Tag Archives: multiple sclerosis

Medical Research: It’s about you and me

collage fact sheetResearch!America’s newest fact sheet series highlights the personal stories of medical research and the importance of increasing the NIH budget in FY15. We hope you will share these fact sheets with your representatives or congressional candidates, or take it with you on Hill or in-district visits. No one who reads these stories can doubt the significance of medical progress. A stronger investment in research is needed now more than ever!

Here are their stories:

What new discoveries are we delaying and missing when we slow the pace of medical and health research?

We’ve made progress. But the funding to sustain it is eroding.

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A Weekly Advocacy Message from Research!America: 5 by June 5

Dear Research Advocate:

Today, June 5, is a milestone in our Ask Your Candidates! (AYC!) voter education initiative. Today is the culmination of 5 by June 5, a nationwide push to encourage voters to ask their candidates about the priority of medical progress and encourage five others to do the same. There is still time for you to join us! Click here to send a message to the candidates running for House and Senate in your district. You can customize the message to include your personal reasons for supporting medical research or you can just click send on the message we’ve provided. In this case, it doesn’t just take a village, it takes a nation. Please help us reach voters in every state and every congressional district. Should accelerating medical progress be a higher national priority? If our future leaders understand that their answer to that question is truly important to Americans, perhaps they will enter office as research champions.

Last week, we shared a fact sheet about John Hudson Dilgen, a child with a debilitating and potentially deadly disease called Epidermolysis Bullosa. Medical research is about John. It is also about Carrie, a woman living with a severe form of Multiple Sclerosis. We hope you will find this fact sheet about Carrie useful in your advocacy. When we sent John’s story to Congress, the response was truly overwhelming. Carrie’s story will no doubt have the same impact.

Two articles, one in the Washington Post on June 1, and one in today’s New York Times, offer profound examples of the power of medical research. The Post article discusses accelerated approval of a new medicine that can extend life for a subset of patients with lung cancer, and the Times article describes DNA testing that led to the rapid diagnosis and successful treatment of a little boy whose life hung in the balance. Both of these stories involve precision or personalized medicine, a hallmark of modern medical progress.  Continue reading →

May 29 is World MS Day

Multiple sclerosis, or MS, is a neurological disorder that is a leading cause of disability in young adults. May 29 is World MS Day; started in 2009, it is a global campaign to raise awareness of MS which affects more than 2 million people world-wide and an estimated 400,000 Americans. There is no cure for MS and current therapies have only limited benefits to slow disease progression. Learn more about MS on Research!America’s fact sheet.


Continue reading →

MS Awareness Week is March 11-17

The National Multiple Sclerosis Society is marking this year’s multiple sclerosis Awareness Week with a national campaign, “Every Connection Counts.” The campaign seeks to raise awareness of MS and draw attention to the impact of MS; this disease “divides minds from bodies, pulls people from their lives and away from one another,” according to the National MS Society.

Multiple sclerosis is a chronic, debilitating condition that is triggered by the body’s immune system attacking the central nervous system, which includes the brain, spine and optic nerves. This aberrant immune response targets myelin, a protective sheath that covers nerve fibers like rubber around an electrical copper wire. Without the protective myelin cover, nerves don’t transmit signals properly and are more susceptible to damage from future immune attacks.

The symptoms of MS can be erratic and each patient’s symptoms can vary widely, from blurred vision to loss of muscle control and paralysis. Medical diagnosis of MS is complicated by the variability in which parts of the body are affected and how often the symptoms are present. In some patients, symptoms flare up and then get better, while in others the symptoms progress and get worse over time with no significant periods of improvement.

Visit the National MS Society’s webpage to access tools and resources for MS Awareness Week. You can also read Research!America’s recently published fact sheet about MS, published with the MS Society, here. Want to get involved in advocacy for the MS Society? Check out their upcoming events that are held through the US and watch their YouTube video on MS advocacy.

Research!America President and CEO Mary Woolley Applauds Supreme Court’s Dismissal of Embryonic Stem Cell Case

January 9, 2013

The U.S. Supreme Court’s dismissal of Sherley v. Sebelius, a case intended to block federal funding for scientists conducting embryonic stem cell research, is a victory for patients and the research community. This key decision will allow the continuation of federal funding from the National Institutes of Health, providing essential support for scientists to conduct lifesaving research. Embryonic stem cells, which can repair or replace damaged tissue and organs, have advanced research aimed at finding cures and therapies to treat a wide variety of diseases and disorders including vision impairment, spinal cord injuries, and multiple sclerosis.  Clinical trials have also shown promising therapeutic applications to help fight cancer, Parkinson’s disease, diabetes and other disabling illnesses. We applaud the ruling and will continue to support such innovative research that could save millions of lives.

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