As we celebrate another MS Awareness Week and begin another season of fundraising, it’s important to take stock of our overall direction. The National Multiple Sclerosis Society recently conducted an extensive, 18-month effort to gather feedback and ideas from a broad audience regarding what the world should look like for people with multiple sclerosis in the future.
It’s likely that members of the Greater New England Chapter were included in the survey.
Your input helped shape our organization’s strategic response to multiple sclerosis for the next five years. While there are clear similarities to the work we’ve been doing, there are also key differences that lay out a more refined direction for our work.
The dominant recurring themes that people like you expressed were: more research, more support for those with progressive and/or severe MS, and attract and retain more scientists, physicians and health care professionals to the MS field.
We also heard the following messages loud and clear: enhance advocacy for health care and insurance change, focus on quality of life, address the needs of people affected by MS in rural areas, increase relevant opportunities for people affected by MS to connect, enhance awareness, and be an organization of choice.
All of these themes and messages resonated with the National MS Society, and helped define our five primary goals for the next five years, which are:
- We are a driving force of MS research and treatment to stop disease progression, restore function, and end MS forever.
- We develop, deliver and leverage resources to enhance care for people with MS and quality of life for those affected by the disease.
- We are leaders in the worldwide MS movement, mobilizing millions of people to do something about MS now.
- We are activists.
- We develop and align human, business and financial resources to achieve breakthrough results.
When we rally together, the combined strength of individuals with MS and their family members, friends, and coworkers, plus Society staff and health professionals, and others who want to make a difference, we believe we can achieve these goals and significantly change what life will look like for people with MS.
Your involvement in fundraising efforts like Walk MS is key to the success of our shared goals. There are 36 Walk MS sites this spring across Maine, Massachusetts, New Hampshire, and Vermont, where you can participate and raise money either as a walker or as a virtual walker (you can participate as a fundraiser without being present the day of the walk). One of the most inspirational moments for me and for everyone at the event is a Walk MS team surrounding a loved one with MS as they parade along the walk route. Walk MS is a highly visible event that demonstrates to the public the depth of your commitment to the movement to create a world free of MS. When you attend Walk MS, it’s like being at a family reunion, where you know people care for you, and where everyone celebrates each other. Join the rally, join the movement! Register online today at www.walkMSgne.org, and celebrate the progress we’ve achieved together.
Thank you for being a huge part of the movement to create a world free of MS.
More than two million people in the world live with MS. To raise awareness of the global scope of the disease, and to strengthen the worldwide network of people living with MS, the Multiple Sclerosis International Federation started World MS Day two years ago. More than 200 events in 60-plus countries will address this year’s theme of employment and access to appropriate work. Take a survey about work or sign a petition urging leaders and employers to protect the rights of people with MS to work at worldMSday.org.
Dr. Timothy Coetzee is the Society’s new chief research officer, effective January 1, 2011. Dr. Coetzee has researched MS his entire career. Most recently, he was instrumental in founding Fast Forward, the research subsidiary of the National MS Society that focuses on speeding new treatments to market, and served as its president from 2006 to 2010. He received his PhD in microbiology and immunology from Albany Medical College, N.Y., in 1993, and in 1995 received the Society’s Advanced Postdoctoral Fellowship to support his research on the structure and function of myelin. He joined the Society’s Research Department in 2000, where, among other accomplishments, he helped establish the Translational Research Partnerships in Nervous System Repair and Protection in MS, a five-year commitment to fund four large collaborative research teams focused on developing tools and strategies to promote nervous system repair and protection in MS.
The da Vinci Awards for Accessibility and Universal Design are given annually for innovations in technologies that enable equal access and opportunity for all people, including those with disabilities.
At a gala event in September at the Henry Ford Museum in Dearborn, Mich., awards were presented for:
- Hands-free speech recognition. VoicePower Ultimate makes speech recognition more productive for users with limited hand function.
- A mobility vehicle. The MV-1 is the first-ever vehicle designed from the ground up for wheelchair users. An MV-1 in a taxi fleet, for example, would make traveling easier for many.
- An accessible park. Francis Motz County Park, in Michigan.
- Music for everyone. Virtual Music Instrument software allows people with limited movement to create music by manipulating on-screen blocks of color.
- Tongue-operated technology. The Tongue Drive System is a wireless and wearable technology that allows people to control computers, wheelchairs, cell phones and home appliances.
Proceeds from corporate sponsorships and the gala raised almost $135,000 for the Michigan Chapter of the Society. Learn more at youtube.com/davinciawards.
Our annual North American Education Program includes a video and book focusing on an MS topic. The current NAEP material, called Who? Why? How? — Searching for the Cause of MS, includes discussions with leading medical researchers on the causes of MS and how these efforts may lead to treatments and even finding a cure. Call us for a copy.
Recent and upcoming MS Learn Online videos include swallowing difficulties (now up), mood changes (now up), MS and the African American community (now up), searching for the cause of MS (two-part series, May 5 and 19), and more. New Learn Onlines in Spanish will debut in March. View them any time, night or day, at www.nationalMSsociety.org/mslearnonline, where you can also sign up to receive an e-mail when a new webcast debuts. Transcripts and podcasts are available for most programs.