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!

Taking Action at Walk MS

This spring, at several Walk MS locations in Washington, participants took a moment to sign letters to their members of Congress asking for support for two important issues impacting the MS community:

• The Ensuring Access to Quality Complex Rehabilitation Technology Act (H.R. 1516) streamlines access to individually configured products like manual and power wheelchairs and seating and positioning systems. These medically necessary products are vital to helping people with more severe disabilities including progressed MS—remain independent, active members of their community.

• The Advancing Research for Neurological Diseases Act (H.R. 292) fills a research hole by creating a data collection system that will help identify risk factors for developing neurological diseases, which could one day lead to a cure.

Collectively, 62 walk participants composed letters—which we then scanned and emailed to their members of Congress. These letters were delivered to six Congressional offices on behalf of the MS community. Thank you for making your voices heard!

Update: In July 2015, thanks in part to the work of MS activists, H.R. 292 passed the House as part of the larger 21st Century Cures Act (H.R. 6). The next step is for the Senate to act, which is not expected until this fall. The Society will continue to advocate for this legislation then.

If you’re ready to support issues that affect the MS community, take action now! Ask your member of Congress to protect access to complex rehabilitation technology and pledge your support to the ADA.

Congressman Kilmer Participates in Walk MS: Bainbridge Island

Rep. Derek Kilmer (center) and Walk MS participants

We were very pleased to have Congressman Derek Kilmer participate in Walk MS: Bainbridge Island this year. 

Congressman Kilmer has demonstrated his ongoing commitment to issues that affect the MS community by supporting robust research funding for the National Institutes of Health, as well as respite programs to support family caregivers. He and his staff regularly meet with MS activists to discuss the needs of the MS community—from research funding to access to treatment. (Here is a blog post from 2013 with a great update from Rep. Kilmer on his visit with some MS activists on Bainbridge Island.) 

Thank you, Congressman Kilmer, for being a part of the movement to end MS!

Greater Northwest Activists Take On DC!

Two weeks ago, along with 350 other activists, staff, and volunteers from National MS Society chapters across the country, our Greater Northwest Chapter delegation traveled to Washington, DC to participate in the Society’s annual Public Policy Conference.

Our activists ready to meet with their members of Congress

We bring a small delegation of volunteers each year, and in our selection process we prioritize engaging both new and current activists and ensuring that key congressional districts are represented. 

This year, our six volunteers advocated for three issues:

1. Funding for MS research through the National Institutes of Health and the MS Congressionally Directed Medical Research Program;
2. The “Ensuring Access to Quality Complex Rehabilitation Technology Act,” to make it easier for people with MS to access the mobility devices they need; and 
3. The “Advancing Research for Neurological Diseases Act / 21st Century Cures Initiative,” to collect data on neurological conditions like MS to help us better understand the disease and obtain more accurate incidence and prevalence rates.

A Society delegation presents Senator Patty Murray (center) with her award.

One of the highlights of the trip included honoring Washington Senator Patty Murray with Senator of the Year, the Society’s highest honor for elected officials. The Chapter's Washington Government Relations Committee Chair, Nora Gibson, presented the award, and recognized Senator Murray’s work as a powerful advocate for families affected by MS. We are certainly proud to have the Senator’s work and the work of our chapter recognized at the national conference!

MS Activists Nora Gibson and Steve Ehlert

On Wednesday, March 11th, our activists conducted 16 visits with their members of Congress. Our Washington State activists had in-person meetings with both of their Senators, and activists Gayle Rundstrom, Steve and Vicki Ehlert, and Nora Gibson shared powerful stories with our Representatives. Thanks to the work of activist Doug Toelle, we received a commitment from Alaska Representative Don Young’s office to be a co-sponsor for the neurological disease data bill (H.R. 292). In addition, Montana activist Lora Waid forged new connections with staff members in the office of Representative Ryan Zinke, a freshman legislator from Montana. 

Rep. Zinke's staff with activists Lora & Doug

Lawmakers see us as a credible source of information for what matters to the MS community. Of the 18 members of Congress that represent our Chapter area, six are members of the Congressional MS Caucus—demonstrating their commitment to taking action on issues related to our work.  Together, our legislative champions, terrific volunteers, and online network of MS activists are playing a critical role in bettering the lives of people affected by MS.

