Friday, August 31, 2012


From August 6th to September 7th, members of the U.S. House of Representatives and Senate are back in their home states for August Recess.  MS Activists, including those living with MS, from around the country are taking the opportunity to meet with their legislators to discuss funding priorities for the MS community including MS Research funding in the Congressionally Directed Medical Research Programs (CDMRP) and through the National Institutes of Health (NIH); and funding for the Lifespan Respite Care Program that supports family caregivers.  While Congress is likely going to delay final funding levels until early next year by passing a “Continuing Resolution,” these visits keep momentum going and focus on the MS community.

Activists are also using this time to encourage their federal legislators to be involved with the Society through Walk events and to show their commitment to developing policy solutions for people affected by MS by joining the Congressional MS Caucus. 

Here are a few pictures from August Recess visits from the Society’s South Central Region!

Meeting with Representative Gene Green (TX-29), a member of the MS Caucus and the important Energy and Commerce Committee, was MS Activist Jeff Armbruster (right) and MS Society Staff Alicia Barron (left). 

In another August Recess visit by the South Central Region, MS Activists Preston Walker (center) and Tracy Penley (right) met with Barbara Ragland (left)—District Director for Representative Kay Granger (TX-12) who sits on the powerful Appropriations Committee. 

Thanks to all the MS Activists taking time during August Recess to meet with the legislators to discuss issues critical to creating a world free of MS!  If you have pictures from your August Recess visits, share them by e-mailing them to

Thursday, August 30, 2012


Beginning Thursday, September 6th, the Centers for Medicare and Medicaid Services (CMS) is hosting free regional teleconferences for the public.  The teleconferences will focus on the latest updates on implementation of the Affordable Care Act (ACA) Health Insurance Marketplace (Exchanges). Starting in 2014, health insurance exchanges will allow individuals and small businesses to compare health plans, get answers to questions, find out if they are eligible for tax credits for private insurance or health programs like the Children’s Health Insurance Program (CHIP), and enroll in a health plan that meets their needs. These teleconferences are a great way to get ahead of the curve and learn about expanded insurance coverage options that will be available down the road.

Each teleconference is listed for a particular region, however if you are unable to attend the date for your region, you may attend the teleconference for any other region.  Advance registration is required.  See the information below for details and a registration link for each of the ten teleconferences.

Thursday, September 6, 2012
1:00 PM – 3:00 PM EDT
Chicago Region (Illinois, Indiana, Michigan, Minnesota, Ohio, and Wisconsin)

Friday, September 7, 2012
1:00 PM – 3:00 PM EDT
Seattle Region (Alaska, Idaho, Oregon, and Washington)

Monday, September 10, 2012
3:00 PM – 5:00 PM EDT
Denver Region (Colorado, Montana, North Dakota, South Dakota, Utah, and Wyoming)

Tuesday, September 11, 2012
10:00 AM – 12:00 PM EDT
Boston Region (Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, and Vermont)

Wednesday, September 12, 2012
10:00 AM – 12:00 PM EDT
Atlanta Region (Alabama, Florida, Georgia, Kentucky, Mississippi, North Carolina, South Carolina, Tennessee)

Wednesday, September 12, 2012
2:00 PM – 4:00 PM EDT
Kansas City Region (Iowa, Kansas, Missouri, and Nebraska)

Thursday, September 13, 2012
10:00 AM – 12:00 PM EDT
Philadelphia Region (Delaware, District of Columbia, Maryland, Pennsylvania, Virginia, and West Virginia)

Thursday, September 13, 2012
2:00 PM – 4:00 PM EDT
New York Region (New Jersey and New York)

Friday, September 14, 2012
10:00 AM – 12:00 PM EDT
Dallas Region (Arkansas, Louisiana, New Mexico, Oklahoma, and Texas)

Friday, September 14, 2012
1:00 PM – 3:00 PM EDT
San Francisco Region (Arizona, California, Hawaii, Nevada, and Pacific Territories)

Wednesday, August 29, 2012


Today, in London, the opening ceremonies for the 2012 Paralympic Games are underway with the lighting of the Paralympic Flame witnessed by delegations from around the world. For the next 11 days, 4,280 Paralympic athletes from around the world—including an American athlete living with MS—will compete in 21 sports to vie for more than 500 gold metals.

