Topic

disease research

14 petitions

Update posted 2 months ago

Petition to Francis Collins, Jenni Glenn Gingery, Sean Tipton, Mary Green, Dr. Anuja Dokras, Dr. Barbara Levy, Jeremy Lazarus, Kevin Griffis, Polly Webster, Yvonne Lau, Richard Ricciardi

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

Often unrecognized PCOS (Polycystic Ovary Syndrome) can cause many physical and emotional symptoms and for the up to 10% -20% of women and girls with Polycystic Ovary Syndrome Worldwide, it is estimated less than half know what it is or that they have it. Many women with PCOS, have gone years without the proper diagnosis and have silently suffered not knowing what was truly wrong. Even in today’s medically advanced era, women from around the country are experiencing the same lack of response from a medical community with little understanding of PCOS, except in cases when the infertility aspect are addressed. As a result, single women, adolescents, LGBT, older women and those not trying to get pregnant have little chance of being diagnosed!!! PCOS can be a precursor to many life threatening conditions including type II diabetes, hypertension, cancer, cardiovascular disease, stroke and kidney problems if left undiagnosed or untreated. This means PCOS contributes to some of the leading causes of death and disability in women today. So why does all of this this matter? PCOS is the leading cause of female infertility in women of reproductive age PCOS is the most common endocrine disorder in women PCOS affects an estimated 14 milluon reproductive-age women in the U.S. Over 50% of PCOS patients are obese 50% of PCOS patients have diabetes by age 40 Approximately 34% of women with #PCOS have #depression and 45% have anxiety. PCOS patients are at higher risk to develop high blood pressure, lipid disorders and coronary artery disease As many as 40% of PCOS patients as young as age 30-45 may have coronary calcification (a warning of heart attack risk) To put this in to further perspective... PCOS affects about 14 million women in the USA. That's more than the number of people diagnosed with Breast Cancer, Rheumatoid Arthritis, Multiple Sclerosis and Lupus combined!" - Louise Chang, MD Therefore, PCOS leaders, government officials, organizaions and advocates are charged with identifying strategies for achieving substantial improvement in the quality of health care and education for all patients living with the syndrome.  PCOS patients can not and should not simply be dismissed as a gynecological or infertility problem! With more than half of the women with PCOS predestined to have prediabetes or type 2 diabetes before the age of 40,  and increased risks for heart disease, stroke and endometrial cancer, finding ways to diagnose, screen and educate on the connection between thesee diseases to PCOS is imperative! Without the proper education and awareness of these connected disorders and the seriousness of PCOS as a metabolic endocrine disorder, these epidemics will continue to rise. The NIH needs to allocate more than 0.1% of funding to the approximately 30 million women affected in The United States and needs to engage and direct federal agencies to support more research, better physician education and better tools and resources for women and girls with the syndrome to live healthier lives with healthier outcomes!

Ashley Levinson
28,340 supporters
Update posted 6 months ago

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

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)
4,528 supporters
Update posted 8 months ago

