Tell the FDA to stop denying ALS patients treatment options
When I became a parent, I knew immediately that I would do anything to protect my daughters from the hardest parts of life. My mission would be to give them as much love and comfort as I possibly could. But now instead of me taking care of them, my daughters are often responsible for taking care of me, because in May of 2014 I was diagnosed with ALS. Now, instead of protecting them, my daughters are forced to watch as my body dies one muscle at a time. ALS is a devastating disease, that currently has no effective FDA approved treatments. However, there are promising therapies in the FDA approval pipeline that might improve my chances and quality of life, but the FDA isn’t willing to expedite the approval of these drugs, even though the average life expectancy of an ALS patient is 3-5 years and the average time it takes for a drug to become FDA approved is over a decade. Please join me and Hope NOW for ALS in petitioning Congress and the FDA to apply Accelerated Approvals (AAP) to promising treatments targeting terminal diseases, and implement faster, smarter, and more humane clinical trials using today’s science. This is not a radical or new idea. In 1992, in response to the HIV/AIDS epidemic, the FDA adopted the Accelerated Approval Program (AAP) – an expedited approval process to treat fatal diseases. This was a process to allow patients fast access to potentially life saving drugs, and has since been used for cancer and heart failure treatments. But the FDA refuses to apply it to ALS and other rapidly fatal diseases. How can it possibly be fair to exclude the most vulnerable and at risk people -- those with fast acting terminal diseases -- from this program? ALS is always fatal, and there are currently over 30,000 patients in the US with no options. We need help. We need options. My diagnosis is the greatest challenge my family has ever faced, and my daughters have amazed me with their grace and strength in taking on this battle with me. I know that even though my life has not turned out like I imagined it, I can still be the dad I always wanted to be, and I can still show my daughters what it means to take a stand for what counts. Please join me and Hope NOW for ALS to help save my life, and the lives of so many others around the country.
Save Net Neutrality
Net neutrality preserves the right to communicate freely on the internet. Net neutrality requires internet service providers (ISPs) to give everyone equal access to everything you use on the internet-- email, watching videos, reading news articles, and listening to music. It prohibits ISPs from slowing down, speeding up, or blocking content on the internet. It is how the internet has always worked. Unfortunately, this is being threatened by the FCC- the Federal Communications Commission. If the FCC ends net neutrality, then how we’ve used the internet changes completely. ISPs will be able to block content, slow down internet access, and favor websites over others. It will also end the Title II of the Communications Act, which charges ISPs for blocking content or slowing down internet and creating “fast lanes.” “Fast lanes” would allow certain internet service providers to give internet access faster than any other service providers. Ending net neutrality could have global impacts and change the way the world shares information and changes how information is processed. As high school seniors about to enter into the real world, we cannot imagine what life would be like if we did not have net neutrality. Net neutrality allows us to use our freedom of speech on a platform that is like no other. I can go on the internet and research something without the fear that an ISP has favored a certain website that is completely biased one way or blocked certain websites. If you believe we should have free access to the internet, sign this petition to show your support. This issue is time sensitive and must be addressed. Support free and open internet! Thank you for your support, Katie Lemon
We Demand that the U. S. Senate not confirm Andrew Puzder as Secretary of Labor
Andrew Puzder is among Trump's more controversial Cabinet picks because he has publicly opposed the overtime rule and various other Department of Labor regulations, and because the fast-food industry, from which Puzder hails, is a top wage-theft enforcement target at the department. Puzder is CEO of CKE Restaurants, which includes Carl’s Jr. and Hardee's. It’s actually very hard to imagine a worse choice for Labor Secretary than Andy Puzder. The Labor Secretary’s job is to look out for American workers. Trump's Labor nominee has opposed increasing the federal minimum wage from $7.25 an hour to $10.10 an hour and efforts to expand eligibility for overtime pay. It would be kind of funny if it wasn’t so serious. During the election, Trump made a lot of promises to create good jobs. But he’s filling his cabinet with CEOs and right-wing billionaires who have spent their lives undermining working people’s rights to come together in unions, while fighting minimum wage increases, paid sick leave and family leave policies. The evidence clearly demonstrates that protecting the rights of the people who work at Puzder’s company or its franchisees doesn't seem to be his priority. Puzder has run a business model that has produced widespread labor abuses at the companies. According to data compiled by Bloomberg BNA, over the previous seven years, about 60 percent of all Labor Department investigations of Carl's Jr. Restaurants found violations of the Fair Labor Standards Act. While working people at his fast food chains sometimes were making below minimum wage, Puzder was taking big compensation packages. In 2012, he made 291 times as much as workers at his restaurants. Now, he could be in charge of enforcing our nation’s labor