advocacy

Accessing healthcare providers knowledgeable about multiple sclerosis (MS) and being able to afford additional services to improve overall health were the most pressing healthcare concerns among Canadians with the condition, a survey suggests. “These findings provide healthcare planners prioritized concerns and a profile of [people with MS] that have…

“Burgers to Beat MS,” A&W Canada‘s annual fundraiser to support the MS Society of Canada and people with multiple sclerosis (MS), returns for its 13th year on Thursday, Aug. 19, aiming to raise over $1.5 million. Canada has one of the highest MS rates globally, with more than 90,000…

The Administration for Community Living (ACL) reaffirmed its support for the work of the National Paralysis Resource Center (PRC) in aiding people with paralysis — either due to multiple sclerosis (MS), accidents, or other disorders — with a five-year grant. Under a collaborative agreement, the PRC — operated…

Selma Blair, the TV and film actor who is also a multiple sclerosis (MS) advocate, will headline next month’s second International Virtual Summit for young adults with chronic and rare disorders. Hosted by Health Advocacy Summit (HAS), the Aug. 7-8 event will focus on empowerment, resources, and connection. The event is…

In an effort to make sure those with spinal cord injuries and disorders (SCI/D) are included in disability legislation, the United Spinal Association and some 200 advocates recently gathered virtually for this year’s “Roll on Capitol Hill.” The annual event, in which advocates met with lawmakers, gives organization members…

The National Multiple Sclerosis Society (NMSS) and iRacing are revving up for a special, July 31 motoring event to raise funds for the advocacy group. Called the iRacing 4 Hours at Charlotte Benefiting the National MS Society, the event will stream live at twitch.tv/iracing and marks iRacing’s…

Although multiple sclerosis (MS) affects many different races and ethnicities and may even be more aggressive in some of these patient populations, minority representation in MS clinical trials remains critically low. Black patients made up only a fraction of the total enrollment in large-scale Phase 3 trials for three…

Despite the current challenging times, the Multiple Sclerosis Association of America (MSAA) will host its annual Improving Lives Benefit this year, albeit virtually. The May 13 event will spotlight the nonprofit organization’s community efforts over more than 50 years. The affair will be hosted by multiple sclerosis (MS)…

What could the Academy Awards and COVID-19 possibly have in common for people with disabilities? Stay tuned, and I’ll tell you. First, the Academy Awards. The documentary “Crip Camp,” about a summer camp for young adults with disabilities, was up for an Oscar. Its co-director and co-star,…

The MS Trust welcomes adolescents with a connection to multiple sclerosis (MS) to join as reporters for its YouTube channel, the U.K. charity announced. Since its April 2018 launch, MSTV has featured young people with MS or those close to them sharing their experiences and first-hand knowledge through…

Photo courtesy of Heather Plummer-Goodrich Day 8 of 31 This is Heather Plummer-Goodrich’s story: Hello, my name is Heather. I am a nana of six beautiful grandchildren, a wife, and an ultra marathon runner. My mantra is: Never give up. Make adjustments, not excuses. Stay positive. When…

The National Multiple Sclerosis Society was among 56 nonprofit organizations chosen by Bristol Myers Squibb to share an $11 million award supporting projects that promote health equity and access to better care across ethnically and racially diverse and underserved communities in the U.S. Other awarded projects aim to promote diversity…

Photo courtesy of Svetlana Didorenko Day 3 of 31 This is Alex Twersky’s story: My name is Alex Twersky, and I have worked with Overcoming MS for more than seven years, applying my marketing and communications experience to advancing our vision.

Greg Smiley’s world changed abruptly in 2013. He was racing down a mountain road on an outback cycling trip in South Africa, when he hit an obstruction in the road and fell face-first onto the pavement, still clipped to his bike. The impact did considerable damage, including a potentially disfiguring…

Desi Harrison, a multiple sclerosis (MS) patient and president of the nonprofit MS Warriors for a Cause, has donated $700,000 to support the Ochsner Neuroscience Institute. The funds will help support research and care at the Ochsner Multiple Sclerosis Center to ensure that patients — like Harrison, who…

Is the United States a step closer to approving a form of stem cell transplantation as a treatment for multiple sclerosis? I believe it may be. That’s because the National Multiple Sclerosis Society (NMSS) has slightly changed its view of autologous hematopoietic stem cell transplantation, or aHSCT.

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…

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…

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…

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…

What will the future look like after this coronavirus craziness is over?  One thing is certain: The world can’t go back to being “normal.” This time in isolation has raised many issues and broken down so many barriers. Only now do…

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…

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…

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…

The Multiple Sclerosis Association of America (MSAA) is celebrating 50 years of work and dedication to improving the lives of people affected by multiple sclerosis (MS). Some changes are underway and initiatives being launched to commemorate this milestone. MSAA, a nonprofit organization founded in 1970, aims to provide…

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…