderful lives even after their diagnosis. Granted, some of them got diagnosed before they began experience symptoms and not everybody has that luxury. But I have had the opportunity to see people that are in the mid stages of the disease and even some in the later stages of the disease. They all have been able to lead lives they could be proud of while living with the disease.

What I am saying is this: We have to talk about the disease. To raise awareness of this disease and the need to find a cure we need to talk about it. While you may not want to tell the world that you personally have it, you can still work to educate people so that they are not uninformed.

So, if you know about it, if you have experience with it in any way shape of form, you need to tell others about it. Educating others will raise awareness. Educating others will help to spread the word and give us a better chance of finding somebody that may be able to find the cure to put an end to this dreadful disease that plagues generation after generation after generation.

Huntington's Disease Awareness - Why It Matters

Over the last couple of years, May has become a very important month to me. It is the month that has been designated as Huntington's Disease Awareness month. The goal is to raise awareness of the disease and how it affects not only the person with the diagnosis but also the family and friends around them. Because awareness of the disease matters.

This is something that is very close to my heart and the hearts of many of my family members because we are that group that is living with Huntington's Disease as a day - to - day reality of our lives. It may not be something that has an obvious impact on what I do every day, but it is there, constantly in the background of my thoughts. It is the reality of being in love with someone who carries around a positive diagnosis of Huntington's Disease.

One thing that makes all of this hard is the lack of knowledge that so many people have of Huntington's Disease. As I have always said, I know that better than anybody because I was one of them until Robert walked in to my life almost 11 years ago. When he first told me about it, I had no clue what it was. I had never heard of it before. So, I get the blank stares. I was one of them. But we need to change that. We need to raise awareness of this disease so that others know about it; so that others are aware of it and what it means. Raising awareness and knowledge about HD is important to help gain understanding of what the people or going through.

My knowledge of HD has changed how I view a lot of things around me. For one, when I see that person who looks like they are stumbling around like they are drunk, I wonder if that is really the case. Many people with HD appear to be drunk without a drop of alcohol in them. Prior to 1993, it was much more difficult to test for HD and many people were often misdiagnosed with other issues. The limited amount of knowledge about the disease and difficult testing and diagnosis of the HD gene. So, many people were walking around without the knowledge of HD. Understanding how the disease can affect a person matters.

Plus, even now, when we know so much about it, there is still a lot of the unknown.  It is hard to receive proper treatment for the symptoms a person faces. It is very hard to find a doctor that specializes or has adequate knowledge on how to treat an HD patient. In a previous blog, I talked about how Robert was given a medication to treat symptoms of HD when it wasn't even HD. If this first neurologist that he went to had more knowledge of HD, she might have understood that what he was experiencing had nothing to do with HD. Luckily we have been able to find a more experience neurologist in our area through recommendations of people in our support group. But, not everybody is as fortunate to live in an area that has a truly knowledge doctor. Raising awareness for doctors and teaching them about HD so they can adequately treat patients matters.

So, I hope that you will take a moment to read What is Huntington's Disease or visit The Huntington's Disease Society of America website and learn a little bit more about Huntington's Disease. To find a cure, we have to educate the world so they can understand. To help friends understand what Robert's family is going through, they have to be educate.  May is Huntington's Disease Awareness month and I want to make everyone aware of why this matters - not only to me and Robert but to the nearly 30,000 in the United States that have been given an HD diagnosis and their families as well. The impact of this disease is felt on so many more than just that those 30,000 that have been diagnosed.

 

 

What Does Fast Track Status From the FDA Mean for You and Me?

A few days ago, the Food and Drug Administration (FDA) granted fast track status to a new potential drug to help people with Huntington's Disease.  This drug currently named as OMS824 is an inhibitor that can help to suppress one of the enzymes in the brain that has been linked to Huntington's Disease. That got me excited. And makes me wonder what exactly that means. Thank you Google for making it easier to research and find the answers.


The FDA's Fast Track program designates a drug as a fast track drug "if it is intended, whether alone or in combination with one or more drugs, for the treatment of a serious or life-threatening disease or condition AND it demonstrates the potential to address unmet medical needs for such a disease or condition." according to the FDA's website. We have already established that HD is a serious and life-threatening disease for which there is no cure. So, it meets the first criteria for Fast Track Status. In initial tests, OMS824 has shown to effectively inhibit the production of an enzyme that is linked to HD. That sounds like it meets a current unmet need for those living with HD. So, thank you to the FDA for realizing this and granting Fast Track Status.


The fast track designation means that it is given more access to the FDA for the sole purpose of speeding up the development of the drug. There is more interaction with FDA review team for the product including more frequent meetings to discuss the development of the drug and more communications from the FDA about the design of the trails and what can and cannot be used.


In a nutshell, from what I have been able to find out, is that a fast track designation will make it easier for the company that is developing the potential drug to interact with the FDA and make sure it is meeting and maintaining all of the appropriate criteria to allow continued development of the drug. So, it might speed up the whole process of getting this new drug tested and to market if the clinical trails are as successful as everyone hopes.


It can still take a few years for all of this to happen but it may be even closer than we think. I think it also means that science is getting closer and I am really hopeful of seeing something to end this horrific disease in my lifetime.