Friday, September 28, 2012


TODAY:  Presidential Forum on Disability Issues.  Edward M. "Ted" Kennedy, Jr., and Rep. Cathy McMorris Rodgers (R-WA) are speaking on behalf of their respective parties at the National Forum on Disability Issues (NFDI) to present their campaign's positions on matters relating to Americans with disabilities (see full press release). The event takes place between 12:30 p.m. and 3:30 p.m. Eastern, Friday, Sept. 28 in Columbus, Ohio. Invitations have also been extended to candidates from both parties for the U.S. Senate from Ohio, Sen. Sherrod Brown (D) and Republican nominee Treasurer Josh Mandel. Rep. Nancy Garland (D-New Albany) has confirmed her participation on behalf of Sen. Brown.

Closed for the Season.  Congress passed a 6 month temporary spending bill then headed for the hills for the rest of the election season with many expected a lame-duck session of Congress in order to attempt to avert the automatic spending cuts set to begin in January, and to stop some of the tax cuts from increasing on January 1.  In addition to the Bush-era tax cuts, there are many others including the payroll tax cut and tax credits for research and development.  Speaker John Boehner (R-OH) recently hunkered down with form Clinton chief of staff Erskine Bowles, co-author of the Simpson-Bowles deficit/debt reduction plan that is lingering in the wilderness, but one that there is more chatter about of late.  Defense Secretary Leon Panetta was pretty blunt in his desire to get a deal done and avoid sequestration.  This is a new website coming online to replace the original congressional legislative website, THOMAS (named after Mr. Jefferson).  Check it out at

Almost Over?  Well, not quite – there’s still more than a month left this election season and any of you in swing states (like Virginia) have seen and will continue to see an onslaught of campaign ads from the campaigns and the Superpacs.  In case you missed it, Governor Romney and President Obama appeared on 60 Minutes to discuss their visions – here’s a quick article about their appearances.  Anyone interested in blow-by-blow polling coverage should check out Nate Silver’s ‘Five Thirty Eight’ where he says there “looks to be about a 20 percent chance that Mr. Romney will win, but also about a 20 percent chance that Mr. Obama will actually beat his 2008 margin in the popular vote.’

Spectrum.  Fall is here and Congress has adjourned until after the election.  Speaking of the election, do you know where you fall on the political spectrum?  Here’s a fun tool to help you find out.

Sequestration FAQs.  As the calendar inches toward January 2013 when automatic spending cuts are set to begin, more and more information is coming out about the impact.  The Democrats on the House Budget Committee issued this FAQ.  I couldn’t find a GOP counterpart but if one is issued, I will pass along.  The House Budget Committee website hasn’t had much new material since its chair, Paul Ryan, became a VP candidate.

Insurance Coverage ImprovesKaiser Health has a chart showing that more people are insured in 20 states.

 Political Wire.  Are you a junkie for political news but don’t have time to peruse the zillion websites?  Well there’s a guy who gets to do that for a job and you can subscribe to his emails.  Taegan Goddard is with CQ/Roll Call and you can check his work out at Political Wire.

Open Enrollment.  The annual Medicare Open Enrollment Period is October 15 – December 7, 2012.  It is time for people with Medicare to compare plans and make sure they have the right health and prescription drug coverage. 

Our Blogs get Noticed!  Both the MSActivist blog ( and the National MS Society blog ( were named among the Top 18 MS Blogs by  And not to be outdone, the Carolinas Chapters Advocacy blog ( was also named among the top 18!  Kudos to all!

Health Care Cost Drivers.  The Bipartisan Policy Center, founded by several former Senate Majority Leaders of both parties, recently released a report detailing the cost drivers in health care.

Non-profits & Elections.  There are a wide variety of activities allowed for non-profits during an election season from voter registration to sponsoring candidate debates.  Here is a great summary from an attorney.