The U.S. Delegation is led by U.S. Army General Martin E. Dempsey, 18th Chairman of the Joint Chiefs of Staff. The other members of the U.S. Presidential Delegation are the Honorable Louis B. Susman, Ambassador of the United States to the United Kingdom of Great Britain and Northern Ireland; the Honorable Lisa P. Jackson, Administrator, Environmental Protection Agency; Mr. Kareem A. Dale, Special Assistant to the President for Disability Policy, The White House; and U.S. Olympic and Paralympic medalists Ms. Jean Driscoll, Ms. Sharon Hedrick, and Mr. Larry T. Hughes.

Among the Paralympic Equestrian riders from 26 nations is American rider Donna Ponessa—accomplished athlete and MS Activist who was diagnosed with MS more than 25 years ago. Donna, who is paralyzed from the chest down and relies on a ventilator to breathe, and her horse Western Rose (aka “Rosie”) are scheduled to compete in multiple events beginning August 30th. To follow Donna’s event schedule and progress through the competition, click here to see her profile on the Paralympics website!
MS Activist and Paralympic Athlete Donna Ponessa

“To say that it has been a challenge to compete at this level with my MS is an understatement,” Donna says. “Yes, the MS does complicate things and can make things so much more difficult.  While I refuse to let it define my life, it is an integral part of it and I have to deal with it.  Despite it, I remain 100% committed to living life to its fullest and on my terms.”
Donna has been active in her local Society Chapter for 10 years. She works tirelessly for disability rights, while working for an independent living center, and volunteering for the National MS Society. Debby Bennett, VP of Programs and Services for the NYC-Southern New York Chapter, says that as an activist, Donna “has developed strong relationships with legislators; lobbying in the state Capitol, providing testimony at hearings and giving voice to people who need one.”
Congratulations and good luck to Donna, the rest of the U.S. Paralympic Team, and all of the Paralympic Athletes! Let the games begin!

Tuesday, August 28, 2012


Advocacy is empowering. Advocacy drives change. Your connections count and your story can make a difference. Advocacy is something everyone can do.

You know this because you are an MS Activist. As an MS Activist and an ambassador of activism’s value, we urge you to share this video about the importance of activism through your social media networks—on Facebook, Twitter, and blogs. Others in your network may realize that they too can be an MS Activist.  

Share this video, along with the message that activism is something that everyone can do and that it has a real world positive impact on people affected by MS. At the state and local levels, MS Activists are working to tackle the high cost of disease modifying therapies, to create and to preserve state income tax credits for accessible home modifications, and to strengthen accessible parking laws.

At the federal level, MS Activists have recently helped add an aggressive form of MS to the Social Security Administration’s "Compassionate Allowances Initiative" so that some people with MS can get disability benefits quicker. MS Activists also helped secure an additional $3.8 million to fund MS research through the Congressionally Directed Medical Research Programs (CDMRP), bringing the total amount allocated over five years to MS research through the CDMRP to more than $20 million.

Our MS Activist network is now over 70,000 strong and growing every week. Help make it even stronger by sharing this great video that features MS Activists from around the country speaking from the heart and sharing their story about what activism means to them. We are all MS Activists. Together, we will move closer to a world free of MS.


New MS Activist Video!  The National MS Society just released this MS Activist videocheck it out!  And remember to tweet with the hashtag #MSActivist and follow our office on Twitter @MSActivist.

MS Ambassador & the Olympics.  Our hat’s off to Missy Franklin, niece of Doug Franklin, President of the Multiple Sclerosis Association of America (MSAA) and president of the MS Coalition.  Missy came back from London with four gold medals and one bronze, along with a world record in the 200 meter.  Missy is an MSAA Swim for MS Ambassador.

