advocacy

Quality healthcare is imperative when living with a disease such as multiple sclerosis. While the operational definition of “quality” varies from person to person, I find it to be contingent on the same variable: the doctor/patient relationship. A relationship between a doctor and a patient is symbiotic. Any healthcare…

Julie Roberts, a country music singer and multiple sclerosis (MS) patient advocate, will perform at the upcoming Consortium of Multiple Sclerosis Centers (CMSC)’s annual meeting, the association announced Roberts, diagnosed with MS while making her second recording in 2005, will also attend CMSC sessions to learn more about…

Improving financial support programs for those living with multiple sclerosis (MS) would increase workforce participation and boost economic activity, concluded a report published by the Conference Board of Canada in March, which was Multiple Sclerosis Awareness Month. Today, about 100,000 Canadians live with MS, making Canada one of…

In the first year after being diagnosed with multiple sclerosis (MS) in 1997, Ann Borsellino basically withdrew from life, rarely even leaving her bedroom. Knowing little about the disease, she assumed its relapses would soon rob her of any control over her body. They didn’t, and now Borsellino is involved with…

The United Spinal Association will hold a webinar this week to seek ideas for making air travel better for wheelchair users, including multiple sclerosis patients. One focus of the event will be the problems wheelchair users have encountered at airports. Another will be bills in the U.S. House and Senate…

The American Brain Foundation has started a crowdfunding campaign to support research that could lead to treatments for multiple sclerosis and other autoimmune and inflammatory diseases. Foundation officials said the funds will help facilitate the work of Steffen Jung, head of the immunology department at the Weizmann Institute of Science in Israel.

While at the ACTRIMS Forum 2018 (which stands for Americas Committee for Treatment and Research in MS), I was surprised to see a colorful display of orange-and-teal colored sock monkeys mixed in with the pharmaceutical company and advocacy organization displays. It was the display booth for Oscar…

I fell out of sight in February, thanks to a case of the flu. Influenza B and its lingering side effects took me out of action from almost everything except sleeping, but I’ll save those details for another story. As I come out of my flu-induced fog, I see…

The National Multiple Sclerosis Society gave its Impact Award to Bianca Weinstock-Guttman, MD, for her research and patient care in multiple sclerosis (MS). According to the society, the award is intended for “a business or individual whose leadership helps ensure those with MS live their best lives.” Weinstock-Guttman…

My knee was jerking the other day. It wasn’t my MS, it was my knee-jerk reaction to the passage in the U.S. House of Representatives of a bill called the ADA Education and Reform Act of 2017 (HR 620). Before the vote, people with disabilities demonstrated inside the…

Several years ago, I tried to get my insurance company to approve a functional electronic stimulator (FES). It’s a durable medical device that significantly improved my left foot drop. My request was well-supported by documentation from my neurologist and the physical therapist who was evaluating me for…

It’s nice when a negative experience can be turned into one that’s positive. I think that’s the result for a wheelchair-using MS patient following a problem she had at the Mall of America a few days before the Super Bowl. For those not familiar with the Mall of America,…

The Invisible Disabilities Association (IDA) has created a video to raise awareness about the hardships of disabilities that are real but not readily evident to passersby, and often complicate life for people with multiple sclerosis (MS) and other disorders. The video, called “I Am Invisible No More,” features…

The National Multiple Sclerosis Society has endorsed the North American Registry for Care and Research in Multiple Sclerosis, a collaborative effort involving other multiple sclerosis registries, clinicians, researchers and patients in the U.S. and parts of Canada. NARCRMS is a public-private partnership, bringing together academia, industry, governmental agencies, and nonprofit organizations with an interest in MS. It operates under the auspices of the Consortium of Multiple Sclerosis Centers. It consists of a database of clinical records and patient-centered outcomes, providing clinicians and scientists with a greater and more integrated ability to track the incidence, prevalence and course of MS. Like many registries, NARCRMS includes data collected by physicians, like neuroimaging scans, genetic markers, cognitive assessments and specimen collection, and testing for identification of biomarkers of disease progression. It also adds patient-reported outcomes focused on disease challenges and impacts on daily life. Its goal is to improve the understanding of MS, facilitate multi-level care, and aid in recruiting patients into clinical trials. NARCRMS is the first open-source database to connect MS centers across North America to regional databases by state, region and zip code. To date, NARCRMS has recruited 10 centers, with another three in the process of coming aboard, and has enrolled 113 patients. The registry builds on North American Research Committee on Multiple Sclerosis (NARCOMS), the oldest patient-driven registry in the U.S. using patient experiences to advance MS clinical care and life quality. NARCOMS was created in 1993 by the CMSC. More than 37,500 people had joined the registry as of 2015. Researchers used NARCOMS data on 2014 to report on outcomes in switching treatments, therapy effectiveness, disease progression, co-existing conditions, and other topics that help understand the MS experience.

