advocacy

In a nationwide survey of caregiver abuse and neglect among Americans with advanced multiple sclerosis (MS), more than half of respondents reported some form of mistreatment, with psychological and financial abuse being the most common. Having a caregiver with a mental illness was the greatest risk factor for mistreatment, the survey…

The National Multiple Sclerosis Society, together with the Lewin Group, has launched a survey to assess the economic impact multiple sclerosis (MS) has on patients and their families. In the survey, which can be found here, MS patients and/or their family members are asked to answer…

After I received my diagnosis of multiple sclerosis, my nurse handed me a leaflet explaining how to tell those at my workplace I’m “DISabled,” and what that means, and another leaflet explaining how to claim DISability benefits. The thing is,…

The U.S. Justice Department has the manufacturer of Copaxone (glatiramer acetate injection) in its crosshairs, and the outcome could have a much greater reach. It appears the case could directly affect the copay help many of us receive for our medications and the patient services some drug companies provide.

“What was the date of your last relapse?” the neurologist asked while peering over her glasses at me.  I stared back blankly and then shrugged with a sheepish smile. I knew the year but couldn’t remember the exact date because it was seven years ago!…

In early July, I wrote a column about Disability Pride Month. It’s not for me, I said. I questioned the word “pride” and asked whether we need a special month to advocate for a more inclusive world. Several people commented on that column — some supported my thoughts, while…

“You look OK to me.” He stood, towering over me, his big belly billowing from his shirt as he straightened up and lifted his chin, glaring down at me over folded arms.  I swallowed. Anxiety rushed through me. What am I going to do? I was desperate…

July is Disability Pride Month. Now, don’t slam me right away for writing this, but I don’t think we need a month highlighting disability pride — just like I don’t think we need a month in October spotlighting that we have rare diseases, especially because to me, multiple sclerosis…

Last updated April 25, 2023 In June, the U.K. marks Carers Week, which got me thinking about how a chronic illness diagnosis often affects a patient’s entire family.  Most often, patients are the focus of a diagnosis, and the people around them are almost forgotten. The…

You’re chronically ill, super anxious, crazy shy, unconfident, and have no interviewing skills. To some, that recipe may sound like a terrible concoction to start a podcast. However, for me, I knew it was something I had to do. I had to share…

For a comprehensive support app developed for multiple sclerosis (MS) patients, RxMx and Roche have won the Patient Engagement Innovation Award from Medtech Breakthrough. The fourth annual awards program recognized top health and medical technology products and companies. Healthcare company RxMx and pharmaceutical company Roche collaborated to produce…

The Multiple Sclerosis Society of Canada is launching a virtual effort that seeks to connect multiple sclerosis (MS) communities across the country and raise funds for research in observance of Multiple Sclerosis Awareness Month in Canada. As part of the initiative, called #WeChallengeMS, Canadian…

FFF Enterprises and Bionews Services, publisher of this website, announced today that both rare and orphan disease advocates are joining forces to provide patients with resources to help them connect as a community and continue to manage their health during this time when many are finding themselves alone.

With March being Multiple Sclerosis Awareness Month, I got to thinking: What have I done — or what do I do — to raise MS awareness? I’ll count some ways to fly the orange flag. Maybe you’ll find inspiration. Communications I’m a writer, so obviously I use my skill…

A little over 20 years ago, Montel Williams learned once and for all that he had multiple sclerosis (MS). But that determination should have happened long before then, said the well-known TV personality — who’s made fighting the neurodegenerative disease his life’s mission. Williams, 63, was the star attraction…

Like many people with multiple sclerosis, my symptoms are mostly invisible. Many days, fatigue overwhelms me and I have pain somewhere. I tingle all over. I have weird sensory symptoms such as the feeling of water…

The National Multiple Sclerosis Society (NMSS) is marking Multiple Sclerosis Awareness Week, March 8-14, by sharing patients’ stories and encouraging participation in fundraising and advocacy efforts. Each year, a week is set aside to heighten awareness of multiple sclerosis (MS), a neurodegenerative disorder that affects nearly 1 million people in…

In recognition of Rare Disease Day Feb. 29, Bionews Services launched a social media campaign last month asking patients to describe what makes them rare. Running Feb. 7–29, the #WhatMakesMeRare campaign was aimed at uplifting people with rare diseases by encouraging them to share their stories and perspectives. The…

I recently interviewed filmmaker Celestine Fraser on my podcast. Fraser produced a documentary about chronic illness called “ill, actually.” We touched on some interesting topics, including how people with chronic illnesses use social media. The documentary interviews three people with…

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 “My Service Dog Changed My Life” from July 17, 2018.  One of my…

Tri Global Energy is again joining with fellow Texans for Bike MS, the nationwide fundraising cycling series of the National Multiple Sclerosis Society (NMSS). Team Wind Force will saddle up May 16-17 for Bike MS Round-Up Ride 2020. Now in its fifth year, the Dallas area team has…

Kevin Schaefer hadn’t been in an airport since he was 4 years old, so he had been looking forward to flying from his home in Cary, North Carolina, to Anaheim, California, in June for the 2019 Cure SMA Conference. As it turned out, his experience didn’t go as expected.

To those who judge me for using my disabled parking permit when I seemingly look “healthy and well,” please consider your words. There are people out there who “call out” others who they think are “abusing the system” and taking up an accessible space when it looks like they don’t…

Leadership changes at the Accelerated Cure Project (ACP) for Multiple Sclerosis aim to enhance the nonprofit patient-founded organization’s research focus. Robert McBurney has stepped down as president and CEO after eight years to become ACP’s first chief research officer. He will continue in the position of research lead for the…

When Jon Strum began his “RealTalk MS” podcast two years ago, he did not imagine he soon would have thousands of regular listeners in more than 60 countries. Now, Strum’s popular online audio series has a new partner: the National Multiple Sclerosis Society (NMSS). Strum uses his weekly…

There is a sizable gap between advancements in treatment for multiple sclerosis (MS) and their regulatory approval, which is a circumstance that necessitates increased  advocacy on a global scale. This concern was a major topic of conversation recently at the XXIV World Congress of Neurology (WCN 2019)…

I remember a time without televised ads promoting medication. We had access to information through our physician or a card catalog. Pharmaceuticals are now a mainstay on our airwaves. And although prevalent, these ads previously had been inapplicable to me. Until now. An ad for Ocrevus (ocrelizumab) aired a…

The National Multiple Sclerosis Society has criticized Biogen for the $88,000 yearly list price it placed on Vumerity (diroximel fumarate), the newly approved oral disease-modifying treatment (DMT) for relapsing multiple sclerosis. That criticism extends to repeated price increases with Tecfidera (dimethyl fumarate), Biogen’s similar oral DMT for…

By 2017, over 50,000 people with disabilities in the U.K. had lost their accessible vehicles due to reassessments required by Personal Independence Payment (PIP), a financial assistance program for people with disabilities. Motability Scheme is a program that provides financial assistance to help people lease an accessible…

Why is my body betraying me? As an advocate and a person with chronic illness, this question surfaces often. Many people with chronic illness feel that their body has failed them. I can understand the reasoning behind the question. At times, the very things many take for granted are the…