Petition to Biogen Idec, Michel Vounatsos, Biogen
Without Spinraza, Zahra will die
By signing this petition, you are literally saving Zahra’s life. Zahra, a 6 years old girl, has been diagnosed with a rare disease called Spinal Muscular Atrophy ("SMA"), which is a terminal, degenerative disease, that takes away a child’s ability to walk, stand, sit, eat, breathe, and even swallow. HOWEVER, a new medication, SPINRAZA™ (nusinersen), not only can stop the disease, it will restore the previous degeneration. Unfortunately, Spinraza is VERY expensive, costing $750,000 USD! Zahra's story published on the Wall Street Journal: https://on.wsj.com/2FMo3PA All you have to do in order to help Zahra is to simply sign this petition requesting Biogen, the company which makes SPINRAZA™, to ease Zahra's access to this medication by either reducing the price or any other way possible to save her life. Please follow Zahra on Twitter: https://twitter.com/SaveZahraD #SaveZahra Dear Biogen company, please gift Zahra the compassionate use of SPINRAZA™ (nusinersen) or at lower prices before it is too late. Please support Zahra's family so that this little girl can start her treatment as soon as possible. No kid in this world deserves to be left to gradually or eventually die. Please help saving Zahra's life.
Petition to Organ Procurement and Transplantation Network (OPTN)
An Open Letter to the Community
Photo caption: Meet Marlee, from Waco, Texas. She has been on the US transplant waiting list since February 2019. This petition is a companion to the printable open letter to the community. Children are the world’s most valuable resource and its best hope for the future. -John F. Kennedy In the US, children die waiting for liver transplants.1 in 10 infants and 1 in 20 children who are awaiting liver transplant in the United States die on the waitlist.(1) More than 10 years ago, pediatric advocates started calling upon the United Network for Organ Sharing (UNOS), which operates the national Organ Procurement and Transplantation Network (OPTN), to address the preventable deaths of these children.(2) The current system deprioritizes children.Children are not given the chance to compete against adults for livers because the calculation we use to decide their place in line for a liver significantly underestimates their risk of death.(3) To make matters worse, although there are enough pediatric donor livers to transplant all children in this country who need liver transplants, current OPTN policy dictates that these pediatric livers first be offered to adults locally rather than to sicker, more critically ill children nationally.(4) Adults get livers from children, rather than the other way around.In a five-year period where 316 children died waiting for a liver, more than 1,500 adults were transplanted with a liver that came from a child.(4) Almost half of all livers from children are transplanted into adults; nearly 25% of these livers given to adults were never offered to a child.(5) The global standard of care is to put children at the front of the line.With the exception of the United States, most liver transplant systems in the world (United Kingdom, EuroTransplant, Canada, Argentina) definitively prioritize liver allocation to children, without detriment to adult recipients.(6) We could prioritize children awaiting liver transplant in the US without impact to adults.Modeling shows that prioritizing national sharing of pediatric donor livers for children would significantly decrease mortality for infants and children on the waitlist without significant change for adults.(7) Allocating to children first on the waitlist has the added benefit of increasing the likelihood of splitting a liver, allowing two patients to benefit from one organ.(8) In 2018, after more than a decade of advocating for change, during which time more than 500 children died, the OPTN Board of Directors passed a new US liver distribution policy.This new policy was the product of several years of collaboration and input from constituents across the spectrum of US transplantation. With support from across the liver transplant community, the OPTN Liver and Intestinal Transplantation Committee added changes in allocation that finally allowed for children to be prioritized for pediatric livers. This changes everything for children waiting for a liver transplant; all deceased donor pediatric livers are offered to every single child in the country before being offered to less critically ill adults. The new policy does not affect access to exception points; after being assigned scores, programs that care for children retain the ability to request any additional points they feel their patients need, and these requests will be reviewed and approved by a panel of national pediatric liver experts. Although some aspects of the policy remain