MS Activists Walk the Walk (and Talk the Talk!) in Seattle

MS activists take action in many ways, whether it's meeting with their legislator, telling their story, determining policy priorities on our Government Relations Committee, or taking advantage of virtual advocacy opportunities through blogging, Twitter, or our MS Action Network.

At Walk MS: Seattle, our volunteers (including MS activists Holly Hawker and Karl Schiller) reached out to future activists by spreading the word about the Greater Northwest Chapter's advocacy work at our MS Activism booth.

Hundreds of participants interacted with our booth at the Gas Works Park rest stop by participating in our “bean poll” (voting on which policy issue matters most by placing a bean in one of three jars), taking a photo in our MS Activism photo booth, or signing up for our MS Activist network email list.

Our Activism Booth by the Numbers:

• 4: Number of wonderful volunteers at our booth!
• 400: Walk participants who participated in MS activism booth activities
• 113: Photos taken in our MS activism photo booth.
• 3: Photos that Blitz, the Seattle Seahawks mascot, took in our booth.
• 222: People who ranked "increasing funding for MS research" as the most important thing politicians could be doing to help people living with MS. (That's 54% of the votes.) 
• 22: New activists signed up for our MS Action Network. Welcome!

For more photos from the booth, visit our Facebook page.

These were just a few simple ways to engage participants and raise awareness about our chapter’s advocacy work. How are you spreading the word about MS? To volunteer or get more involved, contact us!

See you at next year's Walk!

By Linnea Nasman
MS Advocacy Volunteer

Medical research funding protected by Governor Inslee

Medical research advocates should be pleased with Governor Inslee's recent actions that preserved funding for the Life Sciences Discovery Fund (LSDF). On Friday, the Governor vetoed legislation that would have gutted funding for the LSDF.

The LSDF was created by Governor Gregoire in 2005 from tobacco settlement monies to invest in promising medical research in Washington state. One of the largest LSDF grants went to the Benaroya Research Institute to create an autoimmune research program to look for new treatments for conditions like MS. Since then, the Legislature has significantly reduced funding for the LSDF due to economic troubles, and proposed eliminating funding completely this year.

The Society, along with several other patient advocacy organizations, urged the Governor to veto the funding cut. Increasing funding for medical research has long been a priority for the Society, and we are pleased that medical research will continue in Washington state.

MS Activist to speak out about clinical trials

MS Activist Jonathan Sari just let me know that he will be speaking about the importance of clinical trials at an upcoming panel. His participation reminds me of the many ways that people with MS can be activists even when they aren't speaking to elected officials. Spreading awareness and encouraging others to take action are vital steps in strengthening the MS movement and I applaud Jonathan for his efforts.

His panel, to be held the evening of January 30th at Seattle's Town Hall, also features MS researcher Dr. Mariko Kita of Virginia Mason. For more information and registration information, visit this page.

Participation in clinical trials is incredibly important to help move MS research forward. Clinical trials often need hundreds of patients willing to see if new treatments are safe and effective. To facilitate this effort, the Society maintains a database of clinical trials that are recruiting people with MS. To learn more about these trials, visit this Society's webpage.

Jonathan will be joining us in Olympia this year to speak to legislators at our annual Day of Activism on February 5. If you see him there, be sure to ask about his participation on the panel. And don't forget - it's not too late to register for the Day of Activism!

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! 

Tips on how to be an effective citizen lobbyist - from the staff of Congressman Adam Smith

Meeting with politicians and their staff is one of the best parts of my job. I'm always amazed at how easy it is to talk with our elected officials and it makes me proud to have such an open and democratic government in our country.

A big part of the job description of a politician is to meet with constituents - it's how they learn about important issues and stay accountable to voters. A politician can't be everywhere at once though and so they rely on their staff to help out with their tasks. Last week, along with MS Activists Simone Thompson and Karl Schiller, I had the opportunity to meet with his very helpful deputy district director of Congressman Adam Smith, Debra Enteman.

Karl and Simone were great in sharing their stories with Debra, and she was very helpful in giving us some tips on how to be effective citizen lobbyists. I think they are worth repeating:
1) Stay informed - learn about the issues and know what you want your elected officials to do about them.
2) Tell your story effectively - the best activists don't just have an opinion on an issue, they have a personal connection to the issue that makes it compelling.
3) Remind the elected official that you are a constituent - include your address in all your correspondence as politicians care most about voters in their district.

Congressman Adam Smith is a longtime supporter of the MS community so we didn't have to do any hard selling during the meeting. He's a member of the Congressional MS Caucus and a fervent supporter of increased funding for medical research. Still - it was a great chance to be a part of our democracy.

Karl Schiller, MS Activist and Jim Freeburg, advocacy director

Did you know the Washington State Legislature has been cutting medical research funding?

It’s not well very known, but since 2005, the state of Washington has been funding innovative scientists in our own backyard who are dedicated to finding cures for diseases like MS through the Life Sciences Discovery Fund (LSDF). The funding for this research has come from the multi-billion dollar tobacco settlement that then-Attorney General Christine Gregoire negotiated to compensate for increased health care costs from tobacco use. Unfortunately, this funding has been cut more and more as the budget crisis in Olympia worsens.

I was reminded of this state program by a recent article in the Puget Sound Business Journal that highlights the recent round of grants. While there aren’t any that relate to MS this year, one of the largest grants ever by the LSDF went to Benaroya Research Institute in 2007 to focus on improved diagnosis and treatment of autoimmune diseases. That grant has since been used to leverage millions more in funding from other institutions like the NIH.

I’ve been looking for an excuse to highlight the LSDF on this blog, because it’s a great example of what more the Legislature could do if it had more funding. The LSDF has been continually raided by legislative budget writers to pay for other state programs like education and health care. It was initially expected to fund $350 million in research over 10 years but only will be able to fund $7 million in research this year. That's too bad because we have so many smart scientists who are willing to work harder and smarter to find cures to diseases like MS, but don't have the funding to do it.