PCORI seeks input.  The Patient Centered Outcomes Research Institute (PCORI)  are inviting patients, caregivers and the broader health care community to complete a survey on its website to propose specific research questions. Each suggestion received will be evaluated through a selection process that will lead to targeted announcements for research funding.

Importance of Medical Research.  Former Senate Majority Leader Bill Frist (who is also a surgeon) penned this great piece about the importance of medical research and called out the National MS Society for its role in funding medical research separate from the government.  Kudos to everyone who raises money for the Society so this is possible!

FDA Office of Mobile Health.  Representative Mike Honda is introducing legislation to create this office within FDA.

Worst since 1774?  I just found this interesting and am not passing judgment on the matter but this article asserts that income inequality in the U.S. is worse now than before there was a United States.

Wednesday, September 26, 2012


This Friday, September 28th from 12:30 – 3:30 PM EST in Columbus, Ohio, the second National Forum on Disability Issues (NFDI) will take place!  The National MS Society is proud to be sponsoring the event along with over 80 other organizations.  

The venue is scheduled to be filled to capacity, but you can still register to watch the live webcast for free and join more than 2,000 people who have already registered!  To register for the live webcast that will be aired this Friday, September 28th from 12:30 – 3:30 PM EST click here.

The forum will be moderated by Frank Sesno, director of the School of Media and Public Affairs at the George Washington University.  He is a former CNN White House correspondent, anchor and Washington bureau chief.
The event’s speakers include Edward M. “Ted” Kennedy, Jr. and Rep. Cathy McMorris Rodgers (R-WA).  Each representative will represent their party’s campaign positions on matters relating to Americans with disabilities.
Invitations were also extended to Ohio Senator Sherrod Brown (D-OH) and Republican nominee Treasurer Josh Mandel.  Ohio State Representative Nancy Garland (D-20th) will be attending on behalf of Senator Brown.   
On Friday, each representative will be given 30 minutes to address topics such as employment, health care, long-term community-based services and supports, education, transportation, housing, and research.  During the first 10 minutes, the representative will present their party’s vision for the future of disability policies, followed by 20 minutes to respond to questions.  The questions will be presented by Sesno, the moderator, but have been generated by the disability community! 

This event is an excellent opportunity for you to get education on the disability policies of both Presidential candidates.  Take a moment and register now!  Once you register, click here to view the forum!

Tuesday, September 25, 2012


Today is National Voter Registration Day (NVRD)!  The National MS Society is partnering with NVRD to help you make a difference in the November 6, 2012 election.  NVRD is a non-partisan event aiming to get individuals registered to vote in the upcoming election. 

The U.S. Census reported that 6 million people (more than twice the population of Chicago!) failed to cast a ballot in the 2008 election because they either didn’t know how to register or they missed their local registration deadline (click here for your state’s registration deadline).  This year, NVRD is trying to make sure that no one is left out of the U.S. political process.  Since the 2010 Census, 15 million Americans have become eligible to vote.  Trends indicate that people with disabilities register to vote at a rate 16 percent lower than other Americans and that more than one in ten eligible voters has a disability. People with disabilities are a critical constituency and their voices must be heard!

Today, for NVRD, volunteers will be hosting events throughout communities across the U.S. aiming to register tens of thousands of voters online and offline in a single day! Do you think we can reach that goal?  You can click here to find a NVRD event near you!

Are you eligible to vote?  To be eligible to vote you must:

  • Be a U.S. citizen;
  • Be over the age of 18; and
  • Comply with state laws on residency, felony status, and mental competency.

Thirty states also have voter identification laws, which all voters must comply with.  Click here to find out more about your state’s voter ID laws. 

Visit the Society’s Election 2012 page for more information on the upcoming election.  It is important to register so that on November 6, 2012 you can cast your votes for U.S. President, U.S. House of Representatives, local and State elections, and in some states, the U.S. Senate.  We urge you to take a few minutes today to register to vote and make your voice heard on November 6th!