controversial, most stakeholders agreed that it was a step forward, particularly with regards to children. In 2019, a suit on behalf of several individual transplant programs and adult candidates awaiting liver transplantation was filed asserting that the approved 2018 policy would disadvantage patients in their specific geographic area, although no reference was made to the plight of children. Changes went into place on May 14th, 2019. Within 72 hours of implementation, OPTN was been ordered by the federal court to reprogram the old system. After more than ten years of waiting, the positive change for the pediatric liver waitlist was quickly undone—in the interest of adults, with little to no thought for its impact upon children. What can you do? The OPTN pediatric liver priority policy passed in December 2018 was a step forward. You can support re-instituting this policy by raising awareness of the unintended consequences to children that would occur if we revert permanently to the prior policy without protecting this independent clause. Sign this letter and share it widely; reach out to your elected representatives and let them know that this is an issue that is important to you. We cannot wait another ten years and lose the lives of another 500 children. We have a solution to this problem– and our children deserve it. If you support our effort and sentiment, you can co-sign this petition yourself here at Change.org. If you are connected to transplant, please indicate your affiliation. Otherwise, any support is welcome. References (as part of the full letter) are available at this link. Signed: Society for Pediatric Liver Transplantation (SPLIT) Executive Committee Melissa McQueen, Pediatric Recipient ParentExecutive DirectorTransplant FamiliesStarzl Network for Excellence in Pediatric Transplantation Jen Lau (Pediatric Liver Recipient Parent) & LeadershipSPLIT Patient and Family Engaged Partners (PFEP) Jasmine HollingsworthPediatric Liver Recipient ParentFounder & Board of DirectorsLiver Mommas, Inc. David DavenportExecutive DirectorTransplants for Children Joseph P. HillenburgPediatric Recipient Parent/Advocate Alyssa HernandezPediatric Liver Recipient ParentRegional Coordinator, NorCal ChapterTransplant Families Chris Klug Foundation Rick LofgrenPresidentChildren’s Organ Transplant Association Michelle GilchristCEONational Foundation for Transplants Pediatric Community of PracticeAmerican Society of TransplantationNorth American Society of Pediatric Gastroenterology, Hepatology and Nutrition George V. Mazariegos, MDDirector of Pediatric TransplantationHillman Center for Pediatric TransplantationChildren’s Hospital of Pittsburgh Evelyn K. Hsu, MDMedical Director, Liver Transplant ProgramSeattle Children’s Hospital Simon Horslen, MB ChBMedical Director, Solid Organ TransplantationSeattle Children’s Hospital Nadia Ovchinsky, MD, MBADirector, Pediatric HepatologyMedical Director, Pediatric Liver TransplantChildren’s Hospital at Montefiore Siragusa Transplantation CenterAnn & Robert H. Lurie Children’s Hospital of ChicagoDouglas Mogul, MD, MPHMedical DirectorPediatric Liver TransplantationJohns Hopkins University School of MedicineJohn Bucuvalas, MDChief of the Division of Hepatology Department of PediatricsMount Sinai Kravis Children's HospitalFellow, AASLD, Fellow, ASTPast Chair, SPLITRonen Arnon, MD, MHAProfessor of PediatricsMedical DirectorPediatric Hepatology and Liver TransplantationMount Sinai Medical Center Katryn FuruyaMedical Director of the Pediatric Liver Transplant ProgramMayo Clinic Children’s Center Samar Ibrahim, MB ChBConsultant, Division of Pediatric Gastroenterology & HepatologyAssistant Professor of PediatricsMayo Clinic Children’s Center Julie K. Heimbach, MDSurgical Director, Liver TransplantationMayo Clinic Emily Perito, MDAssistant Professor, PediatricsUCSF Benioff Children's Hospital Sue Rhee, MDDivision Chief, Pediatric Gastroenterology, Hepatology and NutritionUCSF Benioff Children's Hospital Sang-Mo Kang, MDAssociate Professor, Department of SurgeryUCSF Transplant and Transplant Surgery John Roberts, MDProfessor of SurgeryUCSF Transplant and Transplant Surgery Ryo Hirose, MDProfessor of Clinical SurgeryUCSF Transplant and Transplant Surgery Pamela Valentino, MD, MSc, FRCP(C)Assistant Professor of PediatricsYale-New Haven Transplantation Center Ramesh K. Batra, MD, MBBS, MA, FRCSAssistant Professor of Surgery (Transplant)Yale-New Haven Transplantation Center Kathleen M. Campbell, MDDivision of Pediatric Gastroenterology, Hepatology & NutritionMedical Director, A4N Transplant & Surgery UnitCincinnati Children’s Hospital Medical Center Jaimie D. Nathan, MD, FACSAssociate Professor of Surgery and PediatricsAssociate Surgical Director, Liver Transplant ProgramDivision of Pediatric General & Thoracic SurgeryCincinnati Children’s Hospital Medical Center Liver