disease research

10 petitions

Update posted 3 months ago

Petition to John Burlow (Nationa Institues of Health), Jenni Glenn Gingery, Sean Tipton, Mary Green, Dr. Anuja Dokras, Dr. Barbara Levy, Jeremy Lazarus, Kristen Long, Kevin Griffis, Polly Webster

Recognize #PCOS Polycystic Ovary Syndrome as a significant health concern demanding national attention and government support.

Up to 20% or 2 in 10 women and girls worldwide have polycystic ovary syndrome (PCOS), a complex hormonal disorder for which there is no cure. While the name may be deceiving, PCOS is not a gynecological issues it is an endocrine disorder affeting many systems in the body. If left untreated PCOS can be a precursor to many life threatening conditions including type II diabetes, hypertension, cardiovascular disease, stroke and kidney problems. This means PCOS contributes to some of the leading causes of death and disability in women today. For many diagnosed with PCOS, Awareness and education have played a key role in helping them learn to live and deal with Polycystic Ovary Syndrome and ultimately live a healthier life. That is why PCOS Awareness has to happen now to ensure women and girls do not have to go through another day, month or year of silent suffering and to ensure they are educated on how to live a healthier life with this syndrome. What PCOS is, and what it does to women who have it, is complicated to explain as symptoms and severity of the syndrome can vary from person to person. Some of the classic symptoms are drastic weight gain, hair loss, depression, fatigue, thyroid problems, high cholesterol, panic attacks, headaches, dizzy spells, poor memory or muddled mind, sleeping disorders, constant thirst, extreme cravings, insulin resistance, cystic acne, cystic ovaries, menstrual cycles without ovulation, irregular cycles, severe mood swings, high testosterone levels, infertility problems, excess facial and body hair, not to mention a seven times greater risk than an average woman for four major health concerns affecting women in the United States today including heart disease, diabetes, endometrial cancer and stroke. Because PCOS can cause so many physical and emotional complications, it is important for early detection, treatment and support. Chrisy Wise of Georgia agrees, "I started showing signs at a very young age and went undiagnosed for many years. As a young girl, it was very hard when doctor after doctor kept telling me nothing was wrong. Now, I know all the symptoms together equal pcos." This petition is not only raising awareness and gaining support, it is giving women, their families and supporters of PCOS awareness a voice, a strong voice that will hopefully inspire and invoke change for better health, treatment and support of this syndrome.

Ashley Levinson
13,561 supporters
Update posted 3 months ago

Petition to Susan Martin, Bob Steinburg, Beverly Boswell, Howard Hunter, Shelly Willingham, Michael Wray, Michael Speciale, Gregory Murphy, George Graham, John Bell, Pat McElraft, Jean Farmer-Butterfield, Jimmy Dixon, Larry Bell, William Brisson, John Szoka, Charles Graham, Ken Goodman, Garland Pierce, James Boles, John Sauls, Robert Reives, Verla Insko, MaryAnn Black, Larry Yarborough, Bert Jones, Jon Hardister, Pricey Harrison, John Faircloth, Kyle Hall, Debra Conrad, Sam Watford, Allen McNeill, Justin Burr, Mark Brody, Rodney Moore, John Bradford, Sarah Stevens, Lee Zachary, Rena Turner, Dean Arp, Mary Belk, Linda Johnson, Harry Warren, Julia Howard, Jeffrey Elmore, Dana Bumgardner, Kelly Hastings, Jason Saine, Mitchell Setzer, Chaz Beasley, Tim Moore, David Rogers, Hugh Blackwell, Destin Hall, Jonathan Jordan, Josh Dobson, John Ager, Chuck McGrady, Cody Henson, Brian Turner, Michele Presnell, Mike Clampitt, Kevin Corbin, Jay Adams, John Fraley, Scott Stone, Andy Dulin, Shirley Randleman, Ronald Rabin, DON DAVIS, Jeff Tarte, Carla Cunningham, Kelly Alexander, John Torbett, William Brawley, Becky Carney, Susan Fisher, Beverly Earle, John Autry, Larry Pittman, Larry Potts