Thursday, September 20, 2012


Last week, the Society’s National Capital Chapter hosted the 34th annual Ambassadors Ball at the Ritz-Carlton in downtown DC.  The room was filled with Ambassadors to the U.S., members of the diplomatic corps, Members of Congress, MS Activists and MS financial supporters.

The black-tie gala—which includes a silent auction, dinner, and dancing—is co-chaired each year by the wives of federal legislators.  This year’s co-chairs were: Mrs. Annie Coons, wife of Senator Chris Coons (DE); Mrs. Melodee Hanes, wife of Senator Max Baucus (MT); Mrs. Nancy Camp, wife of Congressman Dave Camp (MI-4); and Mrs. Judy McCarthy, wife of Congressman Kevin McCarthy (CA-22). 

Congressman McCarthy dances with his wife, Mrs. Judy McCarthy, one of the co-chairs of the Ambassadors Ball (Photo credit: Stephanie Green/Bloomberg)

The silent auction was complete with donations from Ambassadors and their spouses including: travel packages, artwork, wines, and dinners at the Embassies; puppies; and sports paraphernalia among an abundance of other items.  The event is not only a fundraiser for the Society’s National Capital Chapter (it has raised more than $15 million over the past 34 years!), but the event honors the Washington Diplomatic Corps and Congressional leaders.  

This year, the National Capital Chapter honored Senator Robert Casey (PA) and Congressman Lee Terry (NE-2). 

Congressman Terry, a member of the Congressional MS Caucus, was honored for his support of MS research initiatives, support of the Lifespan Respite Care Program (a program supporting family caregivers) in 2006, and a co-sponsorship of the National Neurological Diseases Surveillance System Act.  Congressman Terry spoke at the event and shared his personal connection to MS through a story of a lifelong friend who is living with MS and the impact it has had on her, her family, and her community. 

Congressman Terry (Photo credit: Betty Adler Photography)

Senator Casey, a longtime member of the Congressional MS Caucus and a co-chair in the 112th Congress, was honored for his dedication to the Congressional MS Caucus as well as his support for the Lifespan Respite Care Program, the National Neurological Diseases Surveillance System Act, and MS research funding in both the Congressionally Directed Medical Research Programs (CDMRP) and the National Institutes of Health (NIH).  

Senator Casey (Photo credit: Tracy Timmester, Timmester Photography)

A special thanks goes out to all of the Ambassadors, Members of Congress, and of course the wives of the federal legislators who co-chaired the event! 

Wednesday, September 19, 2012


Last week, federal legislators returned to D.C. after a busy August Recess!  During recess, MS Activists across the country met with nearly 60 offices to bring attention to the funding priorities of the MS community.  These priorities included: MS Research funding in the Congressionally Directed Medical Research Programs (CDMRP); funding for the National Institutes of Health (NIH) and funding for the Lifespan Respite Care Program that supports family caregivers.  This week, Congress is expected to pass a "Continuing Resolution" that will delay establishing final funding levels into early next year. Visits by MS Activists are still vital and help legislators stay informed on issues important to the MS community.  We’ve shown you some pictures from these visits and here’s another!

One of the August Recess visits was a visit from the Society's South Central Region with Congressman Pete Olson (TX-22), a member of the Congressional MS Caucus.  On August 28th, Congresman Olson and his district staff member, Trey, met with MS Activists and had an informed discussion about the improtance of MS Research funding.  Congressman Olson, his wife, and Trey and his wife have all ridden in the BP MS 150!  The BP MS 150 is a two-day 180 mile fundraising cycling ride, beginning in Houston, Texas and finishing in Austin, Texas. 
In the photo (left to right): Susan Newman (MS Activist), Alicia Barron (MS Society staff), Ron Brannigan (MS Activist), Congressman Pete Olson, Andrea Carter-Virtanen (MS Activist) and Jeff Armbruster (MS Activist).
We hope you've enjoyed the pictures of MS Activists with their members of August Recess. Thank you to all of the MS Activists who met with legislators and e-mailed us photos, as well as the legislators who took time to meet with the MS Activists!

