Highlights from the Journal of HD

Posted on at October 18, 2017
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Original Article: Simpson JA, Lovecky D, Kogan J, et al. Survey of the Huntington’s Disease Patient and Caregiver Community Reveals Most Impactful Symptoms and Treatment Needs. J Huntingtons Dis. 2016 Dec 15;5(4):395-403.

In 2012, the US Food and Drug Administration (FDA) launched a Patient-Focused Drug Development Initiative as required under the fifth authorization of the Prescription Drug User Fee Act. The goal of this initiative was to systematically gather patients’ perspectives on their conditions and the available therapies to treat them. As part of this initiative, the FDA scheduled approximately 20 public meetings, each focused on a specific disease area. HD was chosen as one of the diseases for public input. After announcing that the meeting would be held in 2015, the Huntington’s Disease Society of America (HDSA) distributed two surveys to solicit specific comments from HD patients and their caregivers regarding symptomatology, quality of life, and therapeutic needs. The HD community responded enthusiastically, with 2,591 people providing answers for questions in the symptom-focused survey, and 1,040 people providing answers to questions in the treatment-focused survey. The objectives of these surveys were to identify the specific symptoms that most impact the daily lives of individuals with HD or juvenile HD (JHD) and their caregivers, and to identify the types of treatments desired by HD-affected families.

Although HD has long been classified as a motor disease, analysis of the data revealed that individuals with HD/JHD perceived symptoms related to dysexecutive syndrome to be most impactful (22% of responses). Caregivers responded even more strongly regarding the impact of dysexecutive syndrome, with 54% of caregivers identifying a combination of behavioral and cognitive symptoms such as anger/rage, anxiety, cognitive decline, and depression/apathy as having the greatest impact on daily life.

Figure: HD patient and caregiver perspectives on frequency of HD symptom experience. HD patient (N=248), HD caregiver (N=731). Figure from Simpson JA, Lovecky D, Kogan J, Vet al. Survey of the Huntington’s Disease Patient and Caregiver Community Reveals Most Impactful Symptoms and Treatment Needs. J Huntingtons Dis. 2016 Dec 15;5(4):395-403.

Although caregivers and HD patients aligned on some responses, there were also major divergences between the two groups. Perceptions of symptom frequency differ vastly between HD patients and their caregivers (See Figure). Nearly 14% of the 248 individuals with HD/JHD reported that they never experience HD symptoms, while just 1% of caregivers reported that they never observe symptoms in their loved ones. Greater than 80% of caregivers said they constantly saw symptoms in their loved ones, while less than 35% of individuals with HD/JHD reported constant HD symptoms.

Caregivers also responded more frequently that their loved ones with HD had completely lost their ability to perform a task, with 60% responding that their loved ones had completely lost the ability to work, drive, manage finances, take care of family, multi-task, or engage in a sex life. More than 85% of caregivers responded that their loved ones had completely lost their employability, while only 47% of individuals with HD/JHD responded similarly. Less than 50% of HD/JHD respondents said that they had completely lost the ability to do any of the 19 daily tasks listed in the survey. Caregivers also reported cognitive symptoms at greater rates compared to individuals with HD/JHD. However, data for both caregivers and individuals with HD/JHD suggest that an inability to maintain employment was among the most frequently experienced effects of HD on their lives.

When discussing treatments, data showed that very few individuals were taking any prescribed or not prescribed medications for some of the most impactful symptoms of the disease, such as dysexecutive syndrome. More than 80% of respondents noted that they or their loved ones with HD were not taking any kind of medication for deterioration in memory and thinking. Similarly, more than 40% of respondents noted that they or their loved ones were not using any form of medication to manage perseveration or anxiety, which can also be associated with dysexecutive syndrome. The only FDA-approved drug to treat a symptom of HD is tetrabenazine (Xenazine), which is used to treat chorea associated with HD. Even with an FDA-approved treatment, nearly 40% of respondents reported being unaware of, or not using, any medication to treat chorea. Just 23% of respondents reported taking tetrabenazine to treat chorea.

The efforts of the FDA in the implementation of the patient-focused drug development meetings are already creating a positive impact on the lives of patients across the spectrum of diseases. Patient and caregiver perspectives on HD symptomatology and treatment efficacy will be critical components in shaping future HD clinical development efforts. With this information, we can tailor clinical development efforts to treat the symptoms that those impacted by HD believe are the most disruptive.

