advocacy

Shared decision-making between patients and their doctors and healthcare providers was considered a critical step in the process of treating multiple sclerosis (MS), according to an article published in the journal Practical Neurology. The article “Shared Decision-making in Multiple Sclerosis Management” was written by Amy Perrin Ross, a board-certified…

Heidi Redl was in the physically demanding job of ranching when a doctor told her in 2004 that she had multiple sclerosis. Reluctant to give up her physical capabilities without a fight, the horseback rider and runner from Williams Lake, Canada, searched for unconventional as well as conventional MS treatments. In…

I was in Boston last week at the headquarters of Sanofi Genzyme. Yes, the big drug company. They brought together several people they consider to be “digital influencers” to pick their brains about what’s on the minds of people like you, who read what we write. Sanofi…

The National Multiple Sclerosis Society and a dozen other advocacy groups have banded together to support the Air Carrier Access Amendments Act of 2017, a bill seeking to strengthen the rights of airline passengers and close service gaps often faced by patients with disabilities, including those with multiple sclerosis (MS).

The British fundraising group The October Club and The MS Trust, a U.K. multiple sclerosis research and support organization, have announced an ambitious plan to potentially help thousands of advanced MS patients in need of services. Composed of people working in the financial equity industry in London, The October Club raises money for a different charity each year through…

I’ve just been reminded, as someone with multiple sclerosis, how fortunate I am to have good medical insurance. Unlike most other countries, where medical care is a right, in the U.S. that care is a privilege. Here the quality of care and too often the availability of that…

May 31 is World MS Day. In its honor, Teva Pharmaceuticals Europe has launched “Life Moments with MS” — a social media campaign to raise awareness about the challenges people with multiple sclerosis (MS) face every day. Teva’s campaign, which uses the hashtag #LifeMomentswithMS, also includes educational resources on what…

African- and Hispanic-Americans are less likely than whites to receive care for neurological diseases such as multiple sclerosis in a doctor’s office or clinic, according to a study. Many of them end up in a hospital emergency room after failing to obtain treatment that could have helped them avoid an…

There’s been lots of chatter on social media since the U.S. House of Representatives passed a measure last week that’s intended to repeal the Affordable Healthcare Act (Obamacare) and replace it with a new healthcare law. Lots of us with serious medical conditions are: a) worried, b) angry,…

People with multiple sclerosis (MS) and others with spinal cord injuries and disorders will speak at the United Spinal Association’s upcoming 6th Annual Roll on Capitol Hill, which takes place June 11-14 in Washington, D.C. Andrea Dalzell, Ms. Wheelchair New York 2015, will be among those advocating for greater access to complex rehabilitation technology.

I now introduce myself as a disability rights activist. I began to pay attention to local politics and related activities last fall. Our city redevelopment plans are charging along, without any city staffer to pay attention to the needs of the disabled. As such, I’ve been making the…

Members of Parliament are helping the Multiple Sclerosis Society of Canada commemorate May as MS Awareness Month. The lawmakers will be meeting with society representatives and other members of the MS community in the capital of Ottawa, May 1-3. MS Awareness Month is a run-up to World MS Day on May…

I knew it was only a matter of time before my MS neurologist would have MS PATHS available to collect clinical data from people who have agreed to participate. MS PATHS is an information- and biological sample-gathering clinical study from Biogen, the leading manufacturer of multiple sclerosis disease-modifying…

Genentech, Novartis and Sanofi Genzyme are sponsoring this year’s Walk MS, an annual event to raise funds for multiple sclerosis (MS) and the National Multiple Sclerosis Society (NMSS). Genentech, a division of Roche, returns as an MS Walk sponsor for the second year and will promote the “MS Voice”…

Caleb Taylor, a second-year University of Kentucky Law School student, has chosen a challenging way to raise awareness and raise funds for multiple sclerosis, a disease that changed his family’s life forever when it struck his mother. Taylor will pedal across America as part of the Bike the US for…