Friday, September 14, 2012


BREAKING (Soon):  White House Sequester Report.  I had hoped to be able to send you the link to the Administration report regarding the sequester but as of ‘press’ time, the report hasn’t been released.  Watch for news coverage of it later today.  It should be quite insightful as it will detail how the sequester cuts will impact various federal agencies.  Already it is estimated that the National Institutes of Health would have to no longer fund, or provide initial funding, to over 2000 research proposals.

FDA Approves New MS Drug.  The U.S. Food and Drug Administration has approved teriflunomide once-daily pills (Aubagio,® Genzyme, a Sanofi company) to treat relapsing forms of MS. This is the second oral disease-modifying therapy approved for the treatment of multiple sclerosis. The therapy is expected to be available for prescription by October 1, 2012 in the U.S.

National Capital Chapter Ambassadors Ball.  This week the public policy office attended the 34th Annual Ambassadors Ball on Wednesday night.  The event honored Senate MS Caucus Co-Chair Senator Bob Casey and Congressman Lee Terry for their work on behalf of people with MS.  A large number of Ambassadors and members of the diplomatic core joined Members of Congress, MS Activists, and MS financial supporters.  The event started with a somber note when Senator Casey read a moving statement from President Obama about the death of the U.S. Ambassador to Libya which occurred the day before.

The Honorable Lee Terry, Congressman from the 2nd Congressional District of Nebraska, was honored for his support of MS research initiatives.  Congressman Terry is a member of the Congressional MS Caucus and a supporter of the Lifespan Respite Care Program in 2006.  He is also a co-sponsor of the National Neurological Diseases Surveillance System Act.  Congressman Terry shared his personal story of a lifelong friend who is living with MS and how he has seen it affect her, her family, and her community.  (Photo credit Betty Adler Photography)

The Honorable Robert Casey, Senator from Pennsylvania, was honored for his work on the Congressional MS Caucus as a longtime member and co-chair in the 112th Congress, as well as his support of the Lifespan Respite Care Program, the National Neurological Diseases Surveillance System Act, and MS research funding in both the Congressionally Directed Medical Research Programs and the National Institutes of Health.  (Photo credit Tracy Timmester, Timmester Photography)
Medical Research $$ in your State.  United for Medical Research has a great website that allows you to click on your state and find out the impact medical research has on your state’s economy.  While attending an event yesterday I heard NIH head Frances Collins make the point about how not only is this research necessary and important, but as it relates to the economy, it provides one of the greatest leverage for economic growth of any spending.

Joshua’s waiting for 2014.  Georgetown is posting stories about the impact various provisions of the health reform law will have and in this post, it talks about how the law will impact little leaguer Josh who was born with a heart condition with a fatality rate of 100%.

Kick the Can – it’s not just a kid’s game.  Congress has returned to Washington and serious conversations are happening about the various scenarios that could result from the November election and the resulting impact on budget negotiations.  Congress once again passed a temporary measure funding the government for the next six months..  Sequestration is set to begin on January 1, 2013 so what Congress does during a lame-duck session will matter and now Rep. Ryan’s position on sequestration is getting renewed attention.  A commentator at CNNMoney penned a piece about yesterdays announced actions by the Federal Reserve entitle the Fed Acted Because Congress is Lame and I don’t think he was projecting ahead to the lame-duck session post-election.

Obamacare – yes?  No?  Governor Romney has repeatedly indicated that there are two provisions of the health law that he’d like to maintain if president (pre-existing conditions and coverage up to age 26) however those comments have taken on new steam as the election nears.  Running mate Rep. Paul Ryan indicated he supported the ‘maintenance of effort’ provision of the law.  Both candidates have spent some time recently clarifying their views on Obamacare.

500,000.  That’s the number of jobs predicted to be wiped out should Medicare cuts happen.  In the meantime it’s being predicted that our health care system needs 260,000 more nurses by 2015!

Medicare Part D Enrollment Dates Announced.  October 15, 2012 to December 7, 2012.

