FEDERAL FRIDAYS

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 21^st 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 – www.msactivist.org 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!

MY DAY ON CAPITOL HILL

Lisa Emrich

Writer, HealthCentral.com and Brass and Ivory: Life with MS and RA

Wednesday was the big day! MS activists from around the country visited countless offices on Capitol Hill to voice their support of specific legislative issues needed to improve the lives of people affected by multiple sclerosis. Requests made to lawmakers this year on behalf of people with MS nationwide included:

• Support the Lifespan Respite Care Program: 
  • reauthorize the program by passing H.R. 3266 and 
  • include $5 million in the FY2013 Labor-HHS-Education appropriations bill for the program.
• Support MS Research: 
  • provide $32 billion in FY2013 for National Institutes of Health and
  • sign Dear Colleague Letter or make programmatic request for additional appropriations (money) for the MS Research Program (MSRP) under the Congressionally Directed Medical Research Program. Last year the MSRP received $3.8 million.
• Join the Congressional MS Caucus: contact MS Caucus co-chairs Representatives Michael Burgess, MD (TX-26) and Russ Carnahan (MO-3) and Senators Robert Casey (PA) and Orrin Hatch (UT).
• Support MS Awareness Week Resolution: 
  • co-sponsor the MS Awareness Week Resolution (H. Res. 560) and
  • contact Representative Barbara Lee (CA-9) and Senator Bob Casey (PA) to voice your support.

Todd Adams, Legislative Director to U.S. Representative James R. Langevin (RI-2) and the Society’s 2011 Congressional Staffer of the Year, made the following suggestions in preparation for our visits:

• Regardless of whom you meet in the office, establish a connection. Tell them your story.
• Make it known if you are a constituent.
• Clearly present your “ask.” What do you want the congressman to do or support? Explain what it will mean down the road to you and others. Leave behind materials detailing your request.
• Be mindful of time.
• Exchange information so that the office can contact you.
• FOLLOW UP!! Possible questions to ask: “Did you have an opportunity to look over our priorities? Did you have any questions? Did your boss sign off on our request? Was he OK with it?”
• Most importantly, HAVE FUN!!

My day began as MS activists from Virginia loaded the first bus leaving the hotel. Dropped off in front of the Capitol Building, I went with Dana and Phil, fellow MS activists, to visit the office of James Moran (VA-8), our U.S. Representative. We met with Moran’s Legislative Assistant, Marcia Knutson. Tip: Allow at least one hour to enter the office buildings in the morning. 

Dana and Phil have an ongoing relationship with Ms. Knutson, and Rep. James Moran is generally supportive of healthcare issues, so not much time was spent discussing the requests. Knutson wanted to know the bill numbers and specific dollar amounts being requested, as she wrote in her notebook. From there, the conversation traveled between various topics and I picked up on a few additional details which may be important to keep in mind when contacting your own lawmaker’s office.

• Although email communication is increasingly becoming more common, take the time to visit the office. An in-person visit to educate the Legislative Assistant on an issue, especially one with which he/she is unfamiliar, is highly preferable.
• If you send a blanket form letter to 300+ offices, most of which do not house your personal representative or senator, don’t expect it to be taken as seriously.
• Don’t just ask for “more money” in your request. Be prepared with specific dollar amounts.
• Know your lawmaker’s deadlines for Budget Hearings. Rep. Moran’s deadline for submitting materials in preparation for a March 28th or 29th hearing is March 20. As the legislative assistant must prepare materials in advance of this deadline, groups meeting with Ms. Knutson with budget requests after March 13 will be left out of consideration.
• Unfortunately, if you choose to send a letter to your Senator or Representative, it will face up to a 6-week delay because of the rigorous security screening process in place – email is preferable. And if you don’t hear back from the office after an email, call to be sure they received it – Spam filters in Congress sometimes divert email messages.

Before we left Rep. Moran’s office, I was able to jump into the conversation and express my personal concerns as a self-employed person who has an individual health insurance policy. As a “grandfathered” policy, it does not need to match the same requirements incorporated into new policies being offered by the same company. Ultimately I was asked if I could hold out until 2014 when health exchanges will be established in our area. I’m not positive that my concerns were entirely understood, which means that I need to follow up and continue the conversation. 

After going through this, I realized how easy it really was. A visit to a lawmaker’s office is just the beginning of a longer conversation. What you do afterward will determine how well your voice is heard and your concerns are understood. Each phone call is documented and emails are read. Every contact is important. Now is the time to keep MS-related issues at the frontline of Capitol Hill. 

Help keep the momentum going – follow the federal advocacy efforts on twitter at @MSActivist and after you’ve contacted your elected official or take some other action, tweet about it using hashtag #MSActivist. 

Lisa Emrich, a musician living with MS and rheumatoid arthritis, is the founder and editor of the Carnival of MS Bloggers. You can connect with Lisa via her blogs and on Twitter.