Boring . . . where?  There have been multiple whirlwinds circling our political system from skinny-dipping in Israel, foot-in-mouth disease among candidates, and a rest stop problem in Northern Minnesota for a state legislator.  Add to that Rep. Paul Ryan and Vice President Joe Biden and you have quite an un-boring political season!

CMS Teleconferences.  The Obama Administration is working double overtime on public forums, webinars, teleconferences regarding Affordable Care Act implementation.  Some are for the public, even more are for stakeholders in exchange planning, essential health benefits, other nitty-gritty implementation stuff.  See the attached for info on teleconferences to be run by CMS Regional Offices on Exchanges. We’re getting the word out as much as possible.

NIH Impact.  The National Institutes of Health has a new website that highlights the impact medical research has on human health and on the economy.

Voting Access.  There is an increasing focus on how various ballot measures and recently enacted legislation regarding voting will have on the disability and elderly communities.  Here’s a recent article about it.

Paul Ryan.  As you all know, House Budget Committee Chair Paul Ryan has been selected to be Gov. Romney’s running mate which has generated huge amounts of publicity about Rep. Ryan’s plan for Medicare, his support of Pres. Bush’s Social Security plan, and the federal budget Ryan passed on the House floor.  This recent article discusses how Ryan’s Medicare plan would impact the disabled.  A recent poll suggests that the public believes Medicare needs only modest changes, if any changes at all.

Medicare ‘cuts’.  If you’re in a swing state like Virginia, you’ve been barraged with pro- and anti- Obama and Romney.  A big push by Romney focuses on the $716 billion in Medicare cuts due to the Affordable Care Act (with Team Obama countering that there are no cuts, it’s a reduction in expenditures in the future and does not impact patients).  One journalists writes about a Brookings Institute economist’s view that restoring that money will mean more cost to the patient.  The Medicare debate is also having an impact on U.S. House races.

Entitlement Spending on the Rise.  The Congressional Budget Office just released a report stating that Medicare spending will rise from 3.7% to 4.3% of GDP by 2022; Medicaid spending will rise from 1.7% to 2.4% of GDP; and Social Security will rise to 12.2% of GDP.  Combined, these three programs will account for 55% of all Federal spending by 2022.  But after all of this the CBO proclaimed that Medicare spending is growing slower than expected!  I guess that makes sense . . . conclusion being that more than 55% of all spending would be for these programs if Medicare spending was growing ‘as expected.’

Convention Season.  There are storms on the horizon for Republicans and Democrats . . . no, I’m not referring to recent controversies in the press.  The GOP convention begins Monday in Tampa then a week later the Democrats meet in Charlotte.  Both events are on hurricane watch.  And for those of you planning to trek to DC in January for the inaugural, hotels are already putting out ‘inaugural deals.’

Fiscal Cliff.  The game of chicken continues as we walk forthrightly toward the so-called fiscal cliff.  It’s highly unlikely that Congress and the Administration will find any resolution until after the November elections.  In the meantime the CBO continues its analyses and recently predicted that if we go over the cliff, we will go into a ‘deep recession.’

County Health Calculator.   Robert Wood Johnson foundation developed one and you can check it out here.

1766.  Did you know that (according to Wikipedia) the first political convention held in America took place in Hartford, Connecticut in March 1766. The meeting was organized by the Sons of Liberty, who, in challenging incumbent governor Thomas Fitch, nominated William Pitkin for governor and Jonathan Trumbull for deputy governor.

Wednesday, August 22, 2012


Dr. Charles L. Bassman with his wife, Mickey
It is with great sadness that we share the passing of Dr. Charles L. Bassman (Chuck). Chuck was a member of the Greater Delaware Valley Chapter’s South Jersey Government Relations Committee and was a passionate and tireless advocate for both federal and state issues. Chuck was most proud of being inducted into the National MS Society’s Volunteer Hall of Fame for Advocacy in 2008 with his wife, Mickey.
Chuck was an avid beach lover and he and Mickey led the charge to secure disability-accessible beach access in their community. They were successful in their efforts to make the beaches accessible in Margate City, NJ. The city also has invested in a loanable sand wheelchair to help people with disabilities reach chairs near the ocean.
A psychologist, Chuck was a kind and gentle person and was deeply committed to making a difference for those living with MS, a disease he battled for 12 years. Chuck would volunteer at every event and talk to anyone about the importance of advocacy. He will be deeply missed by all.

