Walk MS: Raising Advocacy Awareness

MS Activists at our booth in Seattle

This year’s Walk MS events in Washington were a smashing success! We estimate that nearly 9,000 people from across the state participated in Walk MS to connect, learn, and fundraise to move towards a world free of MS.

We were proud to host advocacy booths this year at the Bainbridge and Seattle Walks. Thank you to MS activists Bill, Holly, and Karl for engaging Walk MS participants in those locations, and to Lisa, who was instrumental in running the new Community Tent in South Sound, where participants could get information about Society resources and programs. Thanks to their efforts, we were able to sign up an additional 25 people for our MS Activist Network!

In addition, we invited Walk MS participants to consider the ways that our elected officials can make a difference for people affected by MS. As in past years, we conducted a poll and encouraged people to vote for the issue they care about. Our question was, “What’s the most important thing politicians could be doing to help people living with MS?” Nearly 200 people voted in our poll, and here are the results:

Although support for family caregivers through respite care had the most votes, many expressed strong support for home modifications and accessible transportation as well. Thank you to all of our MS activists who came out to Walk MS to raise awareness about the Society’s advocacy work. Way to go team!

25 Years of Impact: Raising Our Voices on Capitol Hill

Our Greater Northwest delegation

Six volunteers from the Greater Northwest Chapter were among the more than 350 MS activists who attended the Society’s 25th Annual Public Policy Conference in Washington, DC this month.

Together, we had the opportunity to celebrate our advocacy accomplishments over the last two-plus decades, including increased access to healthcare, hundreds of millions of dollars invested in MS research, and guaranteed civil rights for people with disabilities. We also learned about current priorities in preparation for meetings with members of Congress—our chance to share our personal stories and to urge support for policies that will address the needs of people affected by multiple sclerosis.

MS activist, Gayle Rundstrom, shares her reflections:
 

Bill & Anne from Montana ready to visit with their legislators

It was a long flight from Washington State to Washington, DC, which was made even tougher by the daylight savings time change! The conference kicked off on Monday morning with a session for District Activist Leaders—volunteers who are leading the way in their community by building relationships with elected officials in their legislative districts. We discussed our key responsibilities, current policy priorities, and developed our personal stories to tell our legislators.

In the afternoon, you couldn’t help but be excited by walking into the ballroom and seeing 350 people all supporting MS issues! There was energy everywhere! We heard a presentation on the political climate by Charlie Cook, who has served as a political analyst for major news networks. There was also recognition of 2015 elected officials of the year and Volunteer Hall of Fame inductees, including our own Doug Toelle from Alaska! The evening wrapped up with a reception and opportunities to network with MS activists from around the country.

En route to a legislative meeting

Gayle & Jessica arrive at Capitol Hill

On Tuesday, we focused on learning about our priority issues. We started out with a panel discussion about the Advancing Research for Neurological Diseases Act. This legislation, which will help us better understand the size and demographics of the MS population, has already passed the House as part of the 21st Century Cures Act, but still needs to pass the Senate. A second panel discussion was on NIH and CDMRP research funding. This is a big deal because NIH funding, in particular, has not increased in the past 10 years, not even keeping up with inflation. We need both NIH and CDMRP funding to support important medical research for MS and other diseases. Other conference sessions featured top researchers and experts from around the country, and included discussions of the complexities surrounding access to affordable MS medications.

After all of this preparation, we geared up to meet with our legislators. On Wednesday, we traveled together to Capitol Hill and asked our members of Congress to support our issues. It was so wonderful to see people with orange scarves, ties, and socks, walking the halls of Congress and on the streets outside. Our smiles and hand waves were invigorating! There was a lot of energy and enthusiasm, and it was powerful day advocating for people with MS.
 

Meeting with Senator Cantwell (center) from Washington State

Congratulations to our activists for a great trip and for their successful meetings with members of Congress from Alaska, Montana, and Washington State. Our MS activists at home made a difference, too, by sending thousands of Action Alert messages to their elected officials in support of the issues Gayle mentioned above. Together, we are helping shape federal policies and programs to better meet the needs of people living with MS.