laws—from ensuring workplace safety to investigating wage theft. His companies had the fourth highest incidents of wage theft reported to the government. ‘Wage theft is a rampant, everyday problem in the fast-food industry: Nearly nine out of 10 fast-food workers across the country report having money stolen from their paychecks by their boss,’ Kendall Fells, the Fight for $15 national organizing director, told Bloomberg BNA via e-mail. Bloomberg reported. “Fells referred to a 2014 poll commissioned by the campaign of more than 1,000 fast-food workers nationwide. The survey documented such common worker complaints as being forced to perform tasks before clocking in or after clocking out, having the cost of uniforms deducted from their paychecks, and not receiving breaks during long shifts.” Puzder’s Carl’s Jr. restaurant chain also has a history of sexist television. He thinks it’s appropriate to peddle sex to kids if it sells the product. “We believe in putting hot models in our commercials, because ugly ones don’t sell burgers,” said the CEO in a 2011 press release, according to Fortune. “We target hungry guys, and we get young kids that want to be young hungry guys.” Let’s target Puzder’s nomination instead. Just Say No Puzder at Labor. This petition will be delivered to the full Senate and to the Health, Education, Labor, and Pensions Committee of the U.S. Senate
Change SC tether & outdoor dog laws
All throughout South Carolina dogs are being left chained to trees all night and day. Never moving or experiencing a decent life. Leaving dogs tied to trees is legal in South Carolina. With the temperatures we are experiencing now in the winter, it can get into the single digits. It is also legal to leave your dog outside (in freezing temperatures), as long as their shelter has 3 sides. This law needs to change immediately. If this petition gets enough signatures, we can help protect these animals from a life of solitude and despair. I own three dogs who are very well cared for- leaving them outside or having them chained up makes me sick thinking about it. One dog in particular I see everyday is chained up 24/7. It’s shelter is a plastic dog house. Plastic. This dog lives a miserable life and freezes in the winter and is left in the extreme heat in the summer. This is ridiculous and inhumane. The law needs to be changed immediately. Shamefully, the human race needs a law for common sense. Why have a dog if you do not want to provide the basics of caring for a living thing.
Protect SC Employees (It could’ve saved this woman’s life)
36 yr old Alicia Mitchell was walking from work at 8:21am on a usually busy road because she was told she'd be fired (confirmed via a cousin) if she didn't come in. This was apparently the Walmart MarketPlace on Ladson Rd in Ladson, SC. A 17 yr old unlicensed driver was going too fast on icy roads, lost control, slid off the road, that causing him to hit and kill Alicia. SC Governor and countless others urged people to stay home and off the roads. SC currently has no laws protecting an employees rights due to it being a right to work state and employers can let you go at any given moment for no reason at all. I believe SC needs to adopt laws protecting its citizens to avoid situations like this. Many other states have laws protecting its employees and I think it is time for SC to adopt similar laws. This lady’s death could’ve been avoided had SC citizens had laws protecting them from repercussions for simply calling out due to unsafe conditions that State Officials advised people to not travel in. She feared for her job, so she went to work, and in turn lost her life.... My hope is that officials introduce a law named Alicia’s Law or adopt similar laws as other states. Everyone please sign to help! No matter where you live your support is greatly appreciated. ❤️ Share, share, & share some more until we reach our goal. https://m.facebook.com/story.php?story_fbid=1547411458647565&id=148070675248324 http://m.live5news.com/live5news/db/348384/content/nTe1B5yH
Say Yes To Disability Rights
On February 15th, the House of Representatives passed HR620, the so-called Americans with Disabilities Education and Reform Act. Instead of stopping the few frivolous lawsuits that occur, the bill will roll back nearly thirty years of civil rights legislation for people with disabilities in the United States. By passing this bill, You will undo the foundation of the Americans with Disabilities Act, a piece of landmark legislation passed in 1990 that gives disabled people a chance at equal access to employment, education, and society in general. By voting yes, you will Force disabled people to endure a lengthy process that involves filing complaints with businesses when they face accessibility barriers. These businesses, some of which have violated the law for almost 30 years, will have up to six months to resolve accessibility issues, and even longer, if the businesses can demonstrate “substantial progress” toward resolution.No other civil rights law has ever put the burden on those it protects to start and maintain the enforcement process. HR620 places cost-cutting for business owners ahead of the human rights of people with disabilities. Imagine having to wait over six months to use the restroom, locate merchandise, or check out confidentially and independently when building codes and other provisions for your civil rights have existed for almost 3 decades. Republican Senator Jeff Flake of Arizona will soon introduce the bill to the rest of you in the United States Senate.Please, Senators, we urge you to vote against this unacceptable and unfair legislation. Do not weaken the Americans with Disabilities Act. Do not weaken current and future civil rights legislation for everyone by placing the responsibility for enforcement on those who need protection.Thank you for your attention.