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    In December of 2017, Donald Trump made history by recognizing Jerusalem as the captial of Israel. Why is this big news? Because by this the Jewish people of Israel are now able to press forward in bringing about the Third Temple prophesied in the Bible.

    The Jewish people deny Jesus as their Messiah and have stated that their Messiah has been identified and is waiting to be revealed. They say this man will rule the world under a one world religion called “spiritualism”.

    They even printed a coin to raise money for the Temple with Donald Trumps face on the front and with king Cyrus'(who built the second Temple) behind him. On the back of the coin is an image of the third Temple.

    The Bible says this false Messiah who seats himself in the Third Temple will be thee antichrist that will bring about the Great Tribulation, though the Jewish people believe he will bring about world peace. It will be a false peace for a period of time. You can watch interviews of Jewish Rabbi’s in Israel speaking of these things. They have their plans set in place. It is only years away!

    More importantly, the power that runs the world wants to put a RFID microchip in our body making us total slaves to them. This chip matches perfectly with the Mark of the Beast in the Bible, more specifically Revelation 13:16-18:

    He causes all, both small and great, rich and poor, free and slave, to receive a mark on their right hand or on their foreheads, and that no one may buy or sell except one who has the mark or the name of the beast, or the number of his name.

    Here is wisdom. Let him who has understanding calculate the number of the beast, for it is the number of a man: His number is 666.

    Referring to the last days, this could only be speaking of a cashless society, which we have yet to see, but are heading towards. Otherwise, we could still buy or sell without the mark amongst others if physical money was still currency. RFID microchip implant technology will be the future of a one world cashless society containing digital currency. It will be implanted in the right-hand or the forehead, and we cannot buy or sell without it! We must grow strong in Jesus. AT ALL COSTS, DO NOT TAKE IT!

    Then a third angel followed them, saying with a loud voice, “If anyone worships the beast and his image, and receives his mark on his forehead or on his hand, he himself shall also drink of the wine of the wrath of God, which is poured out full strength into the cup of His indignation. He shall be tormented with fire and brimstone in the presence of the holy angels and in the presence of the Lamb. And the smoke of their torment ascends forever and ever; and they have no rest day or night, who worship the beast and his image, and whoever receives the mark of his name.” (Revelation 14:9-11).

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    Jewish Rabbis have publicly announced that their Messiah will be revealed in the coming years who will be a leader and spiritual guide to all nations, gathering all religions under the worship of one God.

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    More importantly, the power that runs the world wants to put a RFID microchip in our body making us total slaves to them. This chip matches perfectly with the Mark of the Beast in the Bible, more specifically in Revelation 13:16-18:

    “He causes all, both small and great, rich and poor, free and slave, to receive a mark on their right hand or on their foreheads, and that no one may buy or sell except one who has the mark or the name of the beast, or the number of his name.

    Here is wisdom. Let him who has understanding calculate the number of the beast, for it is the number of a man: His number is 666.”

    Referring to the last days, this could only be speaking of a cashless society, which we have yet to see, but are heading towards. Otherwise, we could still buy or sell without the mark amongst others if physical money was still currency. This Mark couldn’t be spiritual because the word references two different physical locations. If it was spiritual it would just say in the forehead. RFID microchip implant technology will be the future of a one world cashless society containing digital currency. It will be implanted in the right-hand or the forehead, and we cannot buy or sell without it. Revelation 13:11-18 tells us that a false prophet will arise on the world scene doing miracles before men, deceiving them to receive this Mark. Do not be deceived! We must grow strong in Jesus. AT ALL COSTS, DO NOT TAKE IT!

    “Then a third angel followed them, saying with a loud voice, “If anyone worships the beast and his image, and receives his mark on his forehead or on his hand, he himself shall also drink of the wine of the wrath of God, which is poured out full strength into the cup of His indignation. He shall be tormented with fire and brimstone in the presence of the holy angels and in the presence of the Lamb. And the smoke of their torment ascends forever and ever; and they have no rest day or night, who worship the beast and his image, and whoever receives the mark of his name” (Revelation 14:9-11).

    People have been saying the end is coming for many years, but we needed two key things. One, the Third Temple, and two, the technology for a cashless society to fulfill the prophecy of the Mark of the Beast.

