Petition to Flemming Ornskov, Howard Mayer
Grant compassionate use of experimental therapy for a life-threatening childhood disease
Our 2 year old daughter, Radha Rangarajan, was diagnosed with late-infantile metachromatic leukodystrophy on April 13th, 2018. Without treatment, Radha will experience a rapid neurological decline over the next couple of months resulting in incapacitation, leaving her non-verbal, blind, and prone to seizures. The disease then plateaus leaving her in a vegetative state for several years, with most children not surviving past their 8th birthday. There are no available treatment options and Radha is not eligible for any clinical trials. Shire Pharmaceuticals has developed an enzyme replacement therapy, SHP611 (also known as HGT-1110), which has undergone early testing with promising results. Our requests for compassionate use of the medication have been denied by Shire despite this being her only chance at life. Radha's condition continues to worsen every day and by the time Shire's proposed follow up trial begins enrolling patients it will be too late for her as the disease will have progressed too far. We respectfully request that Shire Pharmaceuticals grants compassionate use of this enzyme therapy for our sweet little girl. Her life depends on it. Please sign this petition to show your support for compassionate use of SHP611/HGT-1110 for Radha Rangarajan. Thank you.
Petition to New York State Senate, New York State House, New York Governor, Andrew Cuomo
URGENT - INCLUDE MENSTRUAL HEALTH IN SCHOOL CURRICULUM - #LetsTalkPeriod
WE NEED YOUR SIGNATURE BY JUNE 19, 2018! Senator Sue Serino (R, C, I—Hyde Park) and Assemblymember Linda Rosenthal (D/WF—Manhattan), the bill sponsors responsible for successfully repealing the infamous "Tampon Tax," have teamed up again to help educate school-aged young women about their menstrual health. Support bill S. 8543/A. 10763 requiring the New York Commissioners of Health and Education to develop age-appropriate educational materials for endometriosis, and other menstrual disorders, to be made available to school districts and health care practitioners across NY State. The goal of the bill is to raise awareness about these conditions to ensure that young women have the information they need to effectively advocate for their personal health. Given the seriousness of this disease, and the stigma often associated with discussing menstrual health, it is critical that the state makes an effort to educate young women on this important issue. New York State is taking the lead with this legislation so that all states follow suit to include the same educational materials in their school curriculums! Sign and Share https://www.endofound.org/letstalkperiod
Petition to Charles Shumer, Kirsten Gillibrand, Jose Serrano, Joseph Crowley, Andrew Cuomo
Immediate Public Notification of Legionella Exposure
This petition is for immediate notification to the public of potential legionella exposure. This is to include not only notification of the outbreak, but full transparency and disclosure of all building locations and addresses that test positive for legionella bacteria. Positive testing comes back immediately and the city of New York is not doing enough to notify the public of these locations. New York City is leading the country in cases of Legionnaires with a 67% increase in reported cases in 2017. This does not include unreported cases, as the story listed below. Those with compromised lung health are at a much greater risk to fall ill and even face death - those with asthma, elderly, young people...anyone with a compromised immune system is at risk. Please see why this petition is a personal mission. My husband Kevin was diagnosed w lung cancer at 46. He had two young children and we were a loving family. He didn’t smoke. He had no signs of cancer. We were shell shocked - devastated. But Kevin was ready to fight. And that is what he did. But Kevin did not even get a year. Kevin didn’t die from lung cancer - he was being treated for that. We were not naive to think he had twenty years but we certainly did not think he had 10 months...not us, not his doctors or nurses. No one thought it would be less than a year. Legionnaires pneumonia killed Kevin. Legionella bacteria is highly preventable. It is spread through contaminated water. Kevin was exposed to it in New York City. In New York, where he was supposed to be safe and getting treatment for lung cancer. Where he was spending hours fighting for his life, for his family. Kevin was exposed in Lenox Hill where there are hundreds of medical facilities, hospitals and clinics. During the outbreak of 2017 they tested 40 plus buildings - 24 came back positive for legionella - but the Health Department and CDC will not release the addresses of these buildings. They will not tell the public where this occurred. All this as New York continues to lead the country in cases of legionnaires disease. “NYC is the most aggressive in following