Together we can help fight a disease impacting sickle cell trait carriers
My name is Cora Connor and I am writing you on behalf of the estimated 3.1 million Americans affected by Sickle Cell Trait, a common blood disorder, affecting more than three hundred million people worldwide. Individuals with this disorder only carry one defective gene and generally live normal lives. These individuals are at risk for kidney injury, as recently recognized by the NCAA, and other illness. Many people (Sickle Cell Trait carriers, family members, and even physicians) are unaware that there is a rare form of kidney cancer associated with sickle cell trait, called renal medullary carcinoma (RMC). Renal medullary carcinoma is a very aggressive form of kidney cancer and is almost exclusively seen in young African Americans, under the age of 30. The prognosis of these young patients is dismal. Typical survival is under 12 months. Renal medullary carcinoma was first discovered in 1995, but between 1995 and 2012, only 240 cases were reported to The North American Association of Central Cancer Registries (NAACCR). There are a number of areas of concern with regard to this cancer: We need to determine the true prevalence of RMC. Because we lack national health policy that reinforces education about sickle cell trait, many patients do not know their status, or their risk. Without standard screening tests, early detection is almost impossible. There has never been research funding for RMC, so treatment options are limited. Furthermore, most physicians are not familiar with the disease and lack knowledge to deal with this cancer effectively. When patients are able to reach doctors that have RMC expertise, they are usually out of state and many insurance plans will not allow their patients to leave the state of residence, even if there are no local options. This is particularly true for Medicaid covered children and young adults. As a result, many people are denied the option to receive expert care. We have assembled a multidisciplinary focus group, initially through support from The William Guy Forbeck Research Foundation, with physicians, scientists, and lay participant advocates from across the United States, Europe and the Middle East. The goal of this focus group is to begin to raise awareness and to elevate the research for RMC. We are appealing to the National Institutes of Health (NIH) to promote renal medullary carcinoma research, awareness and disease intervention initiatives across the United States. We need to educate the public, as well as health care providers, about sickle cell trait and renal medullary carcinoma. We also need to launch a screening program and create a registry for this disease in order for health care providers to work collaboratively, nationally and internationally, to treat this disease and bridge the gap that currently exists in meeting the health care needs of the individuals suffering from this disease. Thank you for your time and consideration. Respectfully, Cora Connor
Help Paralyzed Woman Receive All Benefits to Keep Independence
I was 7 years old when I was paralyzed in a car accident. Through recovery and rehab, I fought and continue to fight to lead a normal, independent life, pursuing the same life goals any young woman wants; graduate, go to college, find love, marry, buy a home, have a family and have a career. Nine years ago I had no option but to undergo several risky operations that failed, which left me in a much worse situation. I deal daily with chronic pain, a surgical opening, and surgical hardware exposed. I am in a painful and risky situation that makes it difficult to have any kind of quality life and prevents me from working like I did before the surgeries. However, through it all, I persist to not lose hope or my independence, continuing to live on my own and fight to be the productive member of society I strive to be. I graduated with great grades, worked, paid my own way through college, but my savings quickly diminished, making me unable to complete my degree and SSI not enough to pay the bills. I still only have SSI as an income and it's not enough, I take out of my savings every month to pay living expenses. I soon won't have savings to keep renting or to buy a home; the hope I had for my savings to go towards. And until my doctors can form the best surgical plan, my only option to work would be from home. With this limitation, it's hard to find a trustworthy and well paying job. SSI also retracts from my already unsubstantial check when I make a certain amount of money working. I'm asking for your signature to plea with my government officials to help inform me of all programs and benefits I qualify for that would help me financially, and help me to enroll for such benefits. This will get me to a place in my life where I can provide for myself, be able to afford my home, car and education. I don't want to just collect a check, live off of Social Security. I'm not asking for handouts, just help from every avenue I qualify for that get me on the best path to a better income to and the life I've fought for. I need benefits to help pay for my care as well; I don't want to end up in a care facility, my health worsen, or give up on my dreams after all my hard work. Please help me have a voice to those who can make a difference, who can direct me to assistance, programs and fiannces, providing me enough of an income to live independently with my disability and it's restrictions. Everyone deserves independence. Please help me get the income that saves me mine. Thank you.
