advocacy

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. aHSCT involves…

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…

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…

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…

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…

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)…

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…

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…

The U.S. Federal Trade Commission (FTC) sent warning letters to three companies that sell cannabis-based products containing cannabidiol (CBD), cautioning them that making unsubstantiated claims about the health benefits of CBD could lead to legal action. The agency “urges the companies to review all claims made for their…

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 National Health Service (NHS) England announced an initiative that aims to speed diagnoses and ensure better all-around care for people with progressive neurological conditions like multiple sclerosis (MS), Parkinson’s disease, and motor neuron disease (MND). Experts at NHS England, as part of the NHS RightCare…

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…