advocacy

The National Multiple Sclerosis Society and a dozen other advocacy groups have banded together to support the Air Carrier Access Amendments Act of 2017, a bill seeking to strengthen the rights of airline passengers and close service gaps often faced by patients with disabilities, including those with multiple sclerosis (MS).

The British fundraising group The October Club and The MS Trust, a U.K. multiple sclerosis research and support organization, have announced an ambitious plan to potentially help thousands of advanced MS patients in need of services. Composed of people working in the financial equity industry in London, The October Club raises money for a different charity each year through…

I’ve just been reminded, as someone with multiple sclerosis, how fortunate I am to have good medical insurance. Unlike most other countries, where medical care is a right, in the U.S. that care is a privilege. Here the quality of care and too often the availability of that…

People with multiple sclerosis (MS) and others with spinal cord injuries and disorders will speak at the United Spinal Association’s upcoming 6th Annual Roll on Capitol Hill, which takes place June 11-14 in Washington, D.C. Andrea Dalzell, Ms. Wheelchair New York 2015, will be among those advocating for greater access to complex rehabilitation technology.

I now introduce myself as a disability rights activist. I began to pay attention to local politics and related activities last fall. Our city redevelopment plans are charging along, without any city staffer to pay attention to the needs of the disabled. As such, I’ve been making the…

I knew it was only a matter of time before my MS neurologist would have MS PATHS available to collect clinical data from people who have agreed to participate. MS PATHS is an information- and biological sample-gathering clinical study from Biogen, the leading manufacturer of multiple sclerosis disease-modifying…

Genentech, Novartis and Sanofi Genzyme are sponsoring this year’s Walk MS, an annual event to raise funds for multiple sclerosis (MS) and the National Multiple Sclerosis Society (NMSS). Genentech, a division of Roche, returns as an MS Walk sponsor for the second year and will promote the “MS Voice”…

Caleb Taylor, a second-year University of Kentucky Law School student, has chosen a challenging way to raise awareness and raise funds for multiple sclerosis, a disease that changed his family’s life forever when it struck his mother. Taylor will pedal across America as part of the Bike the US for…

The ABLE Act improvement bills were reintroduced into Congress this week and referred to committee on April 4. The bills died in committee in 2016 before an active campaign could garner enough attention in that election year. I urge all readers in the U.S. to call your representatives and senators to encourage them to…

Carol Hardaway was diagnosed with multiple sclerosis (MS) in 1990. After years of enduring relapses that brought episodes of complete blindness, numbness, tingling, debilitating fatigue, and short-term memory loss, the longtime resident of Texas — a state which offers Medicaid only to specific categories like low-income families, pregnant women, and…

The potential approval of Ocrevus (ocrelizumab) this month supports the idea that, someday, a world free of multiple sclerosis (MS) is possible, according to Dr. Tim Coetzee, the National Multiple Sclerosis Society’s chief advocacy, services and research officer. While Coetzee — and the society he represents — realize the potential of…

Here is a transcript of Multiple Sclerosis News Today‘s interview with Dr. Tim Coetzee — chief advocacy, services and research officer for the National Multiple Sclerosis Society — about the importance of the U.S. Food and Drug Administration (FDA)’s awaited decision on Ocrevus (ocrelizumab), and the other ongoing research. Tim…

MS Views and News, a non-profit multiple sclerosis (MS) advocacy organization, will host its second annual Champions Tackling MS Gala on April 22, with money raised going to support live educational events, community resources, and services intended to help improve the quality of life for people with MS. The Saturday event at the…

This was an eventful week. I was not feeling well and ultimately ended up in the hospital for a couple of days. I had severe neck pain that radiated to my shoulder and arm. In addition, I woke up one morning with severe chest pains. I couldn’t determine whether…

The practice of collecting data about how we MS patients go about living our lives, and then using that data to improve our patient care, seems to be gathering steam. In the European Union a project called Real World Evidence Data, or RWE, is working outside of the…

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…

Here’s my Pick of the Week’s News, as published in Multiple Sclerosis News Today. MS Organizations Join #MySupportHero Initiative to Help Patients Salute Those Who Care Oh, I can see me fitting in well here. To see what I mean, just take a look at two previous…

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…

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,…

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…

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 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…

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…