Congratulations to our activists for a successful trip and for bringing awareness of key issues affecting people living with MS to our members of Congress. Thank you for your commitment to our work and for serving as dedicated leaders in the MS movement. You help us support the Society’s goals to shape federal policies and programs to better meet the needs of people living with MS. 

Washington MS Activists with Senator Maria Cantwell

Are you ready to take action? Sign up for our MS Action Alert Network here.

Success in Olympia: State Action Day Recap

Another successful State Action Day has come and gone, and what a day it was! MS Activists came from all corners of the state -- as far as Spokane, Granite Falls, and Vancouver -- to be a part of the event. 

Here’s a recap of what MS Activists were up to on January 27, 2015: 

• More than 40 MS activists came together in Olympia to show their support for people living with MS and conducted over 75 in-person visits with lawmakers
• At home, activists spread the word via social media and sent more than 80 messages to their legislators 

Together, we successfully raised awareness and made a powerful ask for increased funding for special needs transportation -- services that help people with disabilities get where they need to go. Access to transportation is a major issue for people living with MS. Mobility impairments and fatigue are some of the most common symptoms of MS, and as the disease progresses, many individuals are no longer able to drive.

People with MS and other mobility challenges need and deserve the opportunity to access jobs, shopping, church, and community activities, so they can live as full a life as possible. Washington’s lawmakers have the ability to improve the lives of people with MS by increasing funds for special needs transportation. 

Rep. Linda Kochmar (left) with MS Activist Cermit Rickey (center).

The special needs transportation fund breaks down barriers to transportation for people who are unable to drive because of a disability or age. It funds projects that help local communities offer efficient, coordinated transportation services, such as paratransit or non-profit transportation programs. While paratransit programs are required under federal law, local transit agencies often have a difficult time funding them. 

We can do better—and that’s where we need your help! MS activists are working together to ensure that our state provides adequate funding for accessible transportation. We asked lawmakers to support an additional $160 million in special needs transportation funding in the next transportation package. This ask resonated with many legislators who continue to express their support for this request.

Commissioner Mike Kreidler speaks to the group.

Finally, we were honored to host special guests Insurance Commissioner Mike Kreidler and Senator Joe Fain. Commissioner Kreidler spoke to the group about critical insurance issues affecting the MS community, including increasing transparency in prescription drug formularies and improving provider networks. Senator Fain energized the room with his overview of key transportation issues and the value of constituent voices in moving issues forward.

Thank you to all of our activists for raising awareness and speaking up on behalf of the MS community. If you weren't able to attend, you can still make a difference! Email your legislators today and ask them to fund accessible transportation. 

Questions? Want to get involved? Let us know.

Join MS Activists in Olympia next week!

State Action Day is just around the corner. This annual event brings together MS Activists from all over Washington to raise awareness of issues affecting the MS community among our state legislators. If you are new to advocacy, but still want to attend -- don't worry! We will provide ample information before and during the event to get you up to speed. 

Our elected officials want to hear what matters to their constituents. Together, we will bring them the stories of people living with MS and we help change laws. Still not convinced? Here's some of the reasons you should attend State Action Day:

1. To build a relationship with your legislator. If you already have one, consider it a visit to a friend. Your legislator represents YOU and wants to hear about issues relevant to your life.
2. To stand in solidarity as an MS community, to speak out on behalf of all the 12,000 people living with MS and the 72,000 people in our state affected by MS 
3. To make a statement. As our state legislators make decisions, we want them to keep the needs of people of MS in mind. We will help them understand what issues matter to our community. 
4. To make a difference. Together, four years ago, we passed a law that allows more MS specialists to practice in our state. Three years ago, we stopped people with MS from losing their health care. Two years ago, we made sure everyone with MS has access to affordable and comprehensive health care. Last year and this year, we are continuing our work to support accessible transportation options to help people with MS get where they need to go. Help us make change.
5. To build awareness. Our presence at the Capitol (in our orange scarves) brings attention to our cause! It also educates you on current issues that you can share with others who care about the MS community.

I hope you can join me and other MS activists in Olympia on Tuesday, January 27th to share important issues affecting the MS community with our legislators. 

Registration is still open! 
Sign up at www.nationalmssociety.org/WAactionday 
or by calling 1-800-344-4867, option 1.