Friday, December 28, 2012


From left: U.S. Representative Eshoo, House Minority Leader Pelosi, Al Pross, and Stewart Ferry

Throughout 2012, MS Activists have contacted their legislators on Capitol Hill, participated in Society events, and met face-to-face with legislators at the state and federal levels during the Public Policy Conference, state action days, and in-district visits.  All of these actions are important to raising awareness about MS, supporting programs and services for persons with MS and their families, and helping fund research to find a cure for MS.  This year alone, more than 15,000 MS Activists have sent roughly 30,000 messages to their legislators on Capitol Hill, urging them to support issues important to the MS community.

One MS Activist who met with key legislators this year is California MS Activist Al Pross. Al started his career in politics in 1963.  Throughout his career, he worked for eight different legislators, ran campaigns, directed clinical action committees, lobbied, and consulted for various organizations regarding lobbying and political action.

In October of this year, Al met with House Minority Leader Nancy Pelosi (CA-8) and U.S. Representative Anna Eshoo (CA-14), a member of the MS Congressional Caucus, in Representative Pelosi’s San Francisco office.  Al has known Representative Pelosi, who is his U.S. Representative, since working together in the early 1980s.  Al and Stewart Ferry, the Society’s Director of Public Policy in California, met with Representatives Pelosi and Eshoo for about an hour and discussed the importance of continuing to fund MS programs in the context of the fiscal cliff.

In 1996, Al was diagnosed with Primary Progressive MS.  By 2000, he was unable to walk or stand and was using a wheelchair.  At that point, Al became involved with MS activism and has stayed heavily involved since.  Al has raised money for Walk MS and been a member of the Government Relations Committee for the Northern California Chapter.

“Having been involved in politics my entire professional career, I know first-hand the value of contacting, getting to know, and supporting if it is justified your Members of Congress and your state legislatures,” Al says. “Always keep in mind that all politics is local. Getting to know your local city council and county supervisor is a good start since at some point they’re likely to become members of the legislature or of Congress.”

Thank you, MS Activists for all of your hard work in 2012. Happy New Year!

Monday, December 24, 2012


Senator McCain, former Congressman Tony Coehlo, Senator Harkin, Senator Barrasso, and Senator Collins join in honoring Senator Bob Dole

On December 4th, the day after the International Day of Persons with Disabilities, a crowded room of persons with disabilities and advocates gathered in the Dirksen Senate Office Building to celebrate the lifetime service of Senator Bob Dole. His Senate colleagues joined together in a bipartisan fashion to honor Senator Dole as a veteran, Senator, Presidential Candidate, and friend. Senators Barrasso, Collins, Harkin, Kerry, and McCain each took a turn sharing their own stories of working with Senator Dole. Senator Dole’s wife, former Senator Elizabeth Dole joined him at the front of the room and also addressed the audience. Other Senators and former U.S. Attorney General Dick Thornburg attended the event to show support for Senator Dole.

Senator Kerry addressing Senator Dole

The Society joined the U.S. International Council on Disabilities (USICD) and over 50 other organizations in hosting the event. At the end of the event, John Kemp, President and CEO of Abilities! and Marca Bristo, President and CEO of Access Living and President of USICD, presented an award to Senator Dole for his service to the disability community throughout his career.

Senator Dole, who served in the U.S. Senate from 1969 to 1996 from Kansas, is himself a veteran with a disability. In his own words, Senator Dole has said that “it was an exceptional group I joined during World War II that no one joins by personal choice. It is a group that neither respects nor discriminates by age, sex, wealth, education, skin color, religious beliefs, political party, power or prestige.”

Throughout Senator Dole’s time in the Senate, he supported such legislation as the Individuals with Disabilities Education Act (IDEA) of 1975, the 1986 Air Carriers Access Act, and was a leader of the Americans with Disabilities Act (ADA) of 1990. Senator Dole’s work has helped reduce barriers and improve the quality of life for Americans with disabilities. Most recently, Senator Dole has been a strong champion for ratification of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Throughout Senator Dole’s career he has been a champion for the rights of persons with disabilities. For that, we thank him.

Friday, December 21, 2012


BREAKING NEWS:  New Co-Chair of the Congressional MS Caucus.  Maryland Congressman Chris Van Hollen has agreed to become the new co-chair of our caucus.  He and fellow co-chair Congressman Michael Burgess, MD, already have a strong working relationship on MS issues because they are the two lead authors of the Neurological Disease Surveillance System Act.  Van Hollen is also co-chair of the Congressional Caucus on Parkinson’s Disease.

Sen. Dan Inouye (D-HI).  The Senate lost its second longest serving senator in the history of the United States and the one individual who has represented the state of Hawaii since it was first admitted into the Union as a state; first in the House, then the Senate.  Sen. Inouye passed away this week with his final word being ‘Aloha’.  He served with 412 Senators including 218 Democrats, 189 Republicans, 1 Independence Party, 3 Independents, and 1 Conservative according to an analysis by Smart Politics.  He served with more Minnesotans (14) than senators from any other state.  He was also a decorated World War II veteran – his Wikipedia page covers the event that earned him the medal of honor. 