Though I don’t always use it, I take my cane with me every time we go shopping. I can still shuffle to the cart pickup and drop-off without it and the cart doubles as my walker. Canes can be clunky, aren’t easily stored, and I simply…

The National Organization for Rare Disorders (NORD) says it’s “disappointed and dismayed” after the House of Representatives voted 227-205 last week to repeal the Orphan Drug Tax Credit as part of a U.S. tax reform package. A similar package before the Senate Finance Committee does not repeal the credit…

For those of us in the workforce, our MS can sometimes make a workday challenging. The Americans with Disabilities Act allows for an employee to request reasonable accommodations from their employer. Included in the act are three broad accommodation categories. One focuses on the hiring process, and…

Have you heard of a healthcare “reform” proposal in the U.S. Senate called “Graham-Cassidy?” If not, take heed because Graham-Cassidy is a last-ditch effort by Republicans on Capitol Hill, led by Senators Lindsay Graham (SC), Bill Cassidy (LA), Dean Heller (NV), and Ron Johnson (WI), to limit healthcare…

You’ve just “biked for MS” or your friends have just “walked for MS” and they’ve collected a lot of pledges. Maybe you sent out letters to your friends asking them to donate a little cash to help find a cure for this disease that has impacted our lives.

Beth Kantor, 42, now knows what it really means to get down in the dirt. For the past four years, she’s volunteered as a first-aid assistant at the annual Twin Cities MuckFest, a fundraising event that the National Multiple Sclerosis Society organized in suburban Minneapolis. But this year, Kantor decided it…

Advocacy comes in many forms, and recently I wrote about what advocacy by individuals might look like. The other type of advocacy we have going for those of us with multiple sclerosis is the work done on our behalf by a large number of nonprofit organizations. Let…

Do you ever stop to wonder about the people who write these great columns for Multiple Sclerosis News Today? I have the honor of knowing several of them via telephone conversations and even occasional in-person meetings. You can tell by looking at our bios that we are a…

MSWorld, one of the world’s largest patient-run organizations supporting people with multiple sclerosis (MS), plans its first patient education event, MSWorld Talks, in Pittsburgh on Aug. 14. The all-day conference is free and open to all those in the Pittsburgh area who live with MS, as well as their family…

I recently spent time at the annual meeting of the Drug Information Association (DIA), listening to presentations and talking with industry representatives about the multiple sclerosis community’s needs. DIA is a nonprofit association that has been around more than 50 years. Their primary interest is the development of healthcare…

I have written multiple iterations of this column trying to keep pace with the disastrous healthcare bills being presented first in the U.S. House of Representatives and now the Senate. But I can’t keep up with them. There are just too many and…

Christine Sinclair, captain of Canadian women’s soccer teams that won two Olympic bronze medals, has joined the fight against multiple sclerosis by supporting A&W’s Burgers to Beat MS campaign. The Multiple Sclerosis Society of Canada said Sinclair will visit A&W restaurants across Canada on Aug. 23 and 24 to raise funds and awareness of MS. Sinclair is close to the cause because her mother, Sandi, who coached her soccer teams when Christine was a child, has the disease. Sandi is one of about 100,000 people with MS in Canada, which has the highest rate of the disease in the world. "I have become a part of this to educate the public and support finding a cure," Sinclair said in a press release. "I don't want other people to go through what my family has gone through, with the difficulties my mom faces every day." Sandi Sinclair now lives in a long-term care facility. Christine decided to help the MS Society of Canada after her mother's mobility become more and more limited, and she finally ended up in a wheelchair. "Each year we look forward to our partnership with A&W," said Valerie Hussey, chair of the MS Society of Canada's board of directors. "We are excited to have Christine, a Canadian icon, share her personal connection to MS and help raise awareness for our cause." Burgers to Beat MS, now in its ninth year, has raised nearly $10 million for the cause. It is the country's largest annual fundraiser benefiting the MS Society of Canada. From this week on, about 900 A&W restaurants nationwide will be helping the society raise funds. Supporters will be able to donate by rounding up their bill at the register, by buying $1, $2 or $5 paper cutouts, or by dropping cash in donation mugs. Supporters will also be able to contribute online. The campaign will end with a special day on Thursday, Aug. 24, when those who run the restaurants double every donation made from the sale of Teen Burgers. This means the donation on each burger will go from $1 to $2.

GeneFo, an online multiple sclerosis (MS) community that offers support, advice and educational resources to patients, will conduct a free webinar July 26 for those interested in knowing more about how MS affects sex and intimacy. The webinar, hosted by renowned MS expert Dr. Tuppy Owens, follows a GeneFo survey showing that sex…

Donna Edwards has multiple sclerosis. Edwards is currently unemployed. But a year ago she had a well-paying job with excellent medical benefits. Edwards was a member of the U.S. House of Representatives. In fact, she represented the congressional district where I once lived. (Courtesy of former U.S.

My disability rights activism includes housing issues. Affordable housing gets a lot of attention (no solutions, but attention, at least). Accessible housing, not so much. Like the invisible symptoms of multiple sclerosis, the need for affordable ACCESSIBLE housing remains hidden. Accessibility needs to be part of the dialogue I…

Shared decision-making between patients and their doctors and healthcare providers was considered a critical step in the process of treating multiple sclerosis (MS), according to an article published in the journal Practical Neurology. The article “Shared Decision-making in Multiple Sclerosis Management” was written by Amy Perrin Ross, a board-certified…