Petition to BONO and U2

Meniere's Disease: Raise Awareness

Bono we really need your help….. We are speaking on behalf of the millions of people, worldwide, who suffer lifetime's filled with constant ‘vertigo’ from a little known and very misunderstood disease, known as Meniere's disease.  Meniere’s disease steals lives, leaving it's victims unable to function as they once did. Many sufferers are reduced to bystanders to their own existence, unable to work, drive, attend family gatherings, or simply play with their kids. Meniere’s causes dizziness, severe vertigo, drop attacks, tinnitus, and sensitivity to light and sounds. Meniere’s attacks leave their victims so dizzy, and unable to walk or balance, with even the slightest movement bringing hours of nausea and vomiting. If that wasn’t enough, most Meniere’s sufferers develop hearing loss and many go completely deaf. Recently, a fellow musician and founder of the Trans Siberian Orchestra, Paul O'Neill died from the effects of Meniere's. His band mates said: "For Paul, this was a constant battle, causing him to race against time to write and record as much music as possible, before, like Beethoven, his ears ultimately betrayed him. At the time of his death, he was writing two rock operas."  Another musician Ryan Adams, is a long time Meniere's sufferer, and has had to stop many shows just because someone in the audience used a camera flash. To a person with Meniere's, a mere flash can send them tumbling down into a severe vertigo attack lasting hours. The video link below shows one occurrence for Adams :  https://youtu.be/c7PdZmLcbng This April, singer Huey Lewis had to cancel his entire 2018 touring schedule because he had suffered severe hearing loss from Meniere's, making him unable to sing, or hear his bands music. https://www.rollingstone.com/music/news/huey-lewis-cancels-2018-tour-dates-due-to-hearing-loss-w519131 It is now known, that the real reason Vincent Van Gogh cut off his ear, was because he too, was a Meniere's sufferer: "A medical report published contends that Vincent van Gogh was not mad and did not have epilepsy, as has been speculated, but had a painful inner ear disorder that caused him to cut off his left ear and eventually to kill himself."  ~ New York Times https://www.nytimes.com/1990/07/25/arts/at-last-medicine-really-listens-to-van-gogh.html In the research paper “Impact of Meniere’s Disease on Quality of Life” by the University of California at San Diego, researchers found that the quality of life of Meniere’s patients, while not actively experiencing vertigo, was comparable to adults with life-threatening illnesses such as cancer and AIDS. They further discovered that during periods of ‘acute vertigo’ their quality of life dropped to a point that Meniere’s sufferers were on par with non-institutionalized Alzheimer’s, Cancer and AIDS patients six days from death. In a 2009 study on post-traumatic stress disorder (PTSD) performed by Kirby, S.E. and Yardley, L. it was found that the incidence of  (PTSD) and health anxiety, is much higher than in non-sufferers. Nearly one in eight people with Ménière’s were found to meet the criteria for full PTSD, compared to the general population where just one in sixty has PTSD. Yet, Meniere’s remains relatively unknown worldwide, and dramatically underfunded when it comes to crucial research dollars. Presently, The National Institutes of Health (NIH) have "0" dollars directly allocated for Meniere's research based on their 2018 online report found here: NIH Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC) budget:https://report.nih.gov/categorical_spending.aspx This is why we are reaching out to you Bono, and your U2 band mates, to read the thousands of heartbreaking comments from petition supporters and decide to help us in our cause to 'raise awareness' for this debilitating disorder. We are respectfully asking that you would consider creating a simple public service video for 'YouTube', possibly using your song "Vertigo", to help all the people suffering from Meniere’s disease. If you had another idea to help, we would be glad to listen. Your support would greatly help the worldwide Meniere's community to spread awareness for this complex disease, and hopefully increase the 'desperately needed' research dollars that will enable us to have better treatments, and ultimately find a cure.  Right now there are Meniere's sufferers waiting in Afghanistan, Algeria, Argentina, Australia, Belgium, Bolivia, Brazil, Chile, Croatia, Canada, Colombia, Cyprus, Costa Rica, Croatia, Cuba, Denmark, Dominican Republic, Finland, France, French Polynesia, Germany, Greece, Greenland, Hong, Kong, Iceland, Ireland, India, Israel, Italy, Korea, Latvia, Lebanon, Malta, Morocco, Mexico, New Zealand, Netherlands, New Caledonia, Nicaragua, Norway, Pakistan, Peru, Philippines, Poland, Portugal, Puerto Rico, Russian Federation, Scotland, Singapore, Slovakia, Spain, South Africa, Sweden, Switzerland, Tunisia, Turkey, United Arab Emirates, United Kingdom, United States, Uruguay, Venezuela, Virgin Islands and Wales, all who have supported this petition.  Petition Supporter: Dr. Jose A Lopez-Escamez MD PhD Our Meniere’s Awareness petition has received the support of the prominent Meniere’s researcher, Dr. Jose A Lopez-Escamez MD PhD who's research team in Genyo, Granada, Spain has identified the ‘first genes’ causing familial Meniere's disease. We welcome Dr. Lopez- Escamez’s support and commend his work, which brings those who suffer from Meniere’s disease, one step closer to a cure. Dr. Jose A Lopez-Escamez is the author of 120 research studies addressing Meniere's disease and other vestibular disorders: https://www.researchgate.net/profile/Jose_Lopez-Escamez/publications/4 The Vestibular Disorders Association VEDA's Mission is to inform, support, and advocate for the vestibular community. VEDA envisions a global community where vestibular disorders are widely recognized, rapidly diagnosed, and effectively treated. VEDA recognizes their responsibility to be a champion for the vestibular community and to achieve measurable results. VEDA serves all people with vestibular disorders with dedication, understanding and compassion. http://vestibular.org/understanding-vestibular-disorder/types-vestibular-disorders    

Judy McNamara Tripp
13,873 supporters