Petition to Social Security Administration
Add Narcolepsy as a qualifying condition to The Social Security Blue Book
Please sign this petition to list Narcolepsy as a qualified disabling condition in the Social Security Blue Book. Why should Narcolepsy be listed among the list of conditions in the Social Security Blue Book? Narcolepsy is a condition that adversely affects functions of everyday life. It is very misunderstood but it's effects are far reaching. It is incurable and it takes many Narcoleptics years before they can find the right combination of medications to become semi-functional. It is physically and mentally debilitating. The missing Orexins, now believed to be one of the main precursors for Narcolepsy, not only affect the sleep /wake cycle, but things like metabolism, gastrointestinal functioning and cognitive functioning as well. Many PWN struggle daily putting their health, mental state and even lives at risk at times. Many go from job to job because it is impossible to maintain stable employment with any given employer for lengthy periods. Because many persons with Narcolepsy, or PWN as it is often abbreviated, have difficulty maintaining employment for long periods, it is nearly impossible to advance, maintain seniority or keep a job long enough to manage a decent pay raise to reach a livable salary. Few people know what narcolepsy is. Of those few, many see it as just a sleep disorder in which the person with the condition sleeps more than the average person. This is incorrect. Narcolepsy impacts other important physiological functions. What is Narcolepsy? In a healthy brain there is a small population of specialized cells in the hypothalamus called orexin neurons. These orexin neurons produce a neuropeptide called orexin. Orexin acts as a neurotransmitter. It's primary function appears to be arousal (regulation of the sleep/wake cycle), food seeking and appetite. When, through a process which is not yet confirmed but is suspected to be autoimmune in nature these orexin neurons are either completely or partially killed off, orexin becomes unavailable or its availability becomes severely reduced. The result is that the transmission of neural messages done by orexin, called orexinergic signaling, is unavailable or drastically limited. When that happens, several very clearly identifiable physical symptoms become manifest in a person. That group of symptoms is what we call narcolepsy. Orexin directly regulates or is involved in the regulation of serotonin, adrenaline, histamine, dopamine, acetylcholine, norepinephrine, GABA and glutamine, among others. When there isn't enough orexin these other systems become dysregulated and fail, causing the further dysregulation of other systems. These are what are known as cascading failures. One of the most important points to understand about narcolepsy is one that escapes most people, including many physicians. It is this: when orexinergic signaling is absent or insufficient, other things go wrong in the body that manifest themselves in ways that appear to be unrelated to narcolepsy. Insufficient or unavailable orexinergic signaling results in the dysregulation of a wide range of processes throughout the body such as the autonomic and sympathetic nervous systems (breathing, blood pressure and heart rate regulation, intestinal motility, homeostasis, etc.) executive function and cognition, olfactory perception, motivation, arousal and feeding, sex drive, psychological processes such as mood, and of course the sleep wake cycle, to name just a few. Narcolepsy used to be known as a sleep disorder because the night time sleep of narcoleptics is interrupted, resulting in a lack of restful or restorative sleep. However, narcolepsy was recently reclassified as neurological disorder, with Type 1 narcolepsy (with cataplexy) occurring in 65-70% of patients. Most of the remaining sufferers fall into the category of Type 2 narcolepsy (without cataplexy). The ADA, or Americans With Disabilities Act, defines a person with a disability as “a person who has a physical or mental impairment that substantially limits one or more major life activity." Narcolepsy is a rare, chronic illness that substantially impacts multiple life activities. It is a neurological sleep disorder where the brain is no longer able to properly control the sleep/wake cycle. Because the brain does not follow the normal sleep cycle, the physical and cognitive abilities of a person with Narcolepsy are continuously impaired. In order for a person without Narcolepsy to experience an "everyday tired" for someone with Narcolepsy, they would literally have to stay awake 48 to 72 hours. That is 48 to 72 hours with no sleep. Sleep is the most important function of the body. A person can survive longer without food than they can without sleep. Sleep is necessary for the body to restore and heal itself. Sleep is necessary to fight off disease. Anyone who has ever pulled an all-nighter or two for a test or to finish a project has experienced that slow, groggy feeling you get when you haven't had enough sleep. Anyone who has had to pull over