advocacy

This is not the week to tell me how good I look … even if I look and feel good. The week of Oct. 13 is Invisible Disabilities Week. As we all know, multiple sclerosis (MS) can be as invisible as Casper the Ghost. Invisible Disabilities Week isn’t limited…

Through its Stop MS Appeal campaign, the United Kingdom’s MS Society seeks to raise £100 million (almost $125 million) within the next decade to advance research and treatments that will stop multiple sclerosis (MS) progression. Over the next three months, the organization will run an extensive advertising campaign…

Leading up to Canada’s Oct. 21 federal election, the Multiple Sclerosis Society of Canada is urging citizens to write their local candidates, asking for greater support of those living with the neurodegenerative disorder. Called #MakeMSMatter, the Sept. 4 through Oct. 21 online letter-writing drive is an effort to…

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 “When do you tell your employer about your MS?” from Jan. 15,…

Cathy Tolk, a multiple sclerosis (MS) patient and a motivational speaker, has opened a website that features her weekly articles, video blogs or  vlogs, inspirational messages, and mentions of two published books. Tolk, who lives in Connecticut, was diagnosed with MS in 1995 after years of bringing joy to…

I recently sent my neurologist a thank-you card. A friend of mine was incredulous and truly baffled at my gesture. “Why would you thank your doctor?” she asked. Why wouldn’t I? I am thankful for my doctor’s wisdom and also her heart. She is an elusive hybrid of extreme intelligence…

The idea, they say, is to keep having birthdays, and I agree. I see aging as a precious gift, and when you live with multiple sclerosis (MS), that gift is even more golden with each passing year. We earn every wrinkle, gain new…

The 11th annual “Burgers to Beat MS” day is set for Aug. 22 in Canada, with $2 from each purchase of an A&W Teen Burger going to the MS Society of Canada to support people living with multiple sclerosis (MS). Supporters may also round up their in-restaurant bill to the nearest…

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…

Rutgers Health is leading the Pediatric Multiple Sclerosis and Demyelinating Diseases Program, the only program in the state of New Jersey designed specifically to support children with multiple sclerosis (MS). The support program seeks to promote children’s access to cutting-edge therapies and clinical trials, and to educate…

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…

Perched atop a lift at the intersection of Main and Third streets in downtown Los Angeles, artist Lydia Emily cheerfully answered questions from a reporter 2,500 miles away via cellphone while working on a mural three stories high. Periodically, she interrupted the interview to banter with co-workers, and gawking passersby.

You may have felt what Bethanee Epifani Bryant has felt in a doctor’s office. I think many patients have, but most of us can’t paint the picture of our experiences that Bryant can paint. And she paints it using words. Bryant is a poet. “I sit on the…

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…

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.

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,…

  Fatigue falls hard as I look out on the first hot day of the year. I struggle to focus as my head bobs. This is my new normal. The attacks are merciless,…

National organizations that represent patients with multiple sclerosis (MS) welcome the U.S. Food and Drug Administration’s March 26 approval of Novartis’ oral therapy Mayzent (siponimod) — but they complain that, at $88,500 per year, the treatment is overpriced. The Multiple Sclerosis Society of America (MSSA) is clearly upbeat about the…

In recognition of Multiple Sclerosis Awareness Month, AscellaHealth, a national pharmacy benefit management company, is calling attention to its clinical and educational program designed to assist individuals with multiple sclerosis (MS). The program plan is intended to offer specialty pharmacy strategies to help manage costly and complex…

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…

  It’s happened to me, and if you fly with a scooter or a wheelchair, I bet it’s happened to you, too: a busted or missing set of wheels on arrival.   On a flight from Washington, D.C., to Venice, my scooter went to Copenhagen. On a flight from…

I am excited and thankful to share with you a new collaboration between iConquerMS and the National Multiple Sclerosis Society (NMSS). For several years, I have worked with the people at the Accelerated Cure Project (ACP), a nonprofit organization that is the overseeing body for iConquerMS, to…

We all know how expensive health insurance can be. On the social media sites that I browse, I always see stories of people with MS who find themselves in a bind due to the healthcare system in the U.S. Some can’t work because their MS has robbed them of…

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…

To more widely recognize and help those caring for people with multiple sclerosis (MS) and other chronic diseases, Merck KGaA (known in the U.S. and Canada as EMD Serono) is expanding its global Embracing Carers program to include Brazil and possibly China. “Caregivers are a hidden pillar within the…