Friday, March 9, 2012


Ted Thompson, JD
Vice President of Federal Government Relations

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2012 Public Policy Conference a Success.  Earlier this week over 320 MS Activists came together at the 21st annual Public Policy Conference.  Attendees arrived to receive an overview of the climate in Washington DC by Al Eisele, founding editor of The Hill who has been in Washington for 40 years and provided some history for the group, and Jonathan Capehart, columnist for the Washington Post and frequent guest on MSNBC, who provided insight into the Tea Party & Occupy movements and the impact these groups are having.

Activists were briefed on the key issues (Research through the NIH and CDMRP; Lifespan Respite; MS Caucus/MS Awareness Week) we brought to Congress on Hill Day.  On Super Tuesday we were honored to have nationally known political science expert Larry Sabato of the University of Virginia give a luncheon speech, providing interesting insight into the GOP presidential nomination process (read Sabato’s latest Crystal Ball).  In 2008 Sabato predicted President Obama’s electoral college victory within 1 point, and accurately predicted his popular vote percentage. 

At the Tuesday dinner we were joined by motivational comedian Brett Leake who lives with muscular dystrophy – Brett was funny, inspirational, and motivational.  On Friday we had a kick-off program in the morning and over 300 activists, armed with information and dressed in orange ties and scarves, and went to House and Senate offices holding over 300 meetings with Members and their staffs.  The Public Policy Office staff thank everyone who participated either as an activist, a speaker, a volunteer, or in any other way!

Award Recipients.  Each year the National MS Society names a Governor of the Year, U.S. Senator of the Year, and U.S. Representative of the Year.  Senator Mike Johanns (R-NE) was named Senator of the Year for his leadership in promoting funding for the Congressionally Directed Medical Research Program for MS, helping secure $3.8 million in FY 2012.  Representative Barbara Lee (D-CA) is a longtime MS champion and not only introduces the MS Awareness Week resolution in the House each year, but she also authors the Adult Day Program legislation (one of our 2011 priorities) and always keeps people affected by MS in mind as she pursues policy objectives.  Governor Mark Dayton (D-MN) was named Governor of the Year because of his unwavering opposition to state legislation that would have resulted in a ban of embryonic stem cell research and crippled research efforts in the state, and harmed the growing bioscience industry.  As one of his first acts he authorized early enrollment in the Medicaid expansion under the Affordable Care Act, thereby expanding health coverage to an additional 95,000 Minnesotans.  Todd Adams, Legislative Director to Rep. Jim Langevin, was named Congressional Staff Person of the Year for his tireless work on behalf of people with disabilities and chronic illness.  He has been an MS Champion, just like his boss!

Newest MS Caucus Members.  So far we’ve added nearly a dozen new members to the Congressional MS Caucus – if one of your Members of Congress is on the list, send an email to say thanks and/or tweet your thanks to his/her Twitter handle.  The new members are:  Rep. Jesse Jackson, Jr. (IL-2), Rep. Pete Olson (TX-22), Rep. John Olver (MA-1), Representative Steve Stivers (R-OH), Rep. Dennis Ross (R-FL), Rep. Brett Guthrie (KY-02), Rep. Bob Turner (R-NY), Rep. Bill Cassidy, MD (R-LA), Rep. Steve Chabot (R-OH), Rep. Lynn Jenkins (R-KS), Rep. Robert Hurt (R-VA) – (he asked for the MS tie after agreeing!), and Rep. Paul Tonko (D-NY).  [The MS Society ties were a hit with one Congressman asking for enough so his entire staff can wear during MS Awareness Week next week!]

Leverage the work of MS Activists.  Visits to the Hill this week by activists were a huge success.  I joined the Illinois delegation and met with Assistant Senate Majority Leader Dick Durbin (D-IL) in his U.S. Capitol office where he firmly committed to research funding and respite care and asked for our help to get people to understand the impact of budget cuts on research.  Keep the momentum going and leverage the work of these activists by clicking here and sending your own message about our federal policy priorities!  Move to the Frontline!

Social Media.  We tweeted from PPC for the first time and used the hashtag #MSActivist so if you want to know how the conference flowed, just check the hashtag and you’ll get a real sense of it.  Also, we have simplified our blog address, making it something you can remember rather than have to look for – is the new address for the blog.  We have several stories from the conference about the sessions, interviews with activists like Navy veteran Donnie Horner who helped kick off the Day on the Hill, and other information.  Check it out and let us know what you think!
That’s it from DC – for all of those who joined us in DC, thank you – it was a wonderful conference.  And remember this weekend is daylight savings time where we lose an hour.  But that’s okay, the 320+ activists gave hundreds of hours with Congress, advancing the issues so important to people impacted by MS and truly helps our office leap-frog ahead!  We’ve had quite a bit of follow up to do in the past couple of days which is terrific!

The next Federal Fridays will come out after St. Patrick’s day so I thought I’d leave you with this statistic from Mary Woolley of Research!America:  Americans will spend $4.14 Billion on St. Patrick’s Day . . . that’s enough to fund MS research at NIH for over 25 years – something to think about when you’re having your morning coffee!


jillian hampton said...

I need help. I'm a 51 year old single mom with relapsing remitting ms for 10 years now. I finally have the texas gold card but my medical recods have beenb destruyed. I do not have a vehicle but I wish to be referred to the ms clinic at Ben Taub Hospital. The red tape is holding me up. Also I have never been treated for my condition and strobgly believe that my symptoms could benefit from medication. I would like to have the assistance of an advocate.

MS Activist said...


Thank you for getting in contact with us. To get assistance, call our Information Resource Center (IRC) at 1-800-344-4867. The Society's MS navigator can be reached through that phone number to help you with your various needs.

Please leave us your email next time so that we can contact you directly.

Thank you!

Dona Salter said...

I know that to have MS is to be generally frustrated, but this time my frustration is aimed outward. Recently, I took a Bioness L300 for a spin--it was AMAZING! I walked as if the past 10 years hadn't affected my legs at all! (I was diagnosed at age 38 in 1998 w/ secondary progressive MS but the Neurologists believe that I had my 1st exacerbation when I was 19.)Now, I'm finding out that Medicare only covers the L300 if you have spinal cord injury. I'm on permanent disability & live on less than $900./mo, so to pay out of pocket is impossible. Are there any gov't grants available to disabled women for this kind of thing? ANY funding would be appreciated, please just point me in the right direction.

MS Activist said...


Thanks for contacting us. To inquire about government grants available, please contact our Information Resource Center(IRC) at 1-800-344-4867. The Society's MS navigator can be reached through that phone number to help you with your various needs.

Please leave us your email next time so that we can contact you directly.

Thank you!