to rest during a long distance drive has experienced the slowing of reflexes that can't be avoided when you are extremely sleepy. People who suffer from Narcolepsy are often at risk of falling asleep at inopportune and even dangerous times. Many suffer from Cataplexy (sudden muscle weakness), Hypnagogic & Hypnopompic Hallucinations (upon falling asleep and upon waking), and Sleep Paralysis; in addition to debilitating Excessive Daytime Sleepiness. Because it is a neurological sleep disorder, the effects are both physical and cognitive. Despite all of these substantial limitations on major life activities, Narcolepsy is not specifically listed in the Social Security Blue Book as a qualified disability. The Blue Book is the Social Security Administration's complete listing of impairments used to determine disability benefits. There are many people with Narcolepsy who are struggling, going from job to job trying to survive. They are putting their health and sometimes their lives at risk, forcing themselves to work beyond limitations. These are everyday tasks most take for granted. There is a lot of misunderstanding and misinformation regarding Narcolepsy. I am listing some pertinent facts as to illustrate the effects of Narcolepsy. Narcolepsy is a lifelong chronic illness which has no cure Although there are treatments to help aid with the symptoms of Narcolepsy, there is no one proven method. It may take a person with Narcolepsy as much as several years to find the right combination of medications in order to function at just a partially normal level. It can take an average of 10-15 years for a PWN (Person with Narcolepsy) to be correctly diagnosed. Narcolepsy can impact nearly every aspect of your life. It is dangerous because you can have excessive sleepiness or a sleep attack at any time of the day, in the middle of any activity including eating, walking or driving. Operating a vehicle with untreated narcolepsy can be very dangerous and some states even have laws against it Cataplexy is a sudden and transient episode of muscle weakness accompanied by full conscious awareness, typically triggered by emotions. Laughing, crying, terror, stress, and anxiety are a few examples of such emotions. Many people believe because they are frequently tired, it is the same as Narcolepsy. This is not the case. PWN are pathologically "sleepy", not just tired. This means that, while a person with Narcolepsy does not necessarily sleep more or less than a person without Narcolepsy, they will experience an almost, if not completely, uncontrollable need to fall asleep most times. For more information on Narcolepsy here are some websites: www.moreawake.com www.narcolepsynetwork.org http://www.ninds.nih.gov/disorders/narcolepsy/narcolepsy.htm
Petition to Mayor Levar Stoney
Help Our Loved Ones Get What They DESERVE- The Proper Prescriptions (End Reduction)
Hello, my dear fellow Americans. The reason that this petition is being started is that we have a CRISIS on our hands. Our family members, our loved ones, our veterans, and even ourselves, are at the absolute MERCY of them that call themselves our leadership, and enough is ENOUGH. Due to the 'Opioid Epidemic', there's not only a PUSH to do, but an actual REDUCTION in the quantity of prescribed medication for chronic pain sufferers in need, already taking place. I'm NOT here to discuss the 'Epidemic', but only the reality of the need for the medication, and in my opinion, and others, the unlawful, inhumane, and involuntary reduction of the necessary prescriptions. Yes, there may be people abusing the system, however, are we to allow potentially millions of OUR LOVED ONES to suffer unbearable pain for WEEKS on end, EVERY month, to possibly, not certainly, stop what could be a manufactured problem? The reduction is sudden, and without a system or alternative means in place, from what I have heard from first hand accounts. For instance, I know someone personally that had major surgery,and even deals with NERVE DAMAGE. They were receiving over 100 pain pills to last them the entire month prior to this action. All of a sudden, their quantity was reduced significantly. This went on for months, and now they have received another reduction, to an amazing less than HALF of their original supply!!! This is only ONE STORY of people I know personally, not the potential MILLIONS nationally that are experiencing this INJUSTICE. CBD OIL is making waves for its pain reduction capabilities. This is an option, YET, not only its FULL LEGALITY nationwide, but its PRESCRIPTION. Insurance companies should be held liable to pay for these oils for the clients that make them ridiculously wealthy year after year. In conclusion, this petition is to AWAKEN the people, hold accountable them that are in charge of these decisions, and RESTORE THE PRESCRIPTION QUANTITY TO OUR LOVED ONES, AND THOSE THAT HAVE FOUGHT AND SACRIFICED LIFE AND LIMB FOR THIS NATION, with CBD OIL and other NATURAL solutions that are being kept away from the population OR DEMONIZED in efforts to establish continued WEALTH for the pharmaceutical companies. Thank You...