up on all legionella cases reported to us and we try to obtain exposure history for all our cases," Christopher R. Miller, the press secretary for the city Department of Health, said in an email. But this is not the case for my family, DOHMH and CDC have not reported on my husband’s death. They will not release the reporting or testing that was done. I am left to wonder how many other fatalities are going unreported. How many other cancer patients were exposed to this. Did the health department follow up on the multiple locations Kevin had visited during that time? Did they notify all the other patients seeking chemotherapy, surgery, scans and health care that they were at risk of this? How many other people died from this outbreak? Those running New York have not advised how they will remedy this for the future. This has been downplayed on numerous occasions - telling the public - this is not an epidemic, only those with compromised immune symptoms are at risk...as if that makes it ok. There have been multiple outbreaks of legionnaires in the past nine months after losing Kevin. More people have died and the next outbreak will kill more people. In 2015, 12 people were killed in the Bronx with more than 120 sickened...a few weeks ago another death. As one leading doctor in Washington put it to me - “This is going to become the norm not the exception.” My family still has no answers. So today I am advocating to prevent this from happening again. To bring awareness that we as a country, as people living and working in New York, need to do more to protect ourselves. We must demand full transparency and disclosure in anything that puts us at risk. We must call on our government to be honest and give timely and exact locations of all legionnaires bacteria and outbreaks. New York City must focus on clean air, clean water and not take it lightly that we are still being exposed to dirty water and toxins in our environment. I am here to try my hardest to prevent this from ever happening to another family.Thank you for hearing Kevin’s story.#AADCH2018 Allergy & Asthma Network #legionnaires #cleanwater #tonyawinders
Petition to U.S. House of Representatives, U.S. Senate, Donald Trump
Help Sick and Dying Coal Miners
Black lung is a devastating disease where coal dust gets embedded into the respiratory system, and coats lungs with black particles that make it nearly impossible to breathe. In the last 50 years, more than 75,000 people have died from black lung, and new reports show that the disease is resurging among American miners and those living around coal mines -- making it deadlier than ever before. But even though this incurable disease is on the rise, if Congress doesn't act this year, a federal black lung trust fund to help sick and dying coal miners suffering from the disease could be financially paralyzed. The fund could face billions in deficit, potentially forcing thousands of people with black lung to go without needed care. Demand Congress focus on this issue, and keep the solvency of the black lung trust fund intact. The fund is supported by a $1.10 per ton tax on underground coal production, and provides medical and living expenses for those miners afflicted with black lung. The fund helps provide resources for miners, many of whom don't get the benefits they were promised by coal companies that have either gone bankrupt or which have failed to provide adequate insurance. There was bipartisan legislation considered earlier this year to keep the fund going at its current level, but coal industry lobbyists pushed Congress to drop the issue. But with black lung on the rise and devastating more families and workers, why would the federal government let this fund spiral toward death? Help push members of Congress to do right by thousands of coal miners suffering from black lung or who will contract black lung.
Petition to U.S. House of Representatives
Health Coaches: Be a Part of a Real Healthcare System
We all know the problem, trillions are spent on "healthcare" yet we're sicker than ever before. We need a game changer, a disrupter, a new type of leader. Shifting people from unhealthy routines to sustainable, health and happiness promoting habits brings lasting wellness and lower healthcare costs. The current system is not sustainable and Health Coaches will work alongside our allies to fix our healthcare crisis. But we can’t do it alone. HEALTH COACHES - we need you to take action! New drugs and expensive, invasive and dangerous interventions are not going to lift us out of the mess we're in. The movement embracing a holistic approach with food and lifestyle changes is the new prescription of choice. Tell Congress to support Health Coaches and the legislation that encourages their participation into a real Healthcare system (H.Res 733, H.R.1175, H.R.1072, S.403, S.222). Sign the petition here to have the letter below sent directly to your members of Congress to show your support and be sure to contribute to the fundraiser.
