advocacy

This month marks the third anniversary of my column, “The MS Wire.” After writing two columns a week for most of those 156 weeks, it isn’t always easy to come up with fresh ideas. Tonight was one of those nights. With my deadline approaching, my well of ideas was…

The glow of the fireworks bathes the surrounding trees. A kaleidoscope of blue, yellow, and red illuminates the night sky. It is a day of picnics, parades, and pyrotechnics. It is the Fourth of July, when Americans celebrate gaining their independence from Great Britain. I can relate to celebrating…

Rather than hiding from the storm, it’s better to learn to dance in the rain, as I like to say. Ali Stroker, who plays Ado Annie in the Broadway revival of the musical “Oklahoma,” has learned to dance in a wheelchair. She was recognized this week at the Tony…

The Multiple Sclerosis International Federation (MSIF) is encouraging family members, caregivers, and patients affected by multiple sclerosis (MS) to participate in World MS Day today. Created by MSIF and its members in 2009 to promote solidarity and bring hope to those affected by MS, the global initiative takes…

Second in a series. Read part one.  I’m actually driving! I really can’t remember the last time I had done so. The car I’d had for years from Motability, a car and scooter program in the U.K. to help the disabled enjoy worry-free motoring (it really works, folks), had…

Robert Scola Jr. is a federal judge in Miami, and he’s just recused himself from a case involving the UnitedHealthcare (UHC) insurance company. The case is one of two filed in Miami over the last two months claiming that UHC has improperly denied coverage for a specific cancer…

As his moniker suggests, multiple sclerosis (MS) patient Paul Pelland is in it for the long haul. Known as “Longhaulpaul,” Pelland recently set a world motorcycling endurance record — his third — on a dynamometer while raising $18,500 for MS research and patient support. Pelland rode his Yamaha Star Venture for…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Could US Gov’t Probe Threaten Pharma Patient Assistance Programs?” from Oct. 12, 2018.

Few things scare me. I mean, truly frighten me to my core. While I flee from bees and scream at spiders, I have been both stung and bitten. Scary movies, no matter how asinine, freak me out. Being alone in the dark invokes vivid imagination. Jason, Freddy, and Michael Myers.

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic “Have you ever been discriminated against due to your disability?” from May 29,…

Over the past few months, I’ve had a few things to say about actress Selma Blair and the very public way in which she’s been handling her MS diagnosis. When Blair went public with her MS last October, she did it on Instagram, writing, “I am…

More than 21,000 people have signed a petition calling for Ocrevus (ocrelizumab) to be made available by the National Health Service (NHS) in England for people with primary progressive multiple sclerosis (PPMS). According to an MS Trust press release, the…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Visit our forum. This week’s question is inspired by the forum topic, “With MS I have learned the importance of…

A collaborative initiative between Lyfebulb and Celgene — called “Addressing Unmet Needs in MS: An Innovation Challenge” — is inviting applications from U.S.-based entrepreneurs who have multiple sclerosis (MS), or who have been affected by the disease, and whose companies are trying to find solutions to address unmet needs…

Patients want to be more involved in their healthcare, but it’s not an easy process. I’ve written before about the hurdles we have to overcome to get some healthcare providers to communicate with us, to listen to what we have to say about our medical problems, and even…

Hoping to expedite multiple sclerosis (MS) research and boost patient participation, the Accelerated Cure Project (ACP) for Multiple Sclerosis is teaming with the National Multiple Sclerosis Society. As part of the collaboration, the MS Society will make use of ACP’s iConquerMS, a research initiative to increase the engagement…

I’m writing again about someone with MS who was blocked from a handicapped parking spot by someone who isn’t handicapped. I know, it happens all the time. But this time was a little different. The spot was blocked by a television news crew. And that struck a nerve…

Life. It’s fragile, fleeting, beautiful, and heartbreaking. It is the most precious gift we have. Approximately one month ago, the senior columns editor for Bionews Services received her wings. Her name was Serena. Ironically, I never met Serena. We communicated only online. As I think about my journey thus…

“Deceptive” and “false” are two words used by the U.S. Federal Trade Commission (FTC) to describe marketing claims by two stem cell treatment clinics in California. According to an FTC complaint, the clinics had been advertising that they were using amniotic stem cell therapy to successfully treat serious diseases, including…

To support multiple sclerosis (MS) patients and caregivers — and cutting-edge research — the 2018 National Multiple Sclerosis Society for Bike MS: City to Shore Ride 2018 in New Jersey raised more than $4.4 million. The event’s local presenting sponsor, supply chain solutions provider NFI, raised more than…

Sorry, this story is definitely parochial and about being disabled, rather than narrowly focused on having MS. It also turns out to be somewhat celebratory — albeit starting from a criticism. Before I get to that, a bit of history. The black cab is an international symbol for London like…

People with multiple sclerosis (MS) rarely get the opportunity to talk to the people who design their medications. But a new collaboration is providing that opportunity to a few of us. The Accelerated Cure Project for Multiple Sclerosis (ACP) and pharmaceutical manufacturer EMD Serono have begun working together…

Everything can be more challenging when you have a disability, and being part of the workforce can add even more challenges. The month of October is National Disability Employment Awareness Month (NDEAM), and according to the U.S. Department of Labor’s website, this year’s theme is “America’s Workforce: Empowering All.”…

A new U.S. law designed to update and expand data on Americans with multiple sclerosis (MS) and similar illnesses will significantly advance disease research, said the National Multiple Sclerosis Society (NMSS). The spending bill, signed into law Sept. 28 by President Trump, provides $5 million to the Centers for…

Every life has purpose. Every voice has power. I decided long ago to speak my truth. My advocacy journey has inspired me to share my experiences courageously, and to embrace all that I am. Advocacy is defined as public support for, or recommendation of, a particular cause or…

A&W Food Services of Canada, a chain of hamburger restaurants, in partnership with the Multiple Sclerosis Society of Canada, raised more than $1.9 million at its 10th annual “Burgers to Beat MS” campaign Aug. 16. This is the largest amount the campaign has raised. To celebrate Burgers to Beat MS campaign,…

The Multiple Sclerosis Association of America (MSAA) announced that it will expand its MRI Access Fund to help meet the growing demand for magnetic resonance imaging (MRI) tests within the multiple sclerosis (MS) community. The fund is designed to help cover the costs of brain and spinal MRI scans…

Researchers at the University of Missouri found that a lack of appropriate clothing designed for people with disabilities, caused by accidents or chronic diseases like multiple sclerosis (MS), can be a barrier to participation and a sense of inclusion in the workplace. Because workplace attire can be specific and…

Canada’s healthcare system is excellent for people with common ailments like diabetes or high blood pressure, but it’s “basically failing the nearly three million Canadians with rare diseases.” So says Durhane Wong-Rieger, president and CEO of the Canadian Organization for Rare Disorders (CORD), a Toronto-based network representing 102 patient advocacy…

A North Carolina couple living with multiple sclerosis have raised more than $20,000 so far this year to support Discovery MS, a nonprofit research initiative that is part of Duke University’s School of Medicine. Specifically, the money will support program efforts  to improve MS diagnosis and prognosis, gain a clearer understanding…