Petition to U.S. Senate, U.S. House of Representatives
Healthcare For All
With the passage of the Affordable Care Act (ACA) by the Obama Administration, millions of Americans gained access to health insurance for the first time. It was undoubtedly a monumental achievement, but despite the reforms of the ACA, tens of millions of Americans are still uninsured or under-insured and unable to afford high priced premiums, deductibles, and co-payments. With the passage of the Republican repeal bill, the so-called American Healthcare Act, the future of the ACA is at risk and we now have a chance to build something even better. Please sign your name if you agree that, now more than ever, we must move to a “Medicare For All” single payer healthcare system. U.S. Representative John Conyers (D-MI) has already introduced legislation that would do just that: H.R. 676, the Expanded and Improved Medicare For All Act, which would provide universal coverage for all medical care, while ending premiums, deductibles, and co-payments. It would save consumers, employers, and taxpayers hundreds of billions of dollars annually by eliminating the high overhead and profits of the private health insurance industry. The bill has 108 House co-sponsors and that number is growing every day. I have traveled throughout the state of Florida meeting with senior citizens, rank-and-file workers and families, all of whom tell me that their number one concern is the rising cost of premiums, co-payments, and prescription drugs. Healthcare is a human right – please join me in calling on Congress to make that right accessible to all Americans. The GOP’s health plan gives even more power to private insurance companies and Big Pharma. It will end healthcare for 24 million Americans, raise premiums for millions of people with pre-existing conditions and gut funding from Medicare and Medicaid – all to give $600 billion in tax breaks to the rich and powerful. Together we’re demanding that Congress work for the America people, not Wall Street billionaires. Thank you for taking the time to support H.R. 676, Medicare For All – because we all need and deserve universal health care for ourselves, our families, and for our children’s future.
Petition to Mitch McConnell, U.S. Senate
Patients must be at the center of the healthcare debate.
As members of bio and health tech industries, as individuals dedicated to improving the lives of patients everywhere by increasing access to and choice of care, and as citizens who advocate on behalf of patients and their rights: We urge you to slow down the rate at which the current Senate healthcare bill is being drafted, and to open the debate to include more voices - in particular, the voices of patients to whom this legislation will be most impactful. Healthcare represents 1/6th of the United States’ economy. More importantly, access to healthcare becomes essential to every American at some point in each of our lives. Whether we are talking about a pregnant woman in Tulsa, a young man in San Francisco, or a senior citizen in Montgomery, access to healthcare is a fundamental human necessity. We therefore advocate a debating process that includes all relevant and impacted voices, from the voice of the patient to the voice of research institutions, and to every voice in between. It concerns us that the Congress is moving to enact sweeping changes to the United States healthcare system without first engaging in open dialogue with all relevant parties. A vote on this bill was being rushed to be held before the July 4th Congressional recess, and will be rushed to a vote after the recess; we do not believe that this represents a fair nor rational action. It concerns us that much of the drafting of the Senate bill happened behind closed doors. The Affordable Care Act was the result of 15 months of public hearings; any new healthcare legislation should be held to no less a standard. And it especially dismays us that a coalition of more than 15 patient groups - including the American Heart Association, the March of Dimes, the American Lung Association, and the American Diabetes Association - was denied a meeting with Majority Leader McConnell. Further, it alarms us to see peaceful protesters - some in wheelchairs - forcibly removed by security before being heard by their representatives. Any changes to our healthcare system must be informed at their core by strong patient voices; we do not believe favorable outcomes for a majority of Americans can come without first listening to the concerns and recommendations of the patient community. We urge the Congress to welcome these diverse voices to the conversation. We believe that all Americans stand in favor of more inclusive and affordable access to healthcare. We agree that there is much to improve in our current system. As citizens and companies dedicated to serving patients, we urge Congress to ensure that any new legislation be the result of an open and carefully considered process of rigorous and productive debate, with a robust representation of patient voices at its core.