Newborn Screening for Krabbe disease in North Carolina

   Our son, Thomas, was born on September 21, 2015. In February 2016, 5 months later, Thomas was diagnosed with a fatal disease known as Krabbe disease. On Wednesday July 12, 2017, our son Thomas passed away due to the progression of this disease. Our hearts are broken. At first, Thomas seemed to be a "normal" baby, smiling, looking at us, flaring his hands and feet around, you know, what a normal baby does. As time went on, we knew Thomas was not a "normal" baby. He would cry inconsolably. We were told that Thomas was "colicky" and it would eventually pass. Well...It didn't pass. Thinking Thomas had reflux, he was put on Similac Alimentum. His crying persisted. Thomas was not meeting his milestones: holding his head up, rolling over and holding himself up. He also quit eating and was losing weight. We took him to the pediatrician and he was admitted into the hospital. During this weeklong hospital stay, Thomas was put through so much for a 3 month old. It was hard to see my little son getting a NG tube shoved down his nose so he could eat, IV placed in his little hand, blood being taken from his little arm and nurses and doctors constantly waking him up to examine him. About 2 weeks after going home from the hospital, we received a call from his pediatrician. Thomas' blood results were back, he was officially diagnosed with Early Infantile Krabbe Disease. We were told this over the phone....yes...over the phone. This news was devastating. Thomas was back in the hospital to replace his NG tube with an G tube placed in his stomach. The reality that our little Thomas was never going to be an active little boy set in. During Thomas' short life, we watched our courageous son slowly lose his ability to laugh, to smile, to breath on his own, to swallow, to control his eye movement, and to move his head arms and legs. Thomas was on 11 different medications at the time of his death, 4 of which were narcotics to control his breathing and seizures. Krabbe is a rare, fatal genetic disorder that affects the central and peripheral nervous systems. Children affected by Krabbe suffer greatly and typically do not live beyond their second birthday. My heart breaks for our son, Thomas, and for children who are born here in North Carolina and not given a fair chance at a healthy life. Sadly, I know of at least 4 families (5 including Thomas) that have watched their children slowly die , very recently, due to this disease, right here in North Carolina. When Thomas was diagnosed with this disease, we were devastated to learn our son would not be with us for long. What makes this news even worse is to find out that Thomas could have been tested, and treated, for this disease at birth and wasn't. Here, in North Carolina, Krabbe is NOT on the newborn screening list. WHY? Why does North Carolina not screen for this disease when one of the leading physicians on Krabbe is right here in North Carolina, Dr. Joan Kurtzberg at Duke University? For years, thousands of children have died and thousands more have become permanently disabled because they were not screened for all possible diseases at birth. You can prevent other children from needlessly suffering by sponsoring an amendment to the current newborn screening laws for North Carolina. Like many other diseases, Krabbe Leukodystrophy is only treatable if diagnosed before the child is symptomatic. Cord blood transplantation has proven for many to be a lifesaving treatment that can give children with Krabbe the potential for a healthy life. I am asking you to advocate for expanded newborn screening in North Carolina and that you sponsor legislation to add Krabbe and five similar disorders to its newborn screening panel. These Lysosomal Storage Disorders can be cost effectively screened together and must be diagnosed early to save children's lives! I appreciate your consideration on this life altering issue and look forward to our future correspondence.  

David Jessee
40,931 supporters
Update posted 9 months ago

Petition to U.S. Senate, Roy Blunt, Patty Murray, Jerry Moran, Richard Shelby, Thad Cochran, Lamar Alexander, Lindsey Graham, Shelley Capito, James Lankford, Dick Durbin, Jack Reed, John Kennedy, Marco Rubio, Chris Murphy, Joe Manchin

Urge U.S. Senate to approve $70M NIH funding for lymphedema and lymphatic disease research

United States Senator Charles Schumer (D-NY) has requested “$70 million in lymphatic and lymphedema research funding be appropriated to the Office of the Director at NIH to support extramural interdisciplinary research relevant to the lymphatic system in health and disease.” This would be an unprecedented achievement in making lymphatics and lymphedema a national heath priority. Its impact on future treatments and cures must not be underestimated. We must fight for this with everything available to us. The Lymphatic Education & Research Network (LE&RN), its spokesperson Kathy Bates, the research community, and Senator Schumer have brought this issue to the forefront. It is now up to us, as a community, to get this funding in the budget. The Senate Appropriations Subcommittee on Labor, Health, and Human Services must hear from you. First, sign this petition. Herein, the signers of this petition call upon committee members to add the Report Language of Senator Schumer to the 2017 Committee Appropriations bill. Second, write directly to the Committee Members to voice your support. Links to their webpages are provided below. Both actions are needed to secure this historic funding. Be part of the greatest lymphatic disease and lymphedema research initiative in history. Make this just the beginning. This is where it all starts, and it doesn’t happen without you. Sincerely,William RepicciExecutive Director, LE&RNSenate Appropriations Subcommittee on Labor, Health, and Human Services members:Senator Roy Blunt (Chairman, R-MO)Senator Patty Murray (Ranking Member, D-WA)Senator Jerry Moran (R-KS)Senator Richard Shelby (R-AL)Senator Thad Cochran (R-MS)Senator Lamar Alexander (R-TN)Senator Lindsey Graham (R-SC)Senator Shelley Moore Capito (R-WV)Senator James Lankford (R-OK)Senator Richard Durbin (D-IL)Senator Jack Reed (D-RI)Senator Jeanne Shaheen (D-NH)Senator Jeff Merkley (D-OR)Senator Brian Schatz (D-HI)Senator Tammy Baldwin (D-WI)Senator John Kennedy (R-LA)Senator Marco Rubio (R-FL)Senator Chris Murphy (D-CT)Senator Joe Manchin (D-WV)

