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.

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.

MS Activists meet with Congressman Adam Smith

Advocacy director Jim Freeburg, Congressman Adam Smith, and MS activist Simone Thompson

Monday morning, MS activists met with Congressman Adam Smith, from Washington's 9th congressional district. Congressman Smith has been a long-time supporter of the MS community - not only is he a member of the Congressional MS Caucus, but he's also a strong supporter for increased funding of MS research and many of our priority issues. 

When we met with Congressman Smith, he shared some of his personal connections to people living with MS and it was great to hear that he is keeping up on some of the new MS research that's happening within his district. He's definitely an engaged and informed representative of his community! 

MS activist Simone Thompson shared her story with the Congressman and encouraged him to keep up the good work. We reiterated our priority issues - funding for the National Institutes of Health, the primary government backer of medical research, and a funding stream within the Department of Defense for MS research. The meeting was especially timely given Congress's budget agreement this week - we need to make sure that all of Congress knows the importance of funding medical research.

Congressman Smith appreciated our visit and left us with a request that we keep raising awareness of MS activism within his district. That's something we can and will do. Stay tuned for more details about how you can be involved in MS activism. 

Never give up on medical research!

Why should we never give up on medical research? It's not just cures, cures, cures. It's jobs, jobs, jobs!

In his weekly column in The Week, former U.S. Senator Bill Frist cites the National MS Society as a leader in funding medical research and argues that we can't let up on our funding for medical research. The need is too great, and with increasing competition abroad, we need to keep investing in medical research in the United States to find a cure for diseases like MS and cancer. This applies to federal funding allocated by Congress, private industry like pharmaceutical companies, and especially community organizations like the National MS Society.

Bill Frist knows quite a bit about medical research and why advocates must continue to be strong in the face of adversity. He's a heart surgeon and served as the Senate Majority Leader from 2003 to 2007. His column particularly emphasizes the economic benefits of medical research - a perspective that I think is useful for MS Activists to know and understand.

With a tough economy and a political environment that seems to favor jobs over all else (including the environment, consumers, taxpayers, and health), MS Activists need to be able to speak the language of politicians if they want to have the maximum impact. Like anyone who works in sales knows - you have to understand your customer. Politicians want to talk about jobs, so let's talk to them about jobs. Medical research = jobs. Medical research = putting people back to work. Medical research = a winning issue for politicians (and a cure for MS!).

Congressional support for increased MS research grows

At the end of June, ten MS Activists met with Congressman Derek Kilmer to ask him for increased funding for MS research. They shared their personal stories, and by doing so, recruited a new ally to the MS movement. Read on to see what Rep. Kilmer had to say about the visit in his e-newsletter to his constituents:

"This week I met with the Greater Northwest Chapter of the National Multiple Sclerosis Society on Bainbridge Island. In the meeting I heard from a group of people living with MS all of whom had unique stories ranging from a teenage girl who faces occasional paralysis to a senior citizen who faces considerable challenges on a daily basis.

I joined the Congressional Multiple Sclerosis Caucus because the federal government has an important role to play to tackle challenges related to MS. First, Congress should continue to fund MS research to prevent the occurrence, slow progression, and lessen the symptoms of the disease. 

Second, Congress should continue working to ensure access to appropriate treatment, alternative therapies, and pain relief for those with MS so that they can live more comfortable and productive lives.

Additionally, Congress must support funding for the Lifespan Respite Care Program to ensure family caregivers have the support they need. And finally, Congress needs to continue to give these issues the attention they deserve. That’s why the advocacy of groups like the National Multiple Sclerosis Society is so important."

The meeting is a great example of MS Activists reaching out to a politician and asking for help to raise awareness of multiple sclerosis. Rep. Kilmer was elected to Congress this year to represent Bainbridge, NW Tacoma and the Kitsap and Olympic Peninsulas. It's pretty impressive that he came out so strongly in favor of our issues. Thank you to the MS Activists who made that possible! 

Should your rights as a person with a disability stop when you leave the country?

I think most people with MS would say that all people with disabilities around the world should have the same protections we have in the United States because of laws like the Americans with Disabilities Act (ADA). And yet our own leaders refused to acknowledge this when the U.S. Senate refused to ratify the Convention on the Rights of Persons with Disabilities (CRPD) in December, 2012. Why did that happen? Find out at a couple of events happening this week.

Many groups like the National MS Society were very active in supporting the CRPD. In fact, we helped to generate thousands of messages to our members of Congress, urging their support for the treaty. We'll be trying again this year as it agains comes up for consideration. However, it wasn't enough and we failed by five votes.

To learn more about these efforts, I invite you to participate in two events put on by our disability rights allies:

1) A conference call put on by national disability rights leaders, including U.S. Senator Tom Harkin, to discuss the plan for CRPD ratification. It will be Thursday, May 16 at 12 p.m. PT. To RSVP, click here.

2) An evening lecture at the University of Washington with three leading disability activists to explain the CRPD, examine why the U.S. Senate refused to ratify it, and explore strategies to achieve ratification of the treaty this year. It will be held this Thursday, May 16 from 5:00 p.m. - 8:00 p.m. at William Gates Hall at UW Law School. RSVP to Jodi Rose at jodir@dr-wa.org

The MS movement is stronger than ever.....A guest post from MS Activist, Simone Thompson

My life struggle with MS is painful and complicated. Knowing there are others suffering from MS is heart-breaking. MS does not discriminate. It is unrelenting.

