advocacy

You may not have heard of Judy Heumann, who died March 4 at the age of 75. Although she’s not directly connected to the multiple sclerosis (MS) community, you should know about her. Everyone who lives with a disability owes her a great deal. At just 18…

Have you ever heard of an ABLE savings account? I hadn’t until a couple weeks ago. The acronym stands for the Achieving a Better Life Experience Act, a law passed by the U.S. Congress in 2014. It created special savings accounts that allow disabled Americans, including people with…

“I Am Not The Doctor For You” is the title of a shocking new study published earlier this month in the journal Health Affairs. It reports that a number of doctors acknowledged being uncomfortable with treating people with a disability. The study was conceived of by Lisa…

“I thought it would never happen to me.” I’ve lost count of the number of times I’ve heard someone utter that phrase during my four decades in the news media. Last week, it happened to me. About three years ago, my wife and I bought a condo as a…

The newest recipients of the MS Australia incubator grants will seek novel ways to prevent and treat multiple sclerosis (MS) and explore the prevalence and incidence of the neurodegenerative disorder in different parts of the country. One scientist will use the funding to explore disease risk factors — and…

When Sarah Garcia was diagnosed with the relapsing-remitting form of multiple sclerosis (MS) at age 13, she didn’t know any other young Latino women with the neurodegenerative disorder. Garcia grew up in a tight-knit Hispanic community in Socorro, Texas, near El Paso. Most of her doctors were white,…

For the second year, the communications and software company Windstream is supporting the National Veterans Wheelchair Games, touted as the world’s largest annual wheelchair sports event exclusively for military veterans. The event is for all U.S. veterans with a spinal cord injury, amputation, multiple sclerosis (MS), or other…

The Multiple Sclerosis Society of Canada has opened MS Bike, an annual cycling event to raise awareness and funds for research and services that make the difference for the more than 90,000 Canadians living with multiple sclerosis (MS). Conducted in an entirely virtual format due to COVID-19 in 2020…

It’s a decision most of us with a chronic illness have to make sooner or later: When do we disclose our illness, and to whom, and how do we do it? Thirty-one-year-old Katie Coleman faced that decision not long ago. Coleman has stage 4 kidney cancer, and, in…

Formal consideration of legislation to establish a Canada Disability Benefit, with the expectation the measure will provide financial support to Canadians who live with multiple sclerosis (MS), is being praised by the Multiple Sclerosis Society of Canada. On June 2, the legislation was tabled in Canada’s House of…

Acknowledging advances in early detection of multiple sclerosis (MS), the Paralyzed Veterans of America (PVA) is broadening its membership and inviting all veterans with the progressive neurodegenerative disorder to join the nonprofit organization. Now, all veterans with MS are eligible for PVA membership and the same support available to…

In an unusual challenge, the Multiple Sclerosis Society of Canada is raising millions to promote multiple sclerosis (MS) research in that country by having supporters rappel off the roof of a downtown Toronto office building. More than 145 individuals across at least 36 teams are expected to participate in the…

Photo courtesy of Debbie Petrina Day 24 of 31 This is Debbie Petrina’s (debbiems.com) story: My story begins with a lesson I learned when I was a young girl. My Aunt Josie was very smart and a keen listener. She would ask provocative questions, frequently adding “use your…

Paralyzed Veterans of America (PVA) has formed a committee to better address the needs and interests of veterans with multiple sclerosis (MS), including help with obtaining care and disability benefits. The nonprofit PVA is the only congressionally chartered veterans organization working to assist and represent veterans with spinal…

The MS Society of Canada‘s virtual MS Read-a-Thon event has been extended to March 20, giving children and families throughout Canada extra time to enjoy reading while raising funds for the multiple sclerosis (MS) community. The event, which began Jan. 27, seeks to generate $110,000 to…

Photo courtesy of Kali Thomas Day 6 of 31 This is Kali Thomas’s story: Just a few months after my 21st birthday, in July 2013, I received a call that would change my life forever. I will never forget my doctor’s words: “I’m looking at your MRI, and I…

Photo courtesy of Laurie Lambert Day 4 of 31 This is Laurie Lambert’s story: The first thing I did was worry. When my friend told me of her MS diagnosis, I thought: she has always been the sharpest member of our circle — the one with the most expansive…

The MS Society of Canada is hosting its annual MS Read-a-Thon, a fundraiser that supports vital services to the multiple sclerosis (MS) community and to disease research while helping children discover the joys of reading. For a 45th year, the program invites children, individually or in teams…

It took some time for Tyler Campbell to truly accept he had relapsing-remitting multiple sclerosis. The San Diego State University running back had just finished his junior year in 2007 when his multiple sclerosis (MS) symptoms began. After an MRI confirmed the diagnosis, his neurologist cleared him to…

Under rules in the No Surprises Act, insured patients people in the U.S., including those with multiple sclerosis, should no longer receive unexpected medical bills for emergency care or for treatment from out-of-network providers at facilities in their network. The act, which became effective on Jan. 1, prohibits…

Donations to the Multiple Sclerosis Society of Canada through the end of this year will be double matched, meaning each donation will go three times as far in supporting Canadians with multiple sclerosis (MS) and in advancing research into the disease. All donations received until midnight on Dec.

The Multiple Sclerosis Society of Canada is urging that all provinces and territories in Canada offer COVID-19 booster vaccines to at-risk populations, including people who are moderately to severely immunocompromised and multiple sclerosis (MS) patients. In letters sent earlier this month, in collaboration with 11 other health charities, the…

I want to help in any way I possibly can. My lonely confusion in the early days after being diagnosed with aggressive relapsing-remitting multiple sclerosis was mentally and physically paralyzing. However, this column isn’t about how “Hurricane MS” battered my body. Instead, it’s about why I chose to…

This year’s Women Against Multiple Sclerosis (WAMS) Gala, which aims to raise funds for multiple sclerosis (MS) research, will take place Nov. 5. In order to keep participants safe in the setting of the ongoing pandemic, the MS Society of Canada‘s initiative will feature three events held virtually:…

The National Multiple Sclerosis Society supports the use of a patient-derived bone marrow transplant to treat people with very aggressive relapsing-remitting multiple sclerosis (RRMS) who responded poorly to disease-modifying therapies (DMTs). This position is in line with a recent set of society recommendations on how and in…

The Adira Foundation received nearly $750,000 from the Bristol Myers Squibb Foundation to improve care and access for the roughly 5,000 multiple sclerosis (MS) patients living in rural areas of Maryland, North Carolina, Virginia, and West Virginia. Intended to enhance the access and delivery of specialized care to…

The Accessible Product Design Alliance has released a statement calling for changes in products and packaging design to assure equal accessibility among consumers, including those with disabling disorders such as multiple sclerosis (MS). Composed of 11 nonprofit health consumer organizations in Australia and New Zealand — including MS…

As the federal election looms in Canada, a nation that has one of the world’s highest rates of multiple sclerosis (MS), the MS Society of Canada is urging patients and advocates to inform candidates about issues of importance to the MS community. The letter-writing and social media campaign,…

The Multiple Sclerosis Association of America (MSAA) is inviting people to participate in its Improving Lives Through Art Series, a cycle of virtual fundraising events starting Sept. 14. The kick-off event of this four-part fall series is a virtual follow-along painting experience. Tickets can be purchased here…

Accessing healthcare providers knowledgeable about multiple sclerosis (MS) and being able to afford additional services to improve overall health were the most pressing healthcare concerns among Canadians with the condition, a survey suggests. “These findings provide healthcare planners prioritized concerns and a profile of [people with MS] that have…