Lymphatic Education & Research Network (LE&RN)
3,703 supporters
Update posted 9 months ago

Petition to U.S. House of Representatives, U.S. Senate, President Donald Trump

Legalize Lyme Disease

Lyme disease has reached epidemic proportions. It is the fastest growing infectious bacterial disease in America. Generally contracted through a tick bite, new evidence shows it is also contractable via mosquito, spider, or fly bite [1], from mother to child in the womb [2], or potentially through unprotected sex [3]. The CDC admits that it does not know how many people have Lyme disease. Estimates vary between 300,000 and 1.5 Million new cases diagnosed per year [4]. These figures do not include tens of thousands of undiagnosed or misdiagnosed cases. 25% of all Lyme cases are children. When Lyme disease is not treated early it can be debilitating, even fatal. The spiral-shaped bacteria (Borrelia) bore their way through every tissue, organ, or bone, causing damage wherever they go. The bacteria knowingly avoid treatment areas in the body and by changing their shape, mimic non-threatening cells. They create intelligent biofilms to protect themselves from antibiotics and their host's natural immune response. Studies now show that 1 in 5 cases may go on to become chronic due to Borrelia "persisters" [5].  Unfortunately, the CDC-approved test available for early detection fails approximately 50% of the time [6]. And due to abysmal funding for research, effective treatments are experimental and often long-lasting. The CDC's illegal preferential treatment of out-of-date and inaccurate Infectious Disease Society of America (IDSA) Lyme Treatment Guidelines [7] support a government narrative that chronic Lyme does not exist. Thusly, insurance companies are not required to cover treatment costs and patients are left to pay for long-lasting treatment out of pocket. Lyme Literate Medical Doctors (LLMDs) who practice life-saving medicine for Lyme patients are forced to operate outside of the insurance industry, for risk of being shut down. Such little information and training is available to physicians across the country, patients are left to suffer for years before they even receive a diagnosis [8]. By then, many have been misdiagnosed with any of the 300+ diseases that Lyme mimics [9]. They have lost their jobs and are on disability. Some (including children and teens) are heavily affected by the neuropsychological effects of the disease and succumb to suicide [10]. Others have died simply due to ignorance of doctors [11]. This cannot continue.  The CDC and IDSA have failed to control Lyme disease. As sufferers, care-takers, friends, family, and co-workers of those who are suffering, we urgently request from the President and all members of Congress: 1. Legislation Expanding The Definition Of Lyme Disease To Cover Chronic Lyme And Co-infections 2. Legislation Protecting Doctors Who Treat Chronic Lyme And Co-infections From Insurance Industry-driven Investigation And Shut-down 3. Heavily Increased Funding For Research Into Chronic Lyme Disease And Co-infections 4. Greatly Improved Testing With High Accuracy Rates (As Seen With Ebola And Other Infectious Diseases) 5. Education Of Doctors And The Public Regarding Symptoms And All Treatment Options -- This petition was originally featured on the We The People petition site. Thank you for signing and sharing with friends, coworkers, spiritual leaders, family members, loved ones, and strangers. It is time to Legalize Lyme disease, including chronic stage and co-infections! -- Sign to add your voice to establish proper legislation and funding of this global epidemic. Important resources: --  Sources: [1] New England Journal of Medicine: of Molecular Medicine: of Clinical Microbiology: Parasitologica: [2] Annals of Internal Medicine: PubMed: [3] Journal of Investigative Medicine: Raphael B. Stricker, MD On Sexual transmission of Lyme disease: [4] Dr. Richard Horowitz discusses new case estimates with Congressional Candidate Zephyr Teachout: [5] Scientific American: [6] Journal of Infectious Diseases, Wisconsin State Laboratory of Hygiene/College of American Pathologists Proficiency Testing Program: [7] Advocates Call on CDC to Remove Expired Lyme Guidelines from all Publications [8] Study of over 6,000 Lyme patients: [9] Can Lyme Disease Be Chronic? Dr. Richard Horowitz: [10] Psychology Today: [11] "Doctors Pushed ALS Diagnosis, Ignored Lyme", Valley Breeze:

Alison Childs
71,893 supporters