Transplant ProgramPhoenix Children’s Hospital Elizabeth B. Rand, MDMedical Director, Liver Transplant ProgramChildren’s Hospital of Philadelphia Kathleen M. Loomes, MDCo-Director, Fred and Suzanne Biesecker Pediatric Liver CenterChildren’s Hospital of Philadelphia Becky Miller, MSN, CRNPLiver Transplant CoordinatorChildren’s Hospital of Philadelphia James E. Squires MD, MSAssistant Professor of PediatricsDivision of Gastroenterology, Hepatology and NutritionChildren’s Hospital of Pittsburgh Steven J. Lobritto, MDMedical DirectorPediatric Center for Liver Disease and TransplantationNY Presbyterian Hospital - CHNY/ColumbiaNYP Morgan Stanley Children’s Hospital Mercedes Martinez, MDMedical Director, Intestinal Transplant ProgramCenter for Liver Disease and Abdominal Organ TransplantationNY Presbyterian Hospital - CHNY/ColumbiaNYP Morgan Stanley Children’s Hospital Eunice Biney-AmissahPediatric Research CoordinatorCenter for Liver Disease and TransplantationColumbia University Medical Center Daniel H. Leung, M.D., FAASLDAssociate Professor of PediatricsBaylor College of MedicineInterim Director of Hepatology and Liver Transplant MedicineTexas Children’s Hospital Julie Economides, BS, RNData Services CoordinatorTransplant ServicesTexas Children’s Hospital Melissa Nugent, BSN, RN, CCTCClinical EducatorTransplant ServicesTexas Children’s Hospital Elsie Rojas Duarte BSN, RN, CCMInterim Director, Pediatric Transplant ProgramUniversity Transplant CenterUT Health San Antonio Cecile Aguayo, MBA, BSN, RNPediatric Director of Organ Failure & Transplant Services Primary Children’s Hospital Linda Book, MD Director, Liver Disease and Transplant ProgramPrimary Children’s Hospital Carlos Esquivel, MDChief, Division of Abdominal Transplantation, Stanford University School of MedicineAssociate Director, Institute for Immunity, Transplantation and Infection, Stanford University School of MedicineDirector, Pediatric Liver Transplant Program, Stanford University School of Medicine Joshua E. Gossett, DNP, MBA, RN, FACHEAdministrative DirectorPediatric Solid Organ Transplant CenterLucile Packard Children’s Hospital Stanford Noelle Ebel, MDClinical Assistant ProfessorPediatrics – GastroenterologyLucile Packard Children’s Hospital Stanford Suzanne V. McDiarmidChief, Division of Pediatric Gastroenterology, Hepatology and NutritionUCLA Mattel Children's Hospital Ajay Kumar Jain, MD Section Head, Pediatric Nutrition, Medical Director, Pediatric Liver TransplantationDivision of Pediatric Gastroenterology, Hepatology and NutritionSSM Cardinal Glennon Children's Medical CenterSaint Louis University Nanda Kerkar, MD, FAASLDDirector, Pediatric Liver Disease and Liver Transplant ProgramGolisano Childrens Hospital Nemours/A.I. duPont Hospital for Children Shikha S. Sundaram, MD MSCI, FAASLDMedical DirectorPediatric Liver Transplant ProgramChildren's Hospital Colorado Dev M. Desai, MD, PhD, FACSChief, Pediatric TransplantationChildren’s Medical Center, Dallas George Yanni, MDAssociate Professor of Clinical PediatricsTransplant HepatologyDivision of Pediatric Gastroenterology, Hepatology & Nutrition Children's Hospital Los Angeles AdventHealth for Children Jaime Chu, MDAssistant Professor of PediatricsDivision of Pediatric HepatologyIcahn School of Medicine at Mount Sinai Manuel Rodriguez-Davalos MD FACSSurgical DirectorPediatric Liver TransplantationPrimary Children’s Hospital
Petition to Premera Blue Cross, Starbucks, Jay Inslee
Premera Blue Cross: My daughter needs this life sustaining medical device
My daughter Laurie Beth Nelson needs a "gastric neurostimulator". This medical device, implanted in the stomach, will stimulate the nerves that allow the stomach to empty. Laurie's insurance company Premera Blue Cross (via her employer Starbucks) is denying coverage for this device. The device is used to treat an incurable condition called gastroparesis, where the stomach no longer empties regularly, causing nausea, vomiting, and dehydration. Because Laurie has received a kidney-pancreas transplant, a feeding tube is not optional due to the risk of infection. There are no medications to treat this disease. The constant nausea and frequent vomiting that she experiences as a result of the gastroparesis are making it difficult for her to absorb her transplant medications that prevent rejection of her transplanted organs. Laurie has been admitted to the hospital monthly, sometimes weekly, for IV. hydration and medication that she cannot keep down due to nausea and vomiting. Premera Blue Cross helped cover the cost of her life-saving transplant, but refuses to cover this device which will keep it from failing. After all that Laurie has endured to stay alive, this is inconceivable, but true. Please demand that Premera Blue Cross pay for the gastric neurostimulator so that Laurie can continue her fight for a normal, healthy life.
