Topic

Disability Rights

334 petitions

Update posted 19 hours ago

Petition to Francis Collins, Tom Price

Increase Funding For ME/CFS So We Can Find a Cure

I am only 31, and yet, simple tasks like taking a bath completely exhaust me. This is because I am one of millions of people worldwide who suffer from Myalgic Encephalomyelitis (ME/CFS), a complex, multisystemic disease that causes disabling symptoms like chronic pain, cognitive impairment, exertional intolerance, severe weakness and crippling fatigue. Many days I am too weak to do anything but walk to the bathroom and back to my bed. Before I became sick, I was able to attend LSU, study abroad, enjoy SEC football and earn a degree in Journalism. Now, just a trip to the grocery store can land me in bed for days. I've lost my independence and take 25 pills a day just to manage the pain and symptoms of the illness. I have lost my life as I knew it. Health Agencies have dismissed this disease for decades and failed to take the health of millions of sick people seriously. There are no FDA approved treatments or cures for the disease on the horizon, which is the direct result of a major lack in funding for biomedical research. In the 2016 federal budget, the NIH allocated $6 million toward studying ME/CFS. More than double that amount was spent on male-pattern baldness. Meanwhile we are suffering, some of us bed bound, with little hope and our futures up in the air. We can do better. Please stand with me and the millions suffering with this life-sucking disease in demanding that Francis Collins keep his promise and that the NIH drastically increase their allocated funding for ME/CFS research. The burden of this disease is huge, on families and the economy. It costs our country billions every year in lost productivity because more than half of us are too sick to work. Families savings are drained as most insurance fails to cover the high cost of longterm management.  There are so many others like me; once living productive lives with families and promising careers. Now we're stuck with an orphaned disease and our pre-sick lives are just a memory. Some patients are so severely ill, they are confined to dark rooms, unable to tolerate sound, talking, or light. They cannot walk and some are unable to eat. They aren't "living" they are just hanging on. And it doesn't have to be this way. I started this petition because people suffering from ME/CFS just want our lives back, and that will only happen with an effective treatment and eventual cure. With your signature, we can hold the NIH and congress accountable for taking our disease seriously and honoring our request to increase the NIH research budget to $100 million for ME/CFS funding. We can also restore hope to millions world-wide that they may live again, including me and my dog Monty. Thank you.    #WeCanDoBetter Let's do it now. Read about my weird sick life at 25pillsaday.com  Visit millionsmissing.org for more information about upcoming protests.  

Mary Gelpi
41,737 supporters
Update posted 1 day ago

Petition to Charlie Baker, Massachusetts State Senate, Massachusetts State House

Disability for Firefighters with Parkinson's Disease due to toxins on the job. (MA H.1455)

  A fire can expose firefighters to millions of chemicals and toxins. We have become aware of the massive risks these toxins pose for first responders, who breathe them in, ingest them, and absorb them through the skin while putting their lives on the line. Most states have adopted “cancer presumptive laws,” meaning that if a firefighter gets cancer on the job, they are automatically awarded accidental disability to see them through their illness. But the increased rate of Parkinson’s Disease (PD), a degenerative brain disorder, in firefighters has mostly been ignored. I am a firefighter who was recently diagnosed with Parkinson’s. I am not alone -- while the rate of PD in the general population is 3 out of 1000, it is 30 out of 1000 for firefighters. I am young to be experiencing this disease, but that’s often how it works for emergency responders, and there is mounting evidence that our exposure to burning chemicals is the culprit. I have 12 years left until I reach retirement, and, unfortunately, I am not sure I'll be able to keep working that long. My state of Massachusetts has great presumptive laws for firefighters, not only for cancer, but for heart and lung disease as well. It is now time for our legislators to include Parkinson’s Disease among these illnesses. We cannot ignore the connection between toxic chemical exposure and PD anymore. While PD usually develops slowly among the general population, symptoms often hit firefighters fast, seemingly out of nowhere. Research now suggests that toxin-induced PD has a more rapid onset than genetic PD, another indicator that we are, indeed, contracting this illness on the job. For those of us struggling with Parkinson’s, walking, talking, grasping and even blinking become increasingly difficult tasks to accomplish. Needless to say, continuing to work as firefighters while battling this disease is most often not possible. Indiana recently became the first state to include Parkinson’s in its presumptive law. This has provided unimaginable relief to many firefighters, who were running out of sick time, and facing unemployment and massive medical bills due to their debilitating disease. We now must band together and demand that more states recognize the link between firefighting and PD, and include PD among the illnesses covered by their presumptive laws. Please sign this petition to include Parkinson's in Massachusetts’ presumptive law, which would allow firefighters with Parkinson's to retire on full accidental disability.

Greg Heath
53,145 supporters