advocacy

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…

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,…

Britain’s Multiple Sclerosis Trust is asking patients to help them get the National Health Service to cover Ocrevus (ocrelizumab) as a treatment for primary progressive multiple sclerosis, or PPMS. The key step is trying to persuade the National Institute for Health and Care Excellence to recommend that the health service…

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…

Last week was Invisible Illness Awareness Week, which ran from Oct 14-20. Awareness weeks are designed to bring attention to certain conditions, issues and situations. They are directed at creating consciousness and disseminating information. Sadly, invisible illness is a subject that needs much more attention. Those of…

Those of us who have MS know that our disease can be invisible. We don’t always stumble when we walk. We don’t always use some sort of an assistive device that would alert people to our illness. So what we often get from those who don’t know better are those…

April and Bernie Hester are busy planning their second 500-mile thru-hike of South Carolina's Palmetto Trail, which they will begin on Oct. 1 to raise awareness for multiple sclerosis and funds for the National MS Society. Thousands of people hike parts of the trail every year, but few do the entire 500-mile hike, said Suzette Anderson, of the Palmetto Conservation Foundation (PCF), an organization dedicated to conserving South Carolina's natural and cultural resources. The couple's "Finish MS Hike" is the second time they'll be hiking the full trail this year. In April they started hiking from the sea and 66 days later completed the trail in the mountains. This time they'll start in the mountains and end at the sea. The couple will traverse over mountains, on trails, through cities, and on roadways. April, who has MS, is hoping that her efforts will bring much-needed awareness to the condition and that the pair can reach their goal of raising $100,000 for MS research toward a cure. Their effort, combined with the debilitating effects of MS, are among the reasons why April and Bernie Hester were recognized as trail ambassadors by the PCF. The couple will post regular updates on their “Finish MS Hike” blog and Instagram account, to allow people to follow their adventures, read about their journey, and gain insight as they face and conquer challenges along the way. The couple has already written a few entries to keep their audience informed. The Palmetto is the longest trail and largest trail construction project in South Carolina. Today, the trail crosses the state from Walhalla in the mountains of Oconee County to Awendaw on the coast in Charleston County. Another 150 miles in the Midlands and Upstate remain to be acquired and constructed. To help raise money to "Finish the Trail," the PCF and RJ Rockers Brewing Company have combined their passions for trekking and craft beer to create Palmetto Trail Pale Ale. A portion of sales goes to support and finish the Palmetto Trail. You can buy Palmetto Trail Pale Ale at any of the following locations: RJ Rockers Brewery, Craft and Draft, Texas Roadhouse, Thirsty Fellow, Flying Saucer, Capital City Club, Triangle Char+Bar, Bohemian Bull, Publico Kitchen & Tap.

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…

Multiple sclerosis damages human brains, so MS researchers often study mice brains. How can multiple sclerosis be cured or prevented without studies of human brains? Researchers need the anatomical bequests of MS brains. Harvard Brain Tissue Resource Center Harvard University specifically collects and studies brains (and brain tissue),…

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…

Accessible housing is not optional for people with disabilities. Poverty and disability too often combine for too many people. It is one thing to know this double whammy exists intellectually. To see the impact in a person packs a visceral punch that cannot be denied. Think of how profoundly…

If you’ve followed my writing, you already know I am committed to advancing patient-centered research and care. I am the lead patient representative and co-principal investigator for iConquerMS. One of the main goals of iConquerMS is to elevate the voice of people with MS into research. How do…

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…

Advertising for stem cell therapies not supported by clinical research — often made directly to patients and sometimes promoted as a "cure" for diseases like multiple sclerosis or Parkinson's — is a growing problem that needs to be addressed and regulated, a team of leading experts say, calling such "stem cell tourism" potentially unsafe. Stem cell tourism is the unflattering name given to the practice of encouraging patients to travel outside their home country to undergo such treatment, typicaly at a private clinic. The article, titled "Marketing of unproven stem cell–based interventions: A call to action" and recently published in the journal Science Translational Medicine, was co-authored by scientists with universities and hospitals in the U.S., Canada, U.K., Belgium, Italy, Japan, and Australia. It focuses on the global problem of the commercial promotion of stem cell therapies and ongoing resistance to regulatory efforts. Its authors suggest that a coordinated approach, at national and international levels, be focused on "engagement, harmonization, and enforcement in order to reduce risks associated with direct-to-consumer marketing of unproven stem cell treatments." Treatments involving stem cell transplants are now being offered by hundreds of medical institutions worldwide, claiming efficacy in repairing tissue damaged by degenerative disorders like MS, even though those claim often lack or are supported by little evidence . They also noted that the continued availability of these treatments undermines the development of rigorously tested therapies, and potentially can endanger a patient's life. The researchers emphasize that tighter regulations on stem cell therapy advertising are needed, especially regarding potential clinical benefits. They support the establishment of international regulatory standards for the manufacture and testing of human cell and tissue-based therapies. "Many patients feel that potential cures are being held back by red tape and lengthy approval processes. Although this can be frustrating, these procedures are there to protect patients from undergoing needless treatments that could put their lives at risk," Sarah Chan, a University of Edinburgh Chancellor’s Fellow and report co-author, said in a news release. Chan and her colleagues are also calling for the World Health Organization to offer guidance on responsible clinical use of cells and tissues, as it does for medicines and medical devices. "Stem cell therapies hold a lot of promise," Chan said, "but we need rigorous clinical trials and regulatory processes to determine whether a proposed treatment is safe, effective and better than existing treatments." According to the release, the report and its recommendations followed the death of two children at a German clinic in 2010. The clinic has since been shut down. Certain stem cell therapies — mostly involving blood and skin stem cells – have undergone rigorous testing in clinical trials, the researchers noted. A number of these resulted in aproved treatments for certain blood cancers, and to grow skin grafts for patients with severe burns. Information about the current status of stem cell research and potential uses of stem cell therapies is available on the website EuroStemCell.

The Multiple Sclerosis Association of America (MSAA) has released three new resources for people with multiple sclerosis (MS), available for free as both printed and online versions on MSAA’s website. According to a press release, the three new resources are: A cover story in the latest edition of MSAA’s…