Latest on the Fiscal Cliff talks.  Washington is saturated with fiscal cliff talk.  The two primary negotiators are President Obama and Speaker Boehner.  The latest offer on the table includes allowing taxes to increase on people earning $400,000 or above along with over $700 billion in cuts to entitlement programs (over 10 years).  The Washington Post has two great tools – one is a graphic of the various proposals to date and they also have an interactive tool so that you can try to come up with a solution yourself.  Christmas is fast approaching and with each hour and each day that passes without a deal, the more likely Congress won’t enact anything by December 31.  The world of course won’t end (that’s supposed to happen today), however the markets will likely speak loudly after the first of the year.  Already dozens of CEO’s from our largest companies have told Washington to make a deal, get this done, and do not let the fiscal cliff happen and they have also said that tax rates need to increase as part of a compromise.  Physicians are one group who are likely to feel an extra sting from the fiscal cliff since Medicare provider reimbursements will fall another 2%.  As of this writing, Speaker Boehner’s attempt to create some leverage by passing a bill only letting taxes rise on those making $1 million or above failed at the hands of his own caucus, weakening his negotiating power according to many.

Disability Treaty Fails.  By now you’ve heard that the U.N. Convention on the Rights of Persons with Disabilities failed to receive enough votes in the Senate to secure ratification – it fell five votes short.  Majority Leader Reid and Foreign Relations Committee Chair Kerry (who I just read is Secretary of State-designate, pending Senate confirmation) have said they plan to bring it up for another vote in the next Congress however it’s clear that proponents need to re-double efforts to explain how the treaty is truly a benefit for Americans in order to secure enough GOP votes for the treaty.

New Health Reform Guide from Consumer Reports.   “Health Reform: Seven Things You Need to Know Now,” to help consumers understand how the biggest changes brought about by the Affordable Care Act will affect them now and in the future. The new guide tackles topics such as “new protections and benefits,” “what to expect in 2014,” and “a new way to buy and afford health insurance.”

New Flexible Savings Account Rules.  There are new rules coming for you use your FSA.  Here’s an article highlighting the changes.

LTSS Across the States.  AARP has a great publication profiling the status of long-term services and supports throughout the 50 states.

Rural Veterans.  I have attached a slide show of the face of the veteran community in rural America.  It’s a really good presentation with a great amount of useful information about America’s veterans.

Talkers and DoersIn a recent Crystal Ball by Larry Sabato, he makes the following observation about the difference between federal and state elected officials:  “The statehouses are still where the action is. Politicians run for the U.S. Senate and the U.S. House in order to talk about solving problems; as debating societies, they cannot be beat. Politicians run for governor to do something about those problems.”

98% of Americans.  President Obama has 33 million Facebook fans and collectively they are friends with 98% of Facebook users in the U.S.  Pretty amazing.  Not sure what you think but I’m beginning to believe that this new technology may have staying power!

2048 Presidential Election.   The Atlantic notes "[a]n important deadline for Election 2048 is fast approaching. Due to the mandate in the U.S. Constitution that American presidents must be at least 35 years old to take office, parents who want their children to be eligible for that election cycle should start trying to conceive now or in the immediate future, generations of accumulated data about fertility and the length of gestation suggest."Description: Description: Description: Description: Description: Description:

Comprehensive Tax Reform.  For all the lines-in-the-sand and tough talk about taxes and how the U.S. is overtaxed, some historic perspective would be helpful although rarely if ever is it offered among the chattering class.  Some of us are ‘experienced enough’ (sounds better than ‘old enough’) to recall the great tax battles of the mid-1980s when President Reagan ushered in the most dramatic drop in marginal rates since JFK cut it from 90% to 70% (yes, it was once that high).  Here is a quip from a recent newsletter from former U.S. Senator David Durenberger about what happened: 

WHAT WOULD ROSTY DO?  Back in 1985-86 President Reagan challenged the Congress to reform the nation's income tax code.  Democratic Ways and Means Committee chair Dan Rostenkowski (D-IL) who had to originate the reform bill, took the President up on the challenge, worked with Treasury Secretary Donald Regan to shape a reform product that took the marginal rates from 50% (which he had lowered from 70% in 1981), to 35%.  We on the Senate Finance Committee applauded but did Rosty one better - dropped it to 25% with no net loss in revenue.  The compromise rate was 28%.  Rostenkowski was happy to have Reagan take credit for reforming all those "tax entitlements," knowing that Reagan as President would also have to take all the heat.  And there was plenty.  Can Republicans do that in 2013?  No indication so far they can or will.

Not sure of a Headline for this.  A 56-year-old ex-convict said he intentionally got arrested for shoplifting in order to get treated for leukemia in prison, the Associated Press reports.

Holiday Travel Helpline: The U.S. Transportation Security Administration (TSA) has a helpline—TSA Cares—for travelers with disabilities and medical conditions.  When a passenger with a disability or medical condition calls TSA Cares, a representative will provide assistance, either with information about screening that is relevant to the passenger's specific disability or medical condition, or the passenger may be referred to disability experts at TSA. TSA recommends that passengers call approximately 72 hours ahead of travel so that TSA Cares has the opportunity to coordinate checkpoint support with a TSA Customer Service Manager located at the airport when necessary. More information can be found on TSA’s website.

