Topic

disease research

26 petitions

Update posted 1 month 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
11,240 supporters
Update posted 3 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)
3,104 supporters
Update posted 4 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:  ILADS.org lymedisease.org lymestats.org lymediseasechallenge.org --  Sources: [1] New England Journal of Medicine: http://www.nejm.org/doi/full/10.1056/NEJM199006143222415Journal of Molecular Medicine: http://link.springer.com/article/10.1007/BF01711648Journal of Clinical Microbiology: http://jcm.asm.org/content/26/8/1482.full.pdfPubMed: http://www.ncbi.nlm.nih.gov/pubmed/4075471Folia Parasitologica: http://folia.paru.cas.cz/pdfs/fol/1998/01/11.pdf [2] Annals of Internal Medicine: http://annals.org/article.aspx?articleid=699780 PubMed: http://www.ncbi.nlm.nih.gov/pubmed/7648832 [3] Journal of Investigative Medicine: http://www.lymedisease.org/lyme-sexual-transmission-2/Conclusions Raphael B. Stricker, MD On Sexual transmission of Lyme disease: https://twitter.com/NorVect/status/604992062421921792 [4] Dr. Richard Horowitz discusses new case estimates with Congressional Candidate Zephyr Teachout: https://youtu.be/rTIeyKuo8JY [5] Scientific American: http://www.scientificamerican.com/article/lyme-disease-may-linger-for-1-in-5-because-of-persisters/ [6] Journal of Infectious Diseases, Wisconsin State Laboratory of Hygiene/College of American Pathologists Proficiency Testing Program: http://www.lymedisease.org/lymepolicywonk-two-tiered-lab-testing-for-lyme-disease-no-better-than-a-coin-toss-time-for-change-2/ [7] Advocates Call on CDC to Remove Expired Lyme Guidelines from all Publications https://www.webwire.com/ViewPressRel.asp?aId=202124 [8] Study of over 6,000 Lyme patients: http://www.lymedisease.org/wp-content/uploads/2015/04/lymedisease.org-patient-survey-20151.pdf [9] Can Lyme Disease Be Chronic? Dr. Richard Horowitz: http://www.foxnews.com/health/2015/05/06/lyme-disease-debate-can-condition-be-chronic/ [10] Psychology Today: https://www.psychologytoday.com/blog/emerging-diseases/200903/infection-can-change-your-personality-theres-plenty-proof?collection=126213 [11] "Doctors Pushed ALS Diagnosis, Ignored Lyme", Valley Breeze: http://www.valleybreeze.com/2014-12-17/cumberland-lincoln-area/geraghtys-doctors-pushed-als-diagnosis-ignored-lyme#.Vub33JMrJE5

Alison Childs
53,563 supporters
This petition won 5 months ago

Petition to U.S. Senate, U.S. House of Representatives, World Health Organization, United Nations, Global Leaders, Barack Obama, Michelle Obama

Declare March 6th "World Lymphedema Day™"

The First Annual World Lymphedema Day™ — March 6, 2016 The time has come to mount a worldwide campaign against a Lymphedemic®. Lymphedema (also spelled "lymphoedema") and lymphatic disease advocates from around the world are joining together to establish the first annual World Lymphedema Day. March 6th was chosen by advocates in India, Europe and elsewhere to coincide with the current recognition of this day in the United States, Canada, and Australia. The Lymphatic Education & Research Network fights lymphedema and lymphatic disease through education, research and advocacy and is proud to be the international sponsor of World Lymphedema Day. Why We Need World Lymphedema DayGreat attention is paid to the battle against cancer. Yet, most people haven’t heard of lymphedema, which cancer frequently leaves in its wake. We hear little of the children born with lymphatic malformations or those who inherit lymphedema. There is silence on the issue of wounded war veterans, civilian casualties and others who suffer from lymphedema due to physical trauma or as a result of surgery. Too many who suffer feel alone. Too many medical professionals remain uneducated about this disease or underplay the devastating impact it has on a person’s quality of life. Too many go without the necessary therapeutic care. And this tragedy is compounded when government and private health insurers deny patients coverage for even the universally accepted treatments that this disease demands. The World Health Organization estimates that over 150 million people worldwide have secondary lymphedema, while the National Institutes of Health (NIH) states that the incidence of primary lymphedema could be as high as 1 in 300 live births. Of the 1.4 billion people in 73 countries threatened by lymphatic filariasis, commonly known as elephantiasis, 120 million are currently infected and 40 million of these patients are disfigured and incapacitated by the disease. The Centers for Disease Control and Prevention (CDC) warns that the incidence of secondary lymphedema among cancer survivors is between 20-40%. Lymphedema is estimated to affect up to 10 million people in the United States alone according to Stanford University. This represents more Americans than those suffering from AIDS, Parkinson’s disease, Muscular Dystrophy, Multiple Sclerosis and ALS—combined. Finally, the continuum of diseases impacted by the lymphatic system includes heart disease, AIDS, diabetes, rheumatoid arthritis and cancer metastasis. Yet, lymphatic diseases routinely go undiagnosed and untreated, and research is grossly underfunded. A Call to ActionThe message from lymphedema and lymphatic disease advocates is clear. “Lymphedema and lymphatic diseases are ready to take their place as international priorities.” The days of being invisible are over. Together, we announce World Lymphedema Day to be celebrated on March 6th. Join this movement by signing the online petition. Let’s show that every country around the globe supports this cause. LE&RN and its international members are inviting patients, their family and friends, advocates, politicians and treatment practitioners from every country to make their voices heard by signing the petition to recognize World Lymphedema Day. Together, we can change the world. William RepicciExecutive DirectorLymphatic Education & Research Network About LE&RN Founded in 1998, the Lymphatic Education & Research Network is a 501(c)(3) not-for profit organization whose mission is to fight lymphatic disease and lymphedema through education, research and advocacy. LE&RN provides valuable education resources for the millions of people who suffer from lymphedema and lymphatic disease. LE&RN fosters and supports research that can deepen the medical community's understanding of the lymphatic system. For more information about lymphatic disease or the Lymphatic Education & Research Network, please visit www.LymphaticNetwork.org or call (516) 625-9675.

Lymphatic Education & Research Network (LE&RN)
5,239 supporters