Monday, September 16, 2013

Representative Cyrus Habib agrees to #KeepUsMoving. Will you?

This morning, MS Activist Karl Schiller and I met with state Representative Cyrus Habib to ask for his help with our effort to improve transportation for people with MS and other disabilities. Karl, a constituent of Rep. Habib, shared the experiences of many people in the MS community who are not able to drive because of their MS. He attends a weekly swim aerobics class and one of the participants relies on the King County Access shuttle to get to and from class. Sometimes she'll have to wait an hour or more to get picked up from class because their aren't enough shuttles. We hear stories like this all the time.
Rep. Cyrus Habib
Representative Habib fully understands the challenges that someone with a disability faces. When he was 8, he lost his eyesight to cancer. Now, he's a Yale-educated attorney and a member of the state legislature When we asked if he would support this effort, Rep. Habib not only said "yes!" - he encouraged us to go even further and ask for a bigger package. People with MS have so many unmet needs when it comes to transportation, and while Rep. Habib has agreed to help, we need your help as well. 

We've blogged previously about town halls throughout the state where legislators want to hear from you about your transportation needs. However, because of overwhelming demand, the legislature just added three more town halls in Seattle, Bellingham, and the Tri-Cities. See below for the complete list, with the new additions in bold.

  • Sept. 17 – Bellevue (Northwest Region) 6-9 p.m.
    • Stevenson Elementary School, 14220 NE 8th St., Bellevue, WA 98007
  • Sept. 18 – Everett (Northwest Region) 6-9 p.m.
    • Snohomish County, Robert Drewel Building, 3000 Rockefeller Ave., 1st floor, Everett, WA 98201
  • Sept. 23 – Wenatchee (North Central Region) 6-9 p.m.
    • Chelan County PUD Auditorium, 327 N Wenatchee Ave., Wenatchee, WA 98801
  • Sept. 24 – Yakima (South Central Region) 6-9 p.m.
    • Yakima Area Arboretum, Garden View Rm., 1401 Arboretum Dr., Yakima, WA 98901
  • Sept. 26 – Tri-Cities 6-9 p.m.
    • Columbia Basin College, Gjerde Center, 2600 N. 20th Ave., Pasco, WA 99301
  • Oct. 2 – Spokane (Eastern Region) 6-9 p.m.
    • Greater Spokane Inc., 801 W. Riverside, Spokane, WA 99201
  • Oct. 7 – Vancouver (Southwest Region) 6-9 p.m.
    • Vancouver Community Library, Columbia Room, 901 C St., Vancouver, WA 98660
  • Oct. 9 – Tacoma (Olympic Region) 6-9 p.m.
    • Evergreen Tacoma Campus, Lyceum Hall, 1210 6th Ave., Tacoma, WA 98405
  • Oct. 14 – Seattle 6-9 p.m.
    • King County Courthouse, Room 1001, 516 3rd Avenue, 10th Floor , Seattle, WA 98104
  • Oct. 15 – Bellingham 6-9 p.m.
    • Port of Bellingham Cruise Terminal, 355 Harris Ave., Bellingham, WA 98225
Let us know if you'll be attending any one of these meetings so we can get the most current information to you. Send an email to or call 206-284-4254, ext 40237.

Thursday, September 12, 2013

#KeepUsMoving was @BikeMSWashington. Where is it going next?

This past weekend, we hosted over 2,000 cyclists in Skagit County for our annual Bike MS. MS Activists were out in force at the ride, helping out in a number of ways. Some, like Lisa and Martin Boon, help feed the cyclists. Others, like Emily Cole and Dr. Lily Jung Henson did the ride. Still others like Dorthann Cloud and Linnea Nasman helped us recruit 30 new members for our online Action Alert Network. A big thank you to all those who participated!
MS Activist Dr. Lily Jung Henson (on back), with her husband John Henson

More and more, I'm reminded that one of the biggest keys to our success as an advocacy organization is our ability to raise awareness about MS and the issues that most impact people with MS. So having an event with 2,000 cyclists is a great way to get the word out there. But it's not nearly enough and we need your help.

Can you help us spread the word about the #KeepUsMoving campaign? While you may not realize it, transportation is an issue that affects absolutely every single one of us. If you drive on a road, take a ferry, walk on a sidewalk, or take a bus - government decisions regarding transportation affect you every day.

And it impacts people with MS in an especially unique way. For example, I just was talking to a co-worker of mine, Molly, whose dad lived with MS. Molly told me how MS impacted her life. As her dad's MS progressed, it became apparent that her family needed a modified van that could fit her dad's wheelchair. The van cost $75,000!!!! Instead of paying for Molly's college education, her family spent their savings to pay for Steve's van. It shouldn't have to be that way.

MS is sure expensive, and our transportation system doesn't make it easy for someone with MS to get around. Can you help us do two things today?

1) Find more stories like Molly's. Stories don't just inspire us to think differently, they inspire politicians to act! Share your story with us at or let me know your story ( and we'll share it with others.

2) Spread the word. Yesterday, we sent out an Action Alert email to everyone on our list, asking for their help with this effort. Can you forward it to your friends with MS who may have a good story to tell? Or if you didn't get the email, send me a note at and I'll pass it along to you.


Friday, September 6, 2013

What's in Obamacare for people with high out of pocket costs?

Last night, a KING 5 town hall event on health care featured a question from MS Activist, Susan Brock. The town hall, titled "Health Care: Time to Get in the Game," answered many common questions that people with MS may have about the health law, like "what will happen to me if I'm on Medicare?" or "what will happen to my coverage at work?" Susan's question may be the most important though for people with MS - "What's in the law for people with a chronic condition like MS who experience high out of pocket costs?" 

I don't think Susan's question was answered sufficiently. The panelist answering the question had just talked about help that employers will get for paying for employees' coverage and so he answered the question with that in mind. However, Congressman McDermott did point out that there are no more annual or lifetime limits that often limited coverage for someone with extremely high costs. In addition and most importantly, everyone will now have an annual cap on out of pocket expenses (roughly $6300/year - not including premiums). And if you have a lower income (say because your MS prevents you from working full time), you'll have an additional help with your out of pocket costs. So in short, there's a lot to like in the Affordable Care Act if you currently have high out of pocket costs.

The KING 5 special will be on the air again on KONG 6/16 Sunday, September 7 at 6:00 p.m. and again on NWCN Monday, September 9 at 8:00 p.m. It's also available online - look for Susan's question at the 4:08 mark during the third segment

Keep checking back on this blog for more information on the new health care law. There's lots more to come! And if you want to know more about how you will be impacted by the health care law, speak to an MS Navigator at 800-344-4867 or check out more MS-specific information on our website.