Note: This story was updated March 8, 2021, to note that tickets for MSAA’s Virtual Art Tour are still available for purchase.
Patients, caregivers, family, and friends nationwide are running fundraisers, learning how to become activists, participating in educational and community discussions, and flooding social media platforms — all to heighten awareness of multiple sclerosis (MS) among the general public, as well as to draw the attention of policymakers, public authorities, industry representatives, scientists, and health professionals.
The Multiple Sclerosis Association of America (MSAA) this year is focusing its efforts on improving mental health and wellness in the community. Its free, live webinars address concerns that include “Managing Depression and Anxiety in MS,” to be presented on March 16 (8 p.m. to 9 p.m. EST) and features the clinical health psychologist Amy Sullivan. Sullivan will also host a podcast on “Caring for the Care Partner” this here. Sign up here to be alerted when this and other podcasts are available.
A continuing education webinar, “The Importance of Cultural Sensitivity and Early Diagnosis,” is for neurologists and other healthcare professionals treating and managing Black MS patients. This MSAA program is set for March 11 (8 p.m. to 9 p.m. EST).
“MSAA is proud to announce the 2021 MS Awareness Month campaign theme on improving mental health and wellness, with specific programs addressing purpose in life, depression and anxiety in MS, care partnering, and wellness strategies to improve symptom management and overall quality of life,” the MSAA said in a statement to Multiple Sclerosis News Today.
In other online educational activities this month, the MSAA is presenting a four-part series focusing on the importance of sleep, staying connected, diet and exercise, and self-care. The series is being presented on the organization’s peer-to-peer platform, My MSAA Community, and will feature neurologists and MS specialists Annette Okai and Mitzi Joi Williams.
This nonprofit is also hosting a fundraiser on March 9 (7 p.m. to 8:30 p.m. EST) titled Virtual Art Tour — An Improving Lives Through Art Event, that explores the work of artists who historically used art as a form of therapeutic expression. Tickets are still available for purchase.
To help heighten MS awareness, the MSAA is also asking members of the MS community to share their stories this month on the My MSAA Community platform. It is also encouraging supporters to check out its MS Conversations blog this month and read the latest posts from guest bloggers.
Supporters are also welcome to indulge in MSAA Art Showcase 2021, which celebrates the work of artists affected by MS. Take a look at work by the Artist of the Month — Janet Chojnacki of Wisconsin Rapids, Wisconsin.
Elsewhere, the National Multiple Sclerosis Society (NMSS) is calling attention to the upcoming MS Awareness Week, observed March 7–13. The organization is asking supporters to mark the week by sharing stories of people with MS, using the hashtag #ThisIsMS. Follow NMSS monthlong events on Facebook, Twitter, and Instagram.
“This year marks 75 years of the National MS Society doing whatever it takes to change the world for people living with multiple sclerosis,” said Cyndi Zagieboylo, the society’s president and CEO, in a statement. “The pandemic has caused our world to look very different for the past year, but not our commitment, which is why during Multiple Sclerosis Awareness Week — March 7-13 — we will be sharing the powerful stories of people with MS who are refusing to stop living life on their own terms.”
One such story involves Lydia Emily, who was diagnosed with a progressive form of MS in 2010 and is able to continue to paint by tying her brushes to her hands. “The impact it’s had on my art is total,” she says of MS in a video. “My hands shake, and I do fine details of people’s eyelids and wrinkles, the things I love to paint. … It’s made me appreciate every stroke.”
The NMSS is also encouraging supporters to register for a nearby Walk MS fundraiser event, and to learn how to become an MS advocate. It’s also not too late to join or create activities that will help fund NMSS programs. And, supporters may go here for local opportunities to connect with others to raise awareness. There are also videos that can be shared to help others better understand MS.
MS Focus, also a nonprofit helping people with this disease, is offering online presentations aimed at mental challenges caused by multiple sclerosis.
“The vital goals of this campaign are to promote an understanding of the scope of this disease, and to assist those with MS in making educated decisions about their healthcare,” the organization states on a webpage.
In one presentation, Pearl B. Werfel, PhD, a clinical psychologist, will speak about anxiety and stress management with MS, followed by a question-and-answer session. The March 9 event starts at 3 p.m. EST. Register at msfocus.us/Werfel0321.
BioNews Services, which publishes this website, is presenting an initiative called 31 Days of MS that will feature a range of stories from the community — patients, caregivers, and family members. The project features a different person sharing parts of their lives each day throughout March on the MS News Today forums, as well as on Facebook and Instagram.
“We hope with this initiative to raise more awareness of what MS is and hope to educate others on what living with MS is like,” said Jessie Ace, project manager and an MS News Today columnist who has a podcast for people with chronic illnesses called called “DISabled to ENabled.”
“So many people with MS have incredible stories of resilience and defiance,” Ace said. “We want to raise awareness of these unsung heroes and give them the platform they deserve to share their stories.”
Added Kevin Schaefer, director of forums for BioNews: “It’s an opportunity for us to highlight the different people in the MS community and give them a platform to share their topics. It’s a really great way to engage with the community and to get other people to share their stories.”
The first story is titled “MS and Pole Dancing,” as told by @littlehmc: “When I look back at the year I got sick, I’d just celebrated my 30th birthday. I was living with my husband and 7-year-old son, had a job I loved, and just four weeks prior to my first relapse competed as a finalist in a national pole dancing competition. Ironically, I danced to ‘Fighter’ by Christina Aguilera. I danced my heart out with no idea what battle was around the corner.”
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