advocacy

This year’s annual Walk MS event will bring cumulative fundraising for multiple sclerosis (MS) and the National Multiple Sclerosis Society (NMSS) since 1988 to more than $1 billion, say organizers. “Walk MS is a joyous gathering with a wonderful ‘we’re in this together’ feeling,” NMSS President and CEO Cyndi Zagieboylo said…

As Republicans in Congress prepare to repeal and replace the Affordable Care Act (ACA), the National Multiple Sclerosis Society and 10 other nonpartisan patient groups are urging lawmakers in Washington to keep health insurance affordable, accessible, adequate and understandable for all Americans. The 11 organizations will evaluate all proposed changes to the…

A number of multiple sclerosis organizations have joined Biogen in the second year of the #MySupportHero initiative. The social media campaign is a way for people with multiple sclerosis (MS)  to thank those who give them the care,  encouragement, attention, and strength they need. The initiative runs through the end of March, which…

I was in Washington, D.C. for a meeting, and had the opportunity to dine with some fellow multiple sclerosis advocates. I thought it might be of interest to get their take on the most pressing issues of 2017 for people living with MS. I wasn’t sure what to…

On a Monday in July, the Multiple Sclerosis Association of America (MSAA) gave Kathy, who loves to hike in the woods, a cooling vest that reduces heat stress — a common issue for people with multiple sclerosis (MS). On a Wednesday in October, the nonprofit funded an MRI for Sarah,…

People with multiple sclerosis (MS) and other chronic diseases value the Affordable Care Act (ACA, also known as Obamacare) more than the general public, concludes a poll conducted by PatientsLikeMe. These patients are also less inclined to repeal Obamacare, and they are more likely to believe Obamacare needs few changes to…

Lost in the delights of the library; 10 minutes over meter limit Yes, they chalk-marked the tires and I got a ticket. I was furious. Once again,…

Perhaps the most famous MS advocate today isn’t a patient, but the daughter of one. Author J.K. Rowling lost her mother to multiple sclerosis in 1990, something she describes as “an enormous shock.” In order to help fight and defeat this disease, she donated £10m to found…

One of my sisters called to let me know that CNN was doing live coverage of the Women’s March that was taking place in all 50 U.S. states, as well as many other countries. While we talked, one of the speakers came on and observed that the issues facing…

After my recent insurance experience, which I share here, I never again will wonder why some people give up on claiming their medical benefits. I have received Botox treatment for spasticity of my quad and hamstring muscles. This is an FDA-approved use, but to get this treatment there has…

Nominations are being sought for individuals and groups for the U.K.’s MS Society Awards 2017. Organizers say the awards will recognize the stars of the MS community and their contributions during 2016. While not wishing to denigrate…

When the Americans with Disabilities Act was signed into law in 1990, there seemingly were as many opponents as there were proponents. All these years later, the standards and expectations of that landmark legislation have become second-nature in mainstream America. Concerns about costs and consequences were…

  When thinking about multiple sclerosis (MS), it’s important to remember there are four distinct types of the disease. Most of you well know this, so I’ll just mention them here: relapsing-remitting MS (RRMS); secondary progressive MS; primary progressive MS, and clinically isolated syndrome. (Anyone needing or wishing more information…

There are very few days left this year. But in order for the amendments to the ABLE Act not to die in committee, they need to be brought to the floor for a vote. (If you need a refresher on the ABLE Act and pending amendments, I wrote about them in…

The Multiple Sclerosis Foundation, which is celebrating its 30th anniversary this year, has launched a new website to make access to information and services easier, and a newly designed MS Focus magazine. MS Focus magazine is the foundation’s publication dedicated to common challenges, solutions, and stories of the…

“Round, round, get around. I get around.” I was humming that classic 1960s Beach Boys tune this morning (yes, I’m that old) as I thought about a feature story that I saw on one of the TV networks recently. The story profiled Cory Lee. Cory has spinal muscular…

The British government announced on Oct. 31 that a new Personal Support Package will be available for people with health disabilities, such as multiple sclerosis (MS), ensuring they receive personalized health and employment support. A Green Paper – a government document for consultation – is available online to open…

Several people have asked me why I choose to publicly share my multiple sclerosis (MS) diagnosis and experiences with chronic illnesses. Some ask in admiration, stating how they wish they were comfortable enough to also do so, while others ask in judgment and condemnation. I have been told that people…

The National Disability Institute manages the website www.ablenrc.org that has good information. I watched all the “webinars” and found them informative. A new one is going to be broadcast Nov. 15, 1:00-2:30 CST  (event number 660 742 928),  and likely will be archived with the rest of the webinars…

ABLE Accounts and Amendments In my previous column, I introduced the exciting new program for people with disabilities, called the ABLE Act (Achieving a Better Life Experience Act). The final bill, signed into law in 2014, deviated substantially from the original proposal and that needs to…

Getting more African-Americans and other minority groups to take part in clinical research into treatments for multiple sclerosis (MS), and identifying and tackling continuing disparities in efforts that affect patient care, will be the focus of a project led by the nonprofit group Accelerated Cure Project for Multiple Sclerosis (ACP) and supported…

The 2016 Fritz Krauth Award was given by the Paralyzed Veterans of America to Dr. Sarah Moyon, a researcher focusing on ways to understand and treat symptoms of diseases like multiple sclerosis (MS) and those of the spine. The award ceremony took place at Cleveland, Ohio, at the bi-annual board meeting of…

The National Multiple Sclerosis Society announced that is investing more than $10.5 million to support an anticipated 42 new research projects into multiple sclerosis (MS), part of its commitment to scientific efforts aimed at stopping MS, restoring lost function to patients, and, ultimately, ending the disease forever. The dedicated funding is part of a projected society investment of…

Disability from multiple sclerosis develops, on average, within 10 years of diagnosis. Financial catastrophe was often the consequence, until Congress passed the Achieving a Better Life Experience Act (ABLE Act) — signed into law on Dec. 19, 2014, by President Obama. This act allows you or anyone to…

Singer-songwriter Lori Jenaire is supporting the American Autoimmune Related Diseases Association (AARDA) #25for25 fundraising campaign with the release of her Top Five Billboard Hot Singles Sales debut “As You Are,” featuring Patrice Rushen. The song is a remake of the 1978 Pharoah Sanders’ R&B soul classic, which in its original version featured Phyllis…

The Multiple Sclerosis (MS) Trust is expressing its disappointment at the recent committee decision of the National Institute for Health and Care Excellence (NICE) to not recommend Zinbryta (daclizumab) be made available as a therapy to MS patients using the public health system in England and Wales. NICE’s preliminary recommendation was based on a review of…

The National Institute for Health and Care Excellence (NICE), the health authority for England and Wales, has decided not to recommend Zinbryta (daclizumab) be made available to multiple sclerosis (MS) patients through the country’s health service. The decision came in a first stage of the drug’s review process, and NICE is welcoming…

The National Multiple Sclerosis Society has launched an initiative, called Make MS Medications Accessible, calling for change in the pricing of multiple sclerosis (MS) medications in the U.S., which the group said need to be more affordable, and ways of acquiring them more simple and transparent. The initiative asks leaders of all…

You don’t see people with disabilities very often in television ads.  And when you do, the person with the handicap is usually playing a secondary role or the ad uses the disabled person for an emotional appeal.  It’s not real-life.  It’s not us. So, a tip of my hat to…

In a session titled “Challenges for care and research in MS outside Europe and North America” at the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) 2016 Congress Sept. 14-17 in London, researchers from Latin America shared the obstacles of scientists and multiple sclerosis (MS) patients in the…