More than 2,000 bicyclists are expected to join in the 30th Annual Running of the Bike MS: Sam’s Club Round-Up Ride, set for May 6-7 in Fort Worth, Texas. The two-day, 163-mile trek’s objective is to raise $1.8 million in funding for people living with multiple sclerosis (MS). Last year, participants pedaled 279,000 miles…

The ABLE Act improvement bills were reintroduced into Congress this week and referred to committee on April 4. The bills died in committee in 2016 before an active campaign could garner enough attention in that election year. I urge all readers in the U.S. to call your representatives and senators to encourage them to…

As the challenge of living with multiple sclerosis (MS) often leaves patients feeling isolated and depressed, the biopharmaceutical firm EMD Serono has launched an online storytelling platform called My Story. The platform is designed to be an empowering and therapeutic support resource for patients and caregivers in their struggles with MS.

Caregivers are in the spotlight during MS Awareness Month and, as it draws to a close, one man with multiple sclerosis is calling for everyone with the disease to recognize them. Dan Melfi, who lives in the…

American patient groups and neurologists have clearly been giving Ocrevus (ocrelizumab) plenty of attention since news of its approval landed, as a sweep of U.S. reaction to the FDA’s decision showed. But what is happening elsewhere in regard to this first treatment for both primary progressive and relapsing multiple sclerosis (MS)?…

Being disabled by MS does not have many advantages. One — free city street parking in California — is likely to end soon. In the rush to garner parking revenue, though, the lack of concurrent discussion about providing dedicated handicapped parking (DHP) is troubling. The widespread abuse…

Carol Hardaway was diagnosed with multiple sclerosis (MS) in 1990. After years of enduring relapses that brought episodes of complete blindness, numbness, tingling, debilitating fatigue, and short-term memory loss, the longtime resident of Texas — a state which offers Medicaid only to specific categories like low-income families, pregnant women, and…

Alexa, Amazon’s little voice-activated information box, has just received a multiple sclerosis infusion. As part of MS Awareness Month, fifty facts about MS have been loaded into Alexa’s memory. If a user says “Alexa, start MS Awareness” the system will respond with a random MS fact. (And a short…

The potential approval of Ocrevus (ocrelizumab) this month supports the idea that, someday, a world free of multiple sclerosis (MS) is possible, according to Dr. Tim Coetzee, the National Multiple Sclerosis Society’s chief advocacy, services and research officer. While Coetzee — and the society he represents — realize the potential of…

Here is a transcript of Multiple Sclerosis News Today‘s interview with Dr. Tim Coetzee — chief advocacy, services and research officer for the National Multiple Sclerosis Society — about the importance of the U.S. Food and Drug Administration (FDA)’s awaited decision on Ocrevus (ocrelizumab), and the other ongoing research. Tim…

In recognition of multiple sclerosis (MS) awareness month, Acorda Therapeutics has launched its Alexa skill, called MS Awareness Facts.  The interactive voice-controlled service allows users to ask Amazon Alexa for information regarding MS and its debilitating symptoms. Amazon Alexa is a cloud-based service that enable customers to interact in…

MS Views and News, a non-profit multiple sclerosis (MS) advocacy organization, will host its second annual Champions Tackling MS Gala on April 22, with money raised going to support live educational events, community resources, and services intended to help improve the quality of life for people with MS. The Saturday event at the…

This was an eventful week. I was not feeling well and ultimately ended up in the hospital for a couple of days. I had severe neck pain that radiated to my shoulder and arm. In addition, I woke up one morning with severe chest pains. I couldn’t determine whether…

When describing a multiple sclerosis exacerbation (also called a relapse, attack, or flare-up), comparing it to a home’s circuit panel is a good analogy to use. When a fuse blows on the circuit board the power is interrupted. During an MS attack, the myelin sheath that covers nerve axons…

The practice of collecting data about how we MS patients go about living our lives, and then using that data to improve our patient care, seems to be gathering steam. In the European Union a project called Real World Evidence Data, or RWE, is working outside of the…