Tripp Rabon's Law
South Carolina roads are literally killing people. No more meetings, audits, reports, or studies—it’s time to take action. No matter where you live, will you please join us in our fight for justice and safety for all? A quick visit to the official South Carolina Tourism website paints a picture perfect image of South Carolina. The simple slogan, “South Carolina—Just Right” is displayed prominently in the upper left hand corner of the website for all visitors to clearly see. What isn’t “Just Right” about South Carolina, however, is the condition of many roads across the state. On December 23, 2015, Glenn Forrest Rabon, Jr., better known as Tripp, was killed suddenly in a car accident ultimately caused by a flooded roadway on Highway 64 (SR 64) in Colleton County. The condition of the road was known and reported on multiple occasions, yet neglected countless times by the South Carolina Department of Transportation (SCDOT). Tripp was a senior in high school. He was an honor student and athlete with plans to attend Clemson University in the fall of 2016; but above all, he was a beloved son, brother, and a friend to all he encountered. His time on Earth was cut short due to no fault of his own—only the hazardous conditions of the South Carolina roads were to blame. Sadly, South Carolina is among the top 5 states in the nation for car crash fatalities due to unsafe conditions on the road. In fact, the National Highway Traffic Safety Administration recently released a report (July 2016) illustrating that traffic deaths in 2015 were at an all-time high—a shocking 7.7 percent nationwide. Furthermore, there were 154 more fatal car crashes in 2015 than there were in 2014; that’s 977 fatalities total. Let that sink in for a moment—977 car crash fatalities in 2015. That’s an increase of 16 percent, or in other words, a fact that shows driving has proved to be almost twice as deadly for South Carolina drivers as opposed to drivers throughout the rest of the country. Interestingly, SCDOT is currently advertising and advocating for “a vision to zero traffic fatalities”, echoing the idea that “the road to zero starts with you [the driver]”. While safe driving is a responsibility that should be respected and practiced by all participants, the “Target Zero” safety initiative fails to address what the driver cannot control—the physical condition of the road itself. But together, as one voice, we can change this unsettling fact. Fatal traffic accidents, like the one that took Tripp’s precious life, can realistically be avoided. The goal of this movement is to enact legislation to implement a way to prioritize projects that promote transportation safety across the state. It is notable that only months ago (September 2016), the SCDOT Commissioners approved $23,000,000 to be used for beautification projects across the state instead of allotting the money to roadways in dire need of repair. It is the hope of Tripp’s family and friends that passing TRIPP’s Law will ultimately make South Carolina safer, and thus, save the lives of others before it is too late. TRIPP’s Law will require SCDOT to make use of advanced technology to create an online, up-to-the-minute-report, which will utilize both public and government input of reported, unsafe road conditions. The law will require a prioritized repair report called, TRIPP’s Report, which similarly will use past and present road conditions. It will likewise include recent repairs (completed or pending) and show statistics (such as accidents, fatalities, 911 calls, public repair requests, etc.) in real time. Anyone that knew Tripp would say, without a shadow of a doubt, Tripp was put on this Earth to make the lives of others better. Please help us continue to promote Tripp’s legacy of kindness and his willingness to help others by both signing and sharing this petition to protect and inform drivers who travel in South Carolina about crash and repair reports for SC roadways. Together, we can come together to advocate for safer South Carolina roadways so we can save lives! Anyone who is willing and feels he or she would be of substantial help to the cause, TRIPP’s Law, is encouraged to contact Tripp’s sister, Emily, at TrippRabonsLaw@gmail.com These facts and more can be found on the following websites: http://counton2.com/investigative-story/news-2-i-team-new-details-uncovered-in-death-of-shs-teen/ http://www.nhtsa.gov/Data http://www.thestate.com/news/local/crime/article89560862.html http://www.dot.state.sc.us/inside/internal_auditor/reports.aspx
Senator Tim Scott and Senator Lindsey Graham Town Hall Meeting Request
Constituents of Tim Scott and Lindsey Graham would like to request a town hall meeting to discuss a variety of issues including: - Repeal/replacement of the Affordable Care Act -National Security Council - Pursuing sanctions against Russia for election interference -EPA and preservation of current federal park lands and forests - Gun control -Senator Scott's and Senator Graham's logic and argument for affirming controversial cabinet appointment Betsy DeVos as Secretary of Education and Jeff Sessions as Attorney General. A town hall meeting would give you the opportunity to communicate with your constituents in larger numbers, and would grant us the opportunity to clearly understand your positions and to voice our own concerns. We would like to schedule this meeting as soon as possible. Thank you, Residents of South Carolina