Petition to The Department for Health and Social Care, Michelle Obama, Scott Morrison, António Guterres, Justin Trudeau, Emmanuel Macron, Pedro Sánchez, United States Department of Health and Human Services, United Nations, Ban Ki-moon (Secretary-General of the United Nations), Council of the European Union, SameYou
Let's Help Emilia Clarke & SameYou Save Lives
According to the Lancet Neurology Commission, 50 million people worldwide suffer from brain injury, annually. If you sign this petition and spread this message through all platforms, however, we can work towards making life better for those who could never fully recover, by promoting and benefiting SameYou, a charity that works to increase funding and access to neuro-rehabilitation worldwide. Maybe you are someone who has been through this, who is going through this, who will go through this, who knows/loves someone who is going through this, or maybe not. Either way, I beg you to please help this cause, and visit sameyou.org. Here you will be able to donate directly to the cause, learn more about both the charity and issue, and make a huge difference. Please help me, help them, help everyone, I beg you. Thank you.
Petition to Stevie Nicks, Stephen King, Tiger Woods, mick jagger, Paris Jackson, Drew Barrymore, elton john, Robert Downey Jr, Eric Clapton, Edie Falco, Daniel Radcliffe, Jamie Lee Curtis, Michael Irvin, Angelina Jolie, Snoop, Future, Leo Dicarpio, Jack and Kelly Osbourne, Ozzy and Sharon Osbourne, Hulk Nick and Kelly Hogan, Mick Fleetwood, courtney love, Russell Brand, Tim Allen, dribbble , shopify, Spotify, Apple, Microsoft, Ada, . Columbus Short, Lil’ Wayne, Steven Tyler, Eric and Julia Roberts, Keith Urban & Nicole Kidman, Eminem, Samuel L Jackson, Lamar Odom, Wendy Williams, tip, SUPREME COURT, United States House of Representatives, Congress, 1600 Pennsylvania Avenue, NPR, Cannabis Community, artists, Storytellers , victims, advocates, addicted, Afflicted , All-Inclusive , Johnny Depp, lindsey lohan, One Disease | One Voice | DeStigmatize | make Disability, OUDcollective | Rockin Chair Panel | Resolution 05TEN19
Draft #OpioidEpidemicResolution Article 05TEN19
1. Change the Perspectivead·dic·tion/əˈdikSH(ə)n | noun: addictionthe fact or condition of being addicted to a particular substance, thing, or activity.He committed the theft to finance his drug addiction. He blamed Murray for his heroin addiction. Source: google.com Our texts. Our dictionaries. Our moral fabric. Associate Theft, Blame, and Criminality with addiction. Yet, that's not how it's defined. If all Criminals are addicts then that's acceptable, But. Are ALL criminals addicts? Further, are all addicts criminals? NO, they are NOT. So, We must | the addicted and afflicted | Take back this disease. Own it. Shine an all-new collective light on the disease. As most people on this list are already trying to do. Unified, with a singular, powerful message (propaganda, just reverse propaganda) 2. Alter perception. Own the affliction. Redefine it as Disability. Using HIV | Aids Blueprint in combating their current epidemic. They were successful after many years of stigma and discrimination to get it classified and covered under the ADA of 1990 | Americans with Disabilities Act of 1990 3. De-stigmatize.Bring the disease to the dinner table conversation and out of the silence, it sits in as a stigma to society...They (HIV | AIDS activists) also had Magic, and Freddie Mercury, among others. Live Aid shows and groups of musicians artists, and storytellers taking back the narrative... We must do as Magic Johnson did for HIV when he went and played in the Olympics. 4. Partner with the Cannabis community.Ffor potential alternative medicinal remedies such as CBD. 5. Strategy. It has started, We're lacking a community. Come on in, we got a whole Rockin Chair Panel. https://medium.com/RockinChairPanel 6. Draft #OpioidEpidemicResolution Article 05TEN19. As an OUD Collective. Never ceasing our work until it can be claimed a working solution. Let's make the addicts the answer...