Petition to New York State House, Carmen Arroyo, Andrew Garbarino, Ellen Jaffee, David Weprin, Félix W. Ortiz, Aravella Simotas
Lesandro "Junior" Guzman-Feliz Child Victim Protection Act
En Español aquí The death of 15-year-old Lesandro “Junior” Guzman-Feliz—specifically the brutal way the Bronx teen lost any chance at his survival—has since enthralled the nation’s heart. This innocent boy—someone who could have been your son, your grandson, your brother, your cousin, or nephew—was slaughtered on an unbearable display for all to watch. What can be seen from video surveillance is this: The savage acts of five gang members, dragging Junior outside of his neighborhood bodega and stabbing him multiple times with a machete and knives. What can be felt from the video is this: Pure helplessness. Junior continued his struggle for survival after his attackers fled the scene. He yelled to neighbors and onlookers to “dial 911.” Perhaps an unfortunate sign of the times, no one used their phones to call for help, but instead, recorded the scene to post on various social media platforms. Realizing he would not receive the assistance he so desperately needed, Junior struggled through his final moments alone. His strength allowed him to run nearly three blocks towards St. Barnabas hospital where, sadly, he arrived too late and took his last breath on the sidewalk outside of the emergency room doors. When tragedies occur, people often wonder what could have gone differently. Grieving family members and friends struggle with the idea that their loved one would still be alive if the events were altered, even slightly. This is not the case here. Junior’s life could not have been saved. Junior’s live should have been saved. Junior would still be alive if the people around him undertook a minimum degree of civic duty to protect the life of a dying child. Unfortunately, there is no legal “duty to act” in situations like these. Under New York law, the passersby who spectated, recorded, and posted Junior’s death have not committed any crime. By virtue of legislation, we can create a meaningful way to honor Junior’s legacy so that children like him are never abandoned by their communities again. By sharing responsibility for public safety, the citizens of New York need to collectively call upon state lawmakers to enact legislation that would create a legal “duty to act” upon any person, who reasonably believes that a child(ren), under the age of 16, is exposed to, or has suffered, grave physical harm. These witnesses shall be required to immediately report the incident to authorities or assist the victim, under reasonable and safe circumstances. This proposed legislation, the “Lesandro ‘Junior’ Guzman-Feliz Child Victim Protection Act,” will impose criminal and civil sanctions against any person, who fails to notify authorities, in situations like the ones highlighted above. Similar laws creating a “duty to act” have been enacted in California, Hawaii, Massachusetts, Minnesota, New Mexico, Ohio, Rhode Island, Vermont, Washington, and Wisconsin. Junior fought for his life. For several long minutes he sought help from members of his community—some who have known him for his entire life—to which not one person acted. They failed Junior. We all failed Junior. Let us make sure we don’t fail him again. Junior’s life shall not be lost in vain. We need 100,000 signatures to initiate a change.
Petition to City of Hendersonville, mayor of Hendersonville
Hendersonville A Splashpad Already Please
Hello friends and families in WNC, specifically Hendersonville and Henderson County. We are in desperate need for a local community splashpad. There are some beautiful spacious parks but no where for the community’s little ones to cool off in the hot summer. This petition is to show the greater concern, need, and desire to have a splashpad built in Hendersonville, NC.