    Visit http://WWW.BIBLEFREEDOM.COM to see proof for these things and why the Bible truly is the word of God!

    If you haven’t already, it is time to seek God with all your heart. Jesus loves you more than you could imagine. He wants to have a relationship with you and redeem you from your sins. Turn to Him and repent while there is still hope! This is forever…God bless!

    “EITHER HUMAN INTELLIGENCE ULTIMATELY OWES ITS ORIGIN TO MINDLESS MATTER OR THERE IS A CREATOR…” – JOHN LENNOX

    We all know God exists. Why? Because without Him, we couldn’t prove anything at all. Do we live our lives as if we cannot know anything? No. So why is God necessary? In order to know anything for certain, you would have to know everything, or have revelation from somebody who does. Who is capable of knowing everything? God. So to know anything, you would have to be God, or know God.

    A worldview without God cannot account for the uniformity and intelligibility of nature. And why is it that we can even reason that God is the best explanation for this if there is no God? We are given reason to know or reject God, but never to know that He does not exist.

    It has been calculated by Roger Penrose that the odds of the initial conditions for the big bang to produce the universe that we see to be a number so big, that we could put a zero on every particle in the universe, and even that would not be enough to use every zero. What are the odds that God created the universe? Odds are no such thing. Who of you would gamble your life on one coin flip?

    Is there evidence that the Bible is the truth? Yes. Did you know that the creation accounts listed in the book of Genesis are not only all correct, but are also in the correct chronological order? That the Bible doesn’t say the Earth was formed in six 24-hour days but rather six long but finite periods of time? That the Bible makes 10 times more creation claims than all major “holy” books combined with no contradictions, while these other books have errors in them? The Bible stood alone by concurring with the big bang saying, “In the beginning God created the heaven and the earth” (Genesis 1:1); and says our universe is expanding, thousands of years before scientists discovered these things. Watch a potential life-changing video on the website listed below with Astronomer(PhD) Hugh Ross explaining all these facts based on published scientific data. He has authored many books, backed even by atheist scientists.

    Jesus came to pay a debt that we could not; to be our legal justifier to reconcile us back to a Holy God; only if we are willing to receive Him: “For the wages of sin is death…” (Romans 6:23).

    God so loved the world that He gave us His only begotten son, so that whoever believes in Him, through faith, shall not perish, but have everlasting life. Jesus says if we wish to enter into life to keep the commands! The two greatest commands are to love God with all your heart, soul, strength, and mind; and your neighbor as yourself. All the law hang on these commands. We must be born of and lead by the Holy Spirit, to be called children of God, to inherit the kingdom. If we are willing to humble ourselves in prayer to Jesus, to confess and forsake our sins, He is willing to give the Holy Spirit to those who keep asking of Him; giving us a new heart, leading us into all truth!

    Jesus came to free us from the bondage of sin. The everlasting fire was prepared for the devil and his angels due to disobedience to God’s law. If we do the same, what makes us any different than the devil? Jesus says unless we repent, we shall perish. For sin is the transgression of the law. We must walk in the Spirit so we may not fulfill the lusts of the flesh, being hatred, fornication, drunkenness and the like. Whoever practices such things will not inherit the kingdom (Galatians 5:16-26). If we sin, we may come before Jesus to ask for forgiveness (1 John 2:1-2). Evil thoughts are not sins, but rather temptations. It is not until these thoughts conceive and give birth by our own desires that they become sin (James 1:12-15). When we sin, we become in the likeness of the devil’s image, for he who sins is of the devil (1 John 3:8); but if we obey Jesus, in the image of God. For without holiness, we shall not see the Lord (Hebrews 12:14).

    The oldest religion in the world is holiness through faith (James 1:27). What religion did Adam and Eve follow before the fall? Jesus, Who became the last Adam, what religion does He follow? Is He not holy? He never told us to follow the rituals and traditions of man but to take up our cross and follow Him (Luke 9:23). There are many false doctrines being taught leading people astray. This is why we need the Holy Spirit for discernment. Unlike religion, holiness cannot be created. It is given to us from above by the baptism of the Spirit. Jesus is more than a religion; He is about having a personal relationship with the Father. Start by reading the Gospel of Matthew, to hear the words of God, to know His character and commandments. Follow and obey Jesus, for He is the way, the truth, and the life!

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