2013 is right around the corner and the Public Policy Office wishes all of you a happy and safe holiday season!  Your support and engagement is critical to doing all we can to advance the interests of people impacted by MS. 

Wednesday, December 12, 2012


2012 Advocacy Hall of Fame inductees
At the Society’s 2012 Leadership Conference, held in November, more than 600 MS Activists, fundraisers, donors, team captains, volunteer leaders, and Society staff came together under the theme “A Shared Promise” to strengthen their commitment and make even greater progress in the coming year towards a World Free of MS.

The conference, which took place in Dallas, Texas, featured general sessions highlighting advocacy and research, as well as multiple workshop sessions—including an advocacy workshop where three advocacy hall of fame recipients shared their personal stories of activism. One evening, Society CEO/President Cyndi Zagieboylo and National Board of Directors Chairman Eli Rubenstein officially inducted an impressive bunch into the Society’s 2012 Volunteer Hall of Fame. For more on the Hall of Fame, click here. The Hall of Fame’s advocacy category recognizes MS Activists who help drive change at the local, state, or national level.

Seven MS Activists were inducted into the 2012 Advocacy Hall of Fame:

  • Patti Barker is described as a “driving force” of the MS Movement in the South Central Region. She serves as the Chair of the Oklahoma Government Relations Committee, a member of the Oklahoma Leadership Council, and on the Region’s Board of Trustees. 
  • Yvonne Brown, of the National Capital Chapter, has been an MS activist for eight years. Yvonne provided inspiring testimony at the Social Security Administration’s Compassionate Allowances Outreach Hearing on Autoimmune Diseases that helped speed disability benefits for those with advanced MS. She has also developed significant relationships with local and national government officials. 
  • Linda Buchwald, MD, from the Greater New England Chapter, is a member of the Society’s Medical Advisory Board and the chapter’s Clinical Advisory Committee. A neurologist, Dr. Buchwald is the Director of the Mt. Auburn Hospital MS Care Center and a champion of MS issues across the federal, state, and private sectors. 
  • Robin D’Andrea joined the Long Island Chapter’s Government Relations Committee over ten years ago and has co-chaired the committee for about eight years. She is a licensed Social Worker who has been living with MS for 15 years. 
  • Mike Daisley has been a dedicated volunteer for more than 32 years. Mike has helped the Greater Carolinas Chapter develop a successful advocacy network. 
  • Bonnie Danowski, from the Arizona Chapter, is the primary caregiver for her husband, Jim, who has been living with MS for over 40 years. Bonnie has been an MS Activist for 22 years, helped develop her Chapter’s Government Relations Committee, and advocates for respite funding for family caregivers at the national and state levels. 
  • Nan Luke, of the Pacific South Coast Chapter is a practicing attorney and chairs the Pacific South Coast Chapter’s Government Relations Committee. In 1997, after beginning treatment for her MS, Nan reprioritized her life to include service to the Society.
To learn more about this group of highly dedicated, passionate MS Activists, you can read their complete biographies here. Congrats, inductees! You are true role models!

These individuals were honored during the Leadership Conference, but we would like to add an additional thank you for all of their hard work as dedicated MS Activists from around the country!

Wednesday, December 5, 2012


The Medicare Open Enrollment Period for 2013 will end this Friday, December 7.  This includes Open Enrollment for Medicare Part D—Medicare’s prescription drug coverage.  If you have Medicare insurance, we urge you to compare plans and make sure that you have the best Medicare health and prescription drug plan for you.  You can stay with your current plan or look for a new plan by comparing coverage options and costs.

Information is available for all 2013 plan options here or by calling 1-800-MEDICARE (TTY 1-877-486-2048). This may be the only chance for you to make changes to your health and prescription drug coverage for 2013.  Please click here to visit the Medicare Open Enrollment website today!

There are some changes to Medicare this year, including more coverage of preventive services and more help in the prescription drug coverage gap—the “donut hole.”  The Affordable Care Act eventually closes the donut hole and as a result, the percentage you’ll pay for brand-name and generic drugs will continue to drop.  This year, you’ll pay 47.5% instead of 50% for brand-name drugs and 79% instead of 86% for generic drugs in the coverage gap. 

If you are a Medicare beneficiary who was impacted by Hurricane Sandy, the Centers for Medicare and Medicaid Services (CMS) is making accommodations to ensure that all Medicare beneficiaries can enroll in the health and drug plans that are best for them.  Those affected by Hurricane Sandy can enroll in health and prescription drug coverage for 2013 by calling 1-800-MEDICARE (1-800-633-4227) anytime, 24 hours a day, 7 days a week.  TTY users should call 1-877-486-2048.  By calling one of these numbers, beneficiaries can review their plan options, make plan selections, and complete enrollment even after December 7.  Even with this extension, CMS encourages all beneficiaries to make their enrollment choices by December 7, if possible.