Through pain, loss, confusion, fear and anger I finally realized the MS war is far larger than myself. I feel compelled to speak for those unable to speak for themselves. So many impacted by this life-altering disease rely on public officials to give voice and resources to aid in their battle.

I am ill, but I still have a voice!

Today, I fight for my brothers and sisters living with MS. I lend my voice to the battle for their success and cure - not just my own. Together we can win!

Directing my small voice to my local Washington State 9th Congressional District Representative, Adam Smith, I was delighted and enlightened to learn of his extensive involvement in the MS fight. Congressman Smith directly advised that he supportive of not only NIH Funding, but Representative Smith is also a member of the Congressional Multiple Sclerosis Caucus, which creates a political platform for discussing important issues for those facing MS. This caucus has two main goals: (1) Find solutions for people living with MS and (2) promote awareness and education about MS.

Congressman Smith is committed to finding solutions and cures for MS! His dedication and advocacy are truly appreciated.

I strongly suggest reaching out to your local and federal officials. Making your vote count is a priviledge and can lead to great results! Writing letters, attending caucuses and phone calls can go a very long way.

I think we knew this already - there aren't enough MS docs out there

A new study just published by the American Academy of Neurology finds that the current shortage of neurologists is only expected to get worse in the years ahead. For someone who lives outside of a major metropolitan area like Seattle, this isn't new news. It can very difficult for patients to find a neurologist who specializes in MS care, especially in rural places like Montana and Alaska. And while the Society has been working on this issue for some time by recruiting medical students via MS fellowships, there's more work that can be done, especially by Congress.

Two years ago, MS Activists at the Society's annual lobby day in Washington, DC asked Congress to find solutions to address this issue and just last week, neurologists were again asking Congress to do the same thing. The long-standing nature of the problem and the lack of action by Congress points to the severity of the challenge we are facing, but that doesn't mean we should give up. In fact, I think it means we need to double-down on our efforts and work twice as hard until we find a solution.

And we need to be creative about our solutions. In 2011, our Chapter successfully pushed a law through the Washington State Legislature that closed a loophole discouraging foreign-educated MS specialists from practicing in the state. This legislation has already kept one MS specialist around and we hope it will continue to be useful in the years ahead as the shortage of neurologists gets worse.

52 members of Congress ask for more MS research, including two of our own!!

Every spring, members of Congress take a good look at the needs of their communities and draw up a list of their priorities for the next year. These issues differ widely from state to state, party to party, politician to politician. In many ways though, the lists are predictable. In Washington, where our economy is dependent on trade, aerospace, technology, and agriculture, our elected officials spend a lot of time talking about those issues. In Montana and Alaska, that means rural concerns and natural resources like oil and coal. These issues must appeal to a wide swath of voters and command the headlines. Politicians use these issues to make sure their constituents know that they have someone who has their back in Congress. So who has our back? Last week, I blogged about a few members of Congress who have been strong supporters of the MS community and I'm proud to tell you about a few more.

While MS research doesn't usually sway a lot of voters in an election, Representatives Rick Larsen and Jim McDermott stepped up to the plate in a big way last week, formally expressing their support for increased funding for MS research in a letter sent to House leadership. Why? Because they were asked by people who elected them to make MS a priority. If you live in their districts, you owe them a big thank you! For Rep. McDermott, that means people in most of Seattle (except the SE), Vashon Island, and Shoreline. For Rep. Larsen, that's western Snohomish and Skagit counties, southwest Whatcom County, and Island and San Juan counties. Thanks for getting our back!

MS and Congress - what are they doing about us?

Too often, the public is unaware of what our elected officials are doing. Whether it's a lack of time, interest, or trust, Americans just don't usually know politicians do on a day to day basis. It's unfortunate, because when this happens, it's left up to the professionals (lobbyists) to tell politicians what is happening in the real world, rather than real people. I saw it all the time when I worked for a state senator in Olympia and it's the reason I came to work for the National MS Society - real people and their experiences aren't connected to their elected officials and they should be.

So this past few weeks, the Society has been taking real people to meet with the offices of our state leaders and it's been exciting to see what happens. First, in Spokane, MS Activist and small business owner Mike Burns met with Rep. Cathy McMorris Rodgers to present her with the Society's Representative of the Year award. He's pictured below, with Nicole Nida, the services manager with the Inland Northwest Chapter of the Society, on the right of Rep. McMorris Rodgers.

Rep. McMorris Rodgers has been a longtime disability advocate in Congress, serving as the lead sponsor of the Lifespan Respite Act (an important measure to support family caregivers) and co-chair of the Neurosciences Caucus. Mike shared his story of living with MS and the impact of public policy on his life. He currently gets his health care through WSHIP, a health insurance program for people with pre-existing conditions that will be made obsolete when the Affordable Care Act comes into full effect in 2014. While the fate of WSHIP is now in the hands of state legislators in Olympia, it's important for members of Congress to know what's happening with health care in the state and Mike is just the guy to spread that message.

At the same, other MS Activists met with the staff of Senator Maria Cantwell in Seattle to reiterate the need for more research funding so we can stop the progression of MS, restore function, and end MS forever. Three activists and a neurologist talked about the huge diversity within the MS community and the need for treatment options for people with progressive MS (and better and cheaper treatment options for those with relapsing-remitting). Senator Cantwell has also been a champion for the MS community - attending our events in the past and advocating loudly for more research into the causes of MS and other chronic diseases. But it's always important to keep visiting your friends and reminding them that we can't let up the fight!

These two stories are just a few of the activities that MS Activists have been up to recently, but they aren't the only ones. What have you been doing to raise awareness of MS with your elected officials?