advocacy

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…

A short film produced for Hispanic/Latinx people who live with multiple sclerosis (MS) improved patients’ understanding of the condition and the effectiveness of treatment, a study found.  “Health communication interventions, like film, have been shown to be effective tools in promoting positive attitudes…

The Multiple Sclerosis Society of Canada‘s (MSSC) MS Walk fundraiser is still on for this month — May is MS Awareness Month in Canada — although in an altered form due to the pandemic. The annual nationwide community-driven event raises funds and MS awareness to help battle the neurodegenerative…

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)…

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…

The pandemic notwithstanding, MS Run the US has fielded 18 runners — including eight with multiple sclerosis (MS) — to traverse the United States to raise awareness and funds to support MS research and to aid those living with disability caused by the neurodegenerative disease. The organization’s Ultra…

It’s nearly the end of MS Awareness Month.  Previously, I spoke about helping out with the 31 Days of MS initiative by MS News Today and its parent company, Bionews, to help raise awareness of MS. As…

Photo courtesy of Colin Hirst Day 25 of 31 This is Colin Hirst’s story: Hello, I’m Colin and I have relapsing-remitting MS. Simply put, MS is an auto-immune disease that makes your body’s own cells break down the myelin around your nerves because it believes they are…

Photo courtesy of Amy Thompson Day 18 of 31 This is Amy Thompson’s story: In April 2018, just after my 21st birthday, I was diagnosed with relapsing-remitting MS. My whole world was turned upside down and I couldn’t find anyone I could relate to. That…

Regardless of race or ethnicity, people with multiple sclerosis (MS) agree that clinical studies are important and show a willingness and interest in being participants, a primarily U.S. survey found. Those belonging to minority groups, however, are often deterred from taking part in MS studies for reasons that range…

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.

The National Multiple Sclerosis Society has joined forces with the diabetes-focused JDRF and the Lupus Research Alliance to fund research looking at common underlying mechanisms of autoimmune disease. Called “Decoding Immune-Mediated Diseases – Novel Approaches for Therapeutic Insights,” the new joint grant program is meant to stimulate…

Recently, I was given the exceptional honor of finding stories for MS News Today‘s upcoming “31 days of MS“ initiative. I loved the challenge, and used it as an opportunity to catch up with friends I’ve met over the years while doing…

This is disturbing and, unfortunately, not surprising. More than 50% of people with advanced multiple sclerosis reported they’ve been mistreated by a family member or friend who cares for them, according to the results of a survey published last September by researchers at the University of California, Riverside. Much…

The MS Society in the U.K. is hoping to raise £3.7 million ($5.2 million) to fund research aimed at developing new treatments for multiple sclerosis (MS). The funds will support research at the Society’s Centers of Excellence in Edinburgh and Cambridge over five years. “Our top priority…

If you’re having trouble paying for your MS medications, you’re not alone. I regularly see social media posts from people whose insurance has changed or whose insurance company has suddenly dropped a medication from its formulary (the list of meds it will pay for). Or, it has decided that you…

Rare – adjective Not occurring very often; uncommon Unusually good or remarkable On Feb. 28, the world will celebrate international Rare Disease Day. A rare disease is one that affects fewer than 200,000 people in the U.S. Almost 7,000 rare or orphan diseases meet the criteria to be considered…

Lyfebulb and Bristol Myers Squibb have announced the 10 finalists who will compete virtually for a $25,000 award to support the development of innovations that address unmet needs in multiple sclerosis (MS). The…

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…

An online auction event supporting the National Multiple Sclerosis Society  is is running through Feb. 13 on Facebook. Organized by The Dyeing Arts group, the fundraising auction features tie dye and handcraft art from several online communities. The event arose from a partnership between Lighthouse Outdoor Products…

The advice issued Tuesday by the U.S.-based National Multiple Sclerosis Society about COVID-19 vaccination couldn’t be clearer: “Get your vaccine as soon as it is available to you.” New MS Society guidelines say that the two COVID-19 vaccines currently available in the U.S., both of which use an mRNA…

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…

People with multiple sclerosis (MS) are encouraged to complete a survey aimed at understanding the experiences and expectations of those with a chronic illness who have either participated in a clinical trial or may in the future. The questionnaire was created by Kayentis, an electronic solutions company, in…

If I were using a wheelchair, would you question why I use a handicapped placard? Perhaps some (or all) of the condemnation I now receive would diminish. Maybe the notes left on my windshield would not be written. Perchance, it might temper some of the ugly comments spoken to my…

A new $100-million program aims to improve the diversity of participants in U.S. clinical trials with the ultimate goal of achieving better health outcomes and parity in care for underserved patient populations. The initiative seeks to extend the reach of clinical studies to underserved populations in the nation’s urban and rural…

The U.K.’s MS Trust has been awarded £50,000 (about $65,800) from the Coronavirus Community Support Fund — distributed by The National Lottery Community Fund — to further its “Supporting the MS community during Covid-19” project. Expected to run for six months, the project aims…

A $25,000 contest is inviting entrepreneurs who have multiple sclerosis (MS), or take care of someone with MS, to pitch their non-therapeutic solutions for people with the neurodegenerative disorder. The virtual Innovation Challenge, which takes place in March 2021, is part of a collaboration between patient-powered platform Lyfebulb…

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. aHSCT involves…