Tuesday, August 21, 2012


The U.S. Department of Health & Human Services (HHS) is providing free Webinars, Fact Sheets and more to help explain the health care reform law (the Affordable Care Act) to the public--in both English and Spanish. 

This afternoon, August 21st, at 2:00 pm ET there is a National Webinar to tour  This is an all-inclusive website on health care reform.  Registration is required.  Click here to register!

Next Tuesday, August 28th at 2:00 pm ET there is a National Webinar in Spanish titled “The Health Care Law 101”.  Registration is required. Click here to register!

Click here for a list of the Webinars so you can learn more about the Affordable Care Act!

Monday, August 20, 2012


Recently, Representative Ann Marie Buerkle (NY-25) introduced legislation (H.R. 6218) to better coordinate autoimmune disease efforts among Federal agencies.  Her legislation, the "Mary Colella Autoimmune Disease Awareness Act of 2012" was inspired by her late sister, Mary Colella, who lived with multiple sclerosis.  Rep. Buerkle introduced the legislation to help increase awareness and education about autoimmune diseases.  The legislation would create the Autoimmune Disease Interdepartmental Coordinating Committee and requires an assessment of national progress to autoimmune disease research, an update of the national strategic plan, and recommendations to develop a national curriculum on autoimmune diseases.  Introduction of the bill was recently featured on the local upstate New York news.  
Prior to her election Rep. Buerkle worked as a nurse and later attended law school and became an attorney.  The National MS Society supports H.R. 6218 and has urged members of the Congressional MS Caucus to co-sponsor the bill.  Thank you, Representative Buekle, for bringing attention to the needs of those with autoimmune diseases!

Wednesday, August 15, 2012


A recent report (click here to read it) from the Commonwealth Fund identifies California, Colorado and Maryland as among the first states to enact legislation establishing health insurance exchanges called for in the in the Affordable Care Act!

Exchanges are new web-based marketplaces that will be set up in each state for buying health insurance, although some states will make use of a federally-run exchange instead.  Through the exchanges, individuals and small businesses will have choices of different plans and be provided with information to help them understand their options.

In Colorado, the National MS Society, in collaboration with the Chronic Care Collaborative, is actively engaged in the development of its health insurance exchange to help get more Coloradans health coverage!  Society chapters in other states are working with their coalition partners and activists on planning for their exchanges as well.  

Among the key areas of discussion are:  

1) Coverage:  Federal law requires that insurance plans available through state exchanges provide coverage in ten areas called “essential health benefits” to help ensure comprehensive care and services.  

2) Navigators:  Health benefits exchanges will also include navigators to provide direct services to consumers.  It is vital that these representatives be easily accessible and knowledgeable about health insurance plans and other resources for consumers.

3) Funding:  Federal grants are currently funding development of the state exchanges.  However this support is not ongoing, and exchanges must find alternate sources of funding to operate in future years.  

The Colorado Health Benefits Exchange (abbreviated as COHBE) was created by bipartisan legislation in 2011.  COHBE is an independent organization not managed by the state government, but responsible for the creation and implementation of the exchange.  You can find more details about COHBE from the Colorado Department of Insurance here.

Colorado is a national leader when it comes to the implementation of its exchange.  COHBE has successfully applied for the appropriate federal grants and it has developed workgroups to address the policy and technical decisions necessary for creating the exchange. 

Monday, August 13, 2012


Congress is now officially on summer recess, holding town meetings and other public events to talk with constituents about what’s going on in DC.  This is a terrific opportunity to talk with your elected officials about issues important to the MS Community!  Upon returning after Labor Day, the House will only have about 8 legislative days for the remainder of the year so whatever they will accomplish, they’ll have to do fast!