Petition to Home Depot
Home Depot: Stop selling deadly paint strippers
No family should lose a loved one because of deadly chemicals. But more than 60 families across the U.S. have lost loved ones to a dangerous chemical called methylene chloride. It’s found in paint strippers on the shelves of The Home Depot and other stores. Exposure can kill within minutes. Long-term exposure to methylene chloride has been linked to liver toxicity, liver cancer, and lung cancer. And another common paint stripper chemical called N-methylpyrrolidone (NMP) can have dangerous effects if women of childbearing age or pregnant women use it. The Environmental Protection Administration (EPA) has warned that just one day of exposure to NMP can cause miscarriage or fetal death. NMP is also linked to decreased birth weight and other fetal developmental effects. Last January, the EPA proposed banning methylene chloride and NMP in paint strippers, but the agency has yet to act. Since then, at least four more people have died from using paint strippers with methylene chloride. They left behind mothers, fathers, brothers, sisters, friends. This May, after more than 200,000 people signed petitions like this one to Lowe’s, that company committed to stop selling paint strippers with these dangerous chemicals by the end of 2018. But Lowe’s top competitor The Home Depot is still refusing to act. There’s just no good reason for retailers like The Home Depot to continue selling products containing these chemicals — especially when safer alternatives are readily available. If you agree that home improvement stores shouldn’t sell dangerous chemicals, please join us in calling on The Home Depot to ban the sale of toxic paint strippers now.
Petition to Charles Rivkin, John Fithian
Make tomorrow's kid-rated movies smokefree and save one million lives
#RateSmokingR Why do so many kids still start to smoke? America removed cigarette commercials from TV and radio nearly fifty years ago. But kid-rated movies — especially PG-13 movies — still push smoking at children and teens. In 2017, half of PG-13 movies featured smoking, the highest level in years. Smoking in movies kills in real life. Smoking on screen will recruit six million American kids to smoke in this generation. Two million of those kids will die from cancer and other diseases caused by smoking. Parents and health advocates demand a reasonable solution to this urgent problem. America's #1 killer deserves the R-rating. R-rating future movies with smoking will keep smoking OUT of movies rated G, PG and PG-13 — the movies that kids see most — and cut young audiences' deadly risk in half. The CDC says the R-rating will save one million kids from tobacco addiction, America's #1 cause of preventable death. Film producers will still be able to include smoking in any movie they want, accepting an R-rating just as they routinely do for other content. Why won't Hollywood act? The major movie studios and movie theater chains run the film ratings. They know the harm done by onscreen smoking. Their leaders could update the R-rating tomorrow but, so far, they've refused. The tobacco industry, far richer than Hollywood, has a long history of exploiting movies to sell smoking, using paid product placement and other tactics. Movies are the last media channel pushing tobacco at kids, completely unrestricted. When it comes to life and death, Hollywood must follow a simple rule: One little letter "R" will save one million lives. Learn more…and educate others:• Smokefree Movies (University of California, San Francisco) • U.S. Centers for Disease Control and Prevention (CDC fact sheet)
Petition to U.S. House of Representatives, Paul Ryan, Nancy Pelosi
Support legislation to keep dialysis patients insured. Tell Congress to pass H. R. 3976.
Low-income Americans with high-cost chronic conditions, like kidney disease, often require charitable assistance to pay for their health insurance premiums. But some insurance companies are refusing to accept payments from non-profit organizations. This puts low-income and financially struggling patients at risk of losing their insurance. Patient advocates for the American Kidney Fund started a petition to help address this crisis. We are fighting to ensure that all kidney dialysis patients can maintain access to their life-saving treatment. The Access To Marketplace Insurance Act would do just that, and we are calling on Congress to pass it into law. The Access to Marketplace Insurance Act, was introduced in the House of Representatives last October. The bill would require insurance companies to accept payments from nonprofit organizations like the American Kidney Fund that serve people who are living with serious health conditions and need charitable assistance to stay insured. Now Congress must take the next step and pass this legislation to ensure that ALL low-income Americans living with chronic conditions can keep their insurance and get the care they need. Please sign and share this petition calling on Congress to vote on this vital legislation right away.