Petition to Netflix
Put "Boy Meets World" on Netflix
People spanning generations have grown up laughing along with the cast and characters of "Boy Meets World", and while it still airs on TV, the long-loved show should be available in a mainstream way for future generations to enjoy the same way we did.
Petition to Target CEO Brian Cornell
TARGET: Improve your paid parental leave policy
I’m a super busy mom and have always chosen to shop at Target because I thought its policies towards employees were more humane than Walmart. But I just learned Target is worse than Walmart -- it only offers two weeks paid parental leave plus some short-term disability for people who give birth! Leaving my tiny two-week-old baby would be extremely painful, and yet 1 in 4 women in this country have to go back to work within 2 weeks of giving birth because of inadequate policies like Target's. When I gave birth to my son Oliver, I only had six weeks of paid parental leave, barely enough time to recover from my C-section. I can't imagine what it would have been like if me or my husband would have had to leave him after just two weeks. So when I see Target employees stocking shelves, working the check-out line or answering questions I can’t help but wonder whether they’ve got a tiny baby at home who they can’t be with. I believe being there and providing for those you love isn’t negotiable. That’s why I’d love for you to join me in calling on Target to provide 12 weeks fully paid parental leave to ALL employees. Petition text To: Target CEO Brian Cornell As one of the largest employers in the U.S. your family leave policies have an enormous impact on the lives of working families. Right now Target is failing to live up to its image as one of America’s favorite family brands, but you’ve got a clear opportunity to close that gap by expanding Target’s paid parental leave policy for ALL of its employees to 12 weeks fully paid. As Walmart recently showed there is a huge opportunity to provide employees the leave they need, and employers who don’t keep up will lose out in the race for talent.
Petition to Google, Inc, Apple
Add AED locations to Google Maps and Apple Maps as a searchable feature to save lives.
THE PROBLEM Within two seconds, with your cell phone, you can find the closest Starbucks, including directions, maps, pictures and more. But if someone collapses from a Sudden Cardiac Arrest, and when every second counts, why can't I use the same technology to find where the closest Automated External Defibrillator (AED) is located? Google My Business listings will tell you if a location has WiFi, Free Parking, Handicap Access, and much more. Why can't an AED be on that list? If I am in a shopping area and someone collapses, I should be able to ask Google or Siri and instantly know the location of the closest AED. This feature has the potential to save thousands of lives, and over time, tens of thousands of lives, or more. (UPDATE: Here's a news story about our petition that aired last night.) THE SOLUTION How do we make this happen? Is it Bob on the 7th floor in the Maps Department? Is it legislative? Is it public pressure? As I start this, I have no idea and need help with guidance and ideas. HOW CAN YOU HELP If you have any insight or ideas on how to make this happen, please connect with us directly. If you agree with this initiative, please: Sign up to keep in the loop Post this campaign on your social media pages WHY IS THIS MY MISSION? This is my mission because my wife Julie, had a cardiac arrest. When she collapsed, she was not breathing and her heart was not beating. Within 45 seconds of her collapse, she was receiving CPR. Within 2 minutes, she got a shock from an AED, followed up by a second shock. Three minutes after her collapse, the ambulance arrived. By that time, she already started breathing and her heart started beating again. Today she has fully recovered because of the quick actions of those around her and because of the AED. Watch this video for Julie's story. This technology has the potential to save thousands of lives, if not tens of thousands of lives over time. SUDDEN CARDIAC ARREST STATISTICS Sudden cardiac arrest (SCA) is a leading cause of death in the United States, killing nearly 300,000 every year. SCA can strike persons of any age, gender, race and health. An automated external defibrillator (AED) is a device used to administer an electric shock and restore the heart's normal rhythm. The survival rate for SCA is less than 5%. This is due to limited AED accessibility. If an SCA victim receives defibrillation through an AED within the first minute, the survival rate is 90%. For every minute that passes without defibrillation, survival decreases by 7 - 10%. 30% - 50% of SCA victims would survive if AEDs were used within five minutes. If defibrillation is delayed by more than ten minutes, the survival rate is less than 5%.