Petition to Kirsten E. Gillibrand, Roger F. Wicker
We need a better healthcare system in the United States
America’s healthcare system is broken! For being one of the richest countries in the world, the U.S. has a very chaotic healthcare system. No matter the proposed solution over the past century, the system has slowly but surely become more and more expensive. This made healthcare become less and less accessible to people, especially in impoverished communities. We need change! We need Better healthcare in the United States.My name is Raziya Lewis and I live in New York City. I’m thankful for the U.S. government’s leadership and efforts to make meaningful reforms a priority so hopefully my concerns can be heard. I’m very passionate about healthcare and when I get older I want to be a doctor. I am writing this petition advocating for a better healthcare system in the United States. A reform of our nation’s healthcare system is long overdue. More than 27 million people in the United States are uninsured and nearly a tenth of the population often get very sick because they can’t afford coverage, live in a state that didn’t expand Medicaid, or are undocumented Americans with below-average incomes. Americans are much more likely than their counterparts in other countries to report not visiting a physician when sick, getting a recommended test, annual checkups, treatment, follow-up care, filling a prescription, and seeing a dentist. It is the responsibility of the government to make America better and advocate for the well-being of impoverished communities. Every American deserves the right to access good healthcare. Many people who live in the United States need help and medical attention but they are forced to ignore this due to the fact that they cannot afford to pay medical bills. There is a clear gap and inequality divide between the privileged and the poor when it comes to healthcare provisions. All Americans should have access to affordable healthcare. Congress needs to address the existing issues in healthcare such as high medical bills, co-pays, high cost for medication and unfair insurance policies. We need to fix what’s broken in our system. Unfortunately, many people don’t have the resources to help fight for a better healthcare system and this is why many leave this issue unaddressed. There is a silent cry for a better healthcare system and that cry needs to be heard. I’ve witnessed so many people who wanted change but never had the courage to speak up. Our country is in desperate need of healthcare reform and a better healthcare system for all of us. I see people struggle everyday and ignore health issues because they don’t have the money to take care of their health. It’s very sad that these people have to go through this. Reforming healthcare for the better will be a great move for our future prosperity. Please help me solve this issue that is the chaotic healthcare system that we have in this country by finding a way to make healthcare easier and more accessible for everyone. With your help, affordable health will be available for all, in a United States of America where the health and wellness of a person will never ever depend on their wealth. Thank you very much, Raziya Lewis
Petition to Julian M. Carroll, Jerry T. Miller, Morgan McGarvey, Robert Stivers II, Chris Harris, Rand Paul, Mitch McConnell, Angie Hatton, Andy Barr, Matt Bevin, Rocky Adkins, Dennis Keene
Legalized Expanded Gaming in Kentucky
As a resident of Eastern Kentucky, I encourage you to support Mr. Keene's House Bill 190 AN ACT relating to the expansion of gaming and making an appropriation therefor.. This will open up all of Kentucky to a more diverse economy. I’m sure you are aware of how much revenue we are losing to our neighboring states that have riverboat access gambling. Many states have benefited from legal brick-and-mortar casinos, off-track betting locations and state-sponsored lotteries, Kentucky citizens have proved we want expanded gaming since the 1990’s. With the teachers and state worker pension plans in the shape that they are expanded gaming can and will be the savior for retirement plans.I understand the risks of gambling addiction has always been the issue, the small percentage that occurs are already making wagers in other forms or fashions and will continue to do so. It’s plain and simple we need expanded gaming. We need the tourism, we need the tax revenue, we need the other industry that will follow from the increased population that will come from job creation.This is simply the nature of a free market. We cannot protect special interests by shutting down up-and-coming technology and businesses.Thanks for your consideration, and I again urge you to make the suggested amendment on this bill. It is not just me as a player that takes interest but the companies that will be created should this law pass.Sincerely, The Future of Eastern Kentucky 859-587-9606