MLR & Rate Review.  Earlier it was reported that insurers were rebating well over $1 billion in premiums due to the health law provision mandating that a set percentage of premium dollars be spent on providing care.  Now HHS reports that another billion has been saved for consumers due to the rate review provision of the law.  On another note here is an article with ACA and Insurance Q & A you may find of interest.

3/4ths of a Trillion dollars.  That’s how much the Institutes of Medicine says was wasted last year with inefficient health care usage.  “If home building were like health care,” says a new Institute of Medicine report, “carpenters, electricians, and plumbers each would work with different blueprints, with very little coordination.”

Rural & Underserved Access.  The National MS Society continues its work to expand access in rural and underserved areas of our country.  There are many established efforts consistent with our goals including this school based effort targeted for children.  In California there is a legislative effort afloat to woo doctors to underserved areas.

Veterans.  Did you know that the VA has a diagnosis care sheet about vets with multiple sclerosis?  You can see it here.  Also, the National MS Society recently sent a letter of support to Congressmen Charlie Rangel and Glenn Thompson for their bipartisan legislation,  H.R. 6107, the Veterans E-Health & Telemedicine Support Act of 2012 which expands access to telemedicine by removing outdated location requirements so that a vet in Oklahoma can see a doctor in Texas via telemedicine and the doctor’s Texas licensure is sufficient.  Also the VA and HHS announced additional expanded access for veterans in rural America.

Good Health Care News.  Good news this week in that the number of uninsured Americans dropped by over 1.3 million people according to the U.S. Census.  The provision allowing young adults to stay on parent’s coverage until age 26 was credited as partial explanation for the drop.  Also, health insurance premium increases were among the lowest in a long, long time.

The Golden Arches.  How many of us remember one or more of the classic McDonald’s theme songs from McDonald’s is a happy place or the ‘two whole beef patties, special sauce . . .’?  Well, now we will know how many calories are in every McDonald’s item and the good news is that the Big Mac is not the biggest calorie item!

Also, anyone who has photos from visits with their Senators or Representatives are asked to email them to  Thank you!

Wednesday, September 12, 2012


Donna competing during the 2012 Paralympics
Just before the 2012 Paralympics were about to begin in London, we shared the story of Donna Ponessa—a woman with MS and a member of the U.S. Paralympic Equestrian team.  After the games concluded, we received an e-mail from Donna with photos from the London competition!  Here’s what Donna shared from her experience:

“Although I didn't achieve my goal of coming home from the Games with at least one medal, I certainly am not coming home empty handed. This Paralympic experience has been golden beyond description. Not only did I learn what it takes to compete on par with the Para-Dressage elite, I learned that to perform at their level is within my reach. 

As a child, my biggest aspiration was to be a groom for a horse and rider team showing at the National Horse Show (when it was held at Madison Square Garden). Who would have EVER thought that after living for almost 3 decades with an aggressive disability that I could still be called an equestrian athlete and have a decent showing at a Paralympic event!...

For the last 2 years I wondered how I would feel on Sept. 5th, 2012 (the competition ended on the 4th). It was an average day in several ways: I went to the gym, went to the barn. It was anything but average in others: I strolled to Greenwich Market with some friends and ate organic ice cream while sitting in the London sun, I then took the "tube" (London Subway) back to the Olympic Village and watched with my fellow countrymen the USA triumph over Great Britain in Quad Rugby. 

Reflecting back on this last week, I remain in awe of the experience that I just encountered with the best of the best in the world of Para Dressage.  I remain oh so proud [to] have been given the opportunity to be a part of the team selected to represent the country I so very much love.  

While I will continue to savor this journey and bask in its glory, I am full of child-like anticipation as I begin to plot my path to the next quest. Yes, Life IS good!”

Donna after the Freestyle event

Congratulations, Donna!  You can click here to see Donna’s event results.  We are all proud that you represented the U.S. and the MS community at the 2012 Paralympics!