Make sure you’re getting the latest updates and information on opportunities to take action by signing up for our MS Activist Network.

Taking Action in Olympia: WA State Action Day Recap

Yet again, MS Activists in Washington State have demonstrated that together we are stronger than MS! More than 65 activists attended our annual State Action Day at the state capitol in Olympia, and conducted nearly 100 visits to their legislators.

This year's group of MS Activists!

We brought the stories of people living with MS to our state's elected officials, ensuring they understand the needs of people with MS. Our requests focused on two pieces of legislation, HB 2326 and HB 2445, both of which will improve access to information about our health care insurance and how decisions are made about benefits and care.

Thanks to all of our activists for joining us!

MS Activist Jonathan Sari shares this recap of our annual Washington State Action Day:

MS Activists ready to take action!

On a brisk February morning, committed MS Activists from around Washington State met in Olympia to further the cause of Washingtonians living with MS.

Our legislative agenda for the session was to improve transparency in our state's health insurance system. As happened each of my prior years, we heard from expert speakers

who laid out the problems that our proposed legislation was intended to remedy, along with the outcomes we expected to result from those remedies. We also were honored to hear a vision for the future outlined by our Governor Inslee.  

Governor Jay Inslee speaks to the group.

After the presentations, it was time to speak with our legislators. For Legislative District 46, those legislators are Senator David Frockt, Representative Gerry Pollet, and Representative Jessyn Farrell. We did not manage to secure meetings with Representative Pollet or Senator Frockt, but Representative Farrell graciously made time to meet with us.

It was my third year attending our State Action Day. This year, my two compatriots (who had made the hour-long drive from our North Seattle district to the state capitol each of my prior two years) couldn't attend -- so I conducted the visits on my own.

Jonathan Sari (right) at a legislative meeting last year

I arrived at Representative Farrell's office fifteen minutes early. These legislators are busy! While I waited I watched her wrap up a meeting with the fire fighters union and receive a message from the Speaker of the House -- a request that ended up limiting our meeting time. 

Representative Farrell remembered me from our earlier meetings and given our limited time, I kept our request to the basics: I asked for her support for our bills and explained that we hoped to streamline reporting and improve accountability for health insurance. She asked some good questions and although I didn't remember all of the specific answers, I promised to get answers that day. I also shared my personal experience of my own medication denial by my insurance company. I thanked her for her time, letting her know that I was following her email newsletter, and let her get to her meeting.

MS Activists meet with legislative staff.

I also dropped off the information packets with Representative Pollet's and Senator Frockt's offices. Before returning home, I reported in to Linnea, the Chapter's advocacy manager, to request the information to follow up so I could follow up that evening with Rep. Farrell.

I am glad to be a part of the Society's efforts to make government work better for those of us living with MS.

-Jonathan Sari

Visit our Facebook page for more photos of our State Action Day event.

Questions? Want to get involved? Let us know.

Doug Toelle: Society Volunteer Hall of Fame Honoree

Congratulations to Doug Toelle, one of our MS Activists from the Greater Northwest, on being inducted into the National MS Society’s Hall of Fame for Advocacy. Doug is a dedicated MS activist who isn’t afraid to speak up about issues affecting people living with MS and other disabilities.

Diagnosed with MS in 2000, Doug is a proactive and persistent advocate who has forged strong relationships with his local, state, and federal legislators and helped move forward issues in Alaska including advancing disability awareness training for first responders, creating an employment first state, supporting Medicaid expansion, and improving access to durable medical equipment. Aside from his role as an MS Activist, Doug is a mentor to other activists, a self-help group leader, and Walk MS participant.

Great work, Doug!

Check out other chapter and national award recipients here.

Riding & Voting to End MS

For the second year, MS Activists were back at the Bike MS: Deception Pass Classic ride, asking cyclists and volunteers to learn more about advocacy and cast their vote for the issue they think should matter most to our politicians.

We collected 26 letters to members of Congress, requesting support for two initiatives that impact people with MS: improved access to mobility equipment like power wheelchairs, and enhancing research and data on neurological diseases like MS.