CRPD UPDATE:  The Convention on the Rights of Persons with Disabilities (CRPD) did not have a vote on the Senate floor yet – thank you to everyone who contacted their Senator on this!  The goal is to get a ratification vote in September when the Senate returns.  For anyone having a meeting with a U.S. Senator or his/her staff during August recess, feel free to bring this leave behind, highlighting our support for the treatyBut remember, this is ONLY for Senators, not Representatives.

Health Reform Interactive Map and Infographic.  The Commonwealth Fund recently announced creation of an interactive map of each state and its progress with regard to health insurance exchange development. has an Infographic about how States are sprinting toward Benchmark Plan Decisions.

State Health Facts.  There’s a great website that allows you to find health facts about each state, either by state or category.  Check it out here.

Medicare/ACA Facts and Fiction.  The Center for Medicare Advocacy has compiled a list of falsehoods that have spread far and wide about Medicare and the health reform law.  Myths from ‘death panels’ to illegal aliens getting free health care are all de-bunked.

One Trillion Dollars.  That’s how much money was saved over the past decade due to availability of generic drugs according to this study.

Telehealth.  Massachusetts became the 16th state to enact legislation requiring re-imbursement of telehealth services.

Autoimmune Disease legislation.  Last issue I mentioned that Rep. Ann Marie Buerkle and Rep. Carolyn Maloney had introduced the Mary Colella Autoimmune Disease Awareness Act of 2012.  It now has a bill number – HR 6218. 

Short film about MS. produced a short film about a young man who chose to break up with his girlfriend because he was diagnosed with MS, rather than tell her about it and work through it together – there’s more though, you can watch it here.

Bipartisan Call to Action.  Former Senate Majority Leaders Tom Daschle (D) and Bill Frist (R) recently penned this piece about the need to for affordable health care and the need to work together to solve our health care problems.  One can only hope the sentiment starts to spread.  Frist and Daschle lead the Bipartisan Policy Center which recently held a day-long seminar on the aftermath of the Supreme Court decision, Medicaid-expansion, and other related health care issues.

Consider listening instead of reading. The Internet offers thousands of audio files on every topic imaginable. Audio books are a popular download. Many audio books are released at the same time the print edition is published. The National Library Service for the Blind and Physically Handicapped of the Library of Congress provides many services to people with visual or physical disabilities, who may borrow audio books, magazines and equipment free.  This information is now posted to the National MS Society site as well.

U.S. Dominance in Medical Innovation on the slide.  The CEO of Lilly wrote a sobering piece on how America is slipping in terms of medical innovation and what the future holds if we don’t reverse this trend.  In another opinion piece it talks about the New Frontier (investments in science, space, etc.) and the Great Society (Medicaid, Medicare, etc.) and the need for the ‘parents’ (Democrats) to spearhead ‘fixing’ things, noting that the New Frontier initiatives are being starved and the crown jewel, NASA, is just a shell now.  Agree or not – it’s an interesting piece.

Sequestration and finding Cures.  FasterCures posted this to their blog talking about how the proposed automatic spending cuts, or sequestration, could impact efforts to find cures.  The chair of the Senate Health, Education, Labor & Pensions Committee recently released a report detailing how sequestration will impact non-defense sectors.

Serving Medicaid Population.  A recent report states that nearly one-third of physicians will no longer accept Medicaid patients.  New Jersey had the nation’s lowest rate of doctors taking new patients at 40%, while Wyoming had the highest, at 99%, according to a survey last year of doctors by the U.S. Centers for Disease Control and Prevention.

Gaps in Coverage.  The Commonwealth Fund reports on gaps Americans have in their health care coverage.  Eighty-nine million people— 36.3 percent of Americans ages 4 to 64—were uninsured for at least one month between 2004 and 2007, including 23 million Americans who lost coverage more than once.

Electoral Vote Tie?  Did you know that there are essentially 97 different scenarios under which the vote for president in the electoral college could be a 270-270 tie?  Pretty interesting read for you political junkies!

Twoosh.  The President coined the term for a master twitterer playing of the Nike ‘swoosh’ – who know if it will catch on, but if you tweet, be sure to follow @MSActivist!  There’s no future in ‘twoosh’ for the president unfortunately since it’s already an App!