In addition, more than 100 people participated in our bean poll, casting their vote on what they think is the most important thing politicians could be doing to help people living with MS. And the results are in!

Thanks to our MS Activists who helped staff the booth and raised awareness about the work we do to support the MS community. Interested in getting involved? Learn more!

Bringing Better Accessible Transportation to Washingtonians

Photo credit: Steve Morgan

Thanks to the work of MS activists, people across Washington can now look forward to accessible transportation improvements in their communities. Over the last several years, we have asked our legislators to increase funds for “special needs transportation” – to help ensure that Washington’s transportation system works for people who aren’t able to drive because of a disability like MS. These funds support projects that help local communities offer efficient, coordinated transportation services, such as paratransit or non-profit transportation programs.

Thanks to MS activists like you, this year legislators allocated $200 million dollars for special needs transportation! This funding is part of a long-awaited 16-year transportation package, which includes support for many other projects and infrastructure as well.

While many people have cars to get around, people living with MS often do not have the option to drive as the disease progresses. Yet people with MS and other disabilities need and deserve the opportunity to access jobs, shopping, church, and community activities, and to live as full a life as possible. The special needs transportation fund breaks down barriers to transportation for people who are unable to drive because of a disability or age.

Congratulations to our activists across the state – your voices were heard and legislators made transportation for people affected by MS and other disabilities a priority in our state. We hope to provide updates in the future about how these funds are helping communities across the state.

Take action now! Please join us in saying “thank you” to our legislators for supporting accessible transportation in our state. [Update: please note this action alert is no longer active.]

As a reminder, if you’re not yet on our Activist Network, sign up today to receive important updates and alerts about how you can take action. Your voice matters – thanks for being involved!

MS Activists Help Bring Medicaid Expansion to Montana & Alaska

Together, MS activists are achieving great progress by supporting Medicaid expansion to provide quality, comprehensive care to our most vulnerable populations. Medicaid is a critical safety net for people living with MS, because: 

• Many people with MS are unable to afford insurance costs if they lose their job, due in part to the high costs of care in managing the disease.
• Medicaid has traditionally been able to fill the gap, but you have to be very low income and already disabled to qualify. 
• The new health care law gives us an opportunity to allow more people with MS (and their caregivers) to have access to quality health care under Medicaid expansion.

Read on for more details on recent legislative successes:

Medicaid Expansion Passes in Montana
In late April, Governor Bullock signed Medicaid expansion into law! This measure ensures that nearly all of the 1,700+ people in Montana living with MS can have access to affordable health insurance. It will offer low-cost health insurance to Montanans that make too much money for the traditional Medicaid program, but too little to receive subsidies on the health insurance exchange.

Photo credit: MT Governor's Office

MS activists worked hard to advocate for this issue by reaching out to their legislators in person, via phone and email, and also by submitting letters to the editor of local newspapers across the state. We also sent out an Action Alert to our MS Activist Network, and activists responded by sending emails to their legislators in support of expansion.

The National MS Society was part of a larger effort to support Medicaid Expansion. We participate in the Alliance for a Healthy Montana, a group of healthcare and public health partners working together to monitor and take action on health policy issues. We appreciate everyone’s efforts to make this a reality.

Alaska’s Governor Walker Expands Medicaid

Photo credit: AK Governor's Office

In July, Alaska’s Governor, Bill Walker, said he would expand the Medicaid program in the state using his executive power. MS activists and health advocates have been working tirelessly over the last few years to support the expansion of Medicaid in their state, but the state legislature could not agree on the path to or process for expansion.

The expansion ensures that nearly all of the 1,000+ people living with MS in Alaska have access to care, along with many others who living with chronic illnesses or disabilities. Alaska is the 30th state to accept Medicaid expansion and the state’s Department of Health and Social Services hopes open enrollment to Alaskans starting on September 1, 2015.

As a reminder, if you’re not yet on our Activist Network, sign up today to receive important updates and alerts about how you can take action. Your voice matters – thanks for being involved!