Increase Funding for MS Research: An Interview with Sarah Keitt

Lisa Emrich

Writer, HealthCentral.com and Brass and Ivory: Life with MS and RA

Sending a clear message to Congress, MS activists will request “robust funding for MS research” and at least $32B funding for the National Institutes of Health (NIH). You may be familiar with NIH, but do you know about the Congressionally Directed Medical Research Program (CDMRP) funded by the Department of Defense (DoD)?

Diagnosed with MS in 2000, Sarah Keitt volunteers with the National MS Society and serves as a consumer reviewer for the Multiple Sclerosis ResearchProgram (MSRP) which is part of the CDMRP. I spoke with Sarah about her role as a peer reviewer for the MSRP, a program that has received $20 million since 2008 to fund grants for cutting edge, “high risk” research.

How did you become a peer reviewer for the CDMRP?

“I have been involved with the MS society since 2000 when I was first diagnosed. I’ve volunteered in one way or another. I have a background in public health and worked on clinical research issues [in my career], so I have a strong familiarity with study design, clinical research, and bioethics. Then an opportunity came up that fit my professional interests along with my personal interest in MS.” 

Sarah was first appointed to the CDMRP in 2008 as a peer reviewer for the Clinical Research Program. In 2009, Sarah was invited to join the Stakeholders’ Committee and serve as a consumer reviewer on the Integration Panel for the newly established Multiple Sclerosis Research Program (MSRP). She “jumped at the chance.”

Please explain the research proposal and peer review process?

“At the beginning of the funding cycle – once Congress says, ‘here’s the money you are going to get this year’ – members of the Integration Panel sit down and have what we call a Vision Setting meeting. We decide: What are the research gaps? What types of studies do we want to fund?

From there, the Department of Defense (DoD) develops a Call for Proposals which goes out to researchers around the world [who in turn] submit study proposals back to the DoD. Depending upon the funding mechanisms – as there are different types of grants – those pre-proposals might come back to the Integration Panel for a pre-screening. We might get a couple of pages describing what they WANT to do.

We pick the best of the best to submit a full proposal. Those investigators develop a whole proposal, which is 20-30 pages long, and which gets sent to Peer Review, another panel consisting of MS researchers and consumer advocates. They read through the whole proposal and judge it based on study design, feasibility, what kind of impact it’s going to have on MS and innovation. Then the highest-scoring ones come back to the Integration Panel. 

We take all the proposals and see how they fit into a balanced research portfolio and how they fulfill the vision we set up at the beginning of the process. We narrow it down and select the finalists. When we do that, it goes back to the Department of Defense for final approval and negotiations on the contracts. Then the grants are awarded.”

Are consumers involved throughout the process and how long does that take?

“Consumers are there from the very beginning when we decide what kind of studies we want to fund. They’re there to review the studies when they come in to see which are the best. And we’re there to make the final recommendations as to what should be funded. It takes about a year.”

CDMRP ensures research they fund does not duplicate that being funded by NIH or the National MS Society. “We fund stuff nobody else really will fund because it is considered ‘high risk’ and there is often not a lot of preliminary data,” says Sarah. “So we might take the kernel of an idea that somebody has and fund it so they can get the preliminary data and they can do the feasibility studies, to then go on to a larger scale study” perhaps receiving NIH grants.

Results from the first round of research funding from 2008 are just beginning to come in. Complete studies will be published in peer review journals and MSRP will maintain a research clearing house. View the MSRP Program Booklet to see Grant recipients from 2009.

Sarah, do you have any final thoughts?

“If you don’t get involved with advocacy, no one else is going to do it for you. It’s up to us, as people with MS, to make sure that the funding for research is there, that services for people with MS and other disabilities are there. It’s really critical that we get involved in any way that we can!”

Policy Update:

MS Activists on the Frontline are asking lawmakers for $32B funding for the National Institutes of Health (NIH) and $10 million for MS research as part of the CDMRP. NIH has invested more money in MS research than any other agency in the United States, including many large-scale MS projects and clinical trials. Approximately $122 million of FY2011 NIH-appropriated funding was directed to MS-related research.

The National MS Society has spent $761 million in research since 1947, contributing to many of the FDA approved therapies. In 2011 alone, the Society invested $40 million in 325 new or ongoing research projects. However, “we need the National Institutes of Health (NIH) and the Congressionally Directed Medical Research Program (CDMRP) to help fill the gaps,” says Dr. Timothy Coetzee, Society Chief Research Officer.

Coetzee emphasizes that NIH spending is flat and CDMRP spending is down. “The uncertainty of funding streams is causing experienced researchers to leave the field and is making it harder to attract and retain the most promising researchers and doctors to MS.” But we still have so much more work to do, especially in the fields of progressive MS, myelin repair, symptom management and rehabilitation to improve quality of life, and the cause and prevention of multiple sclerosis.

Follow the National MS Society federal policy efforts on Twitter at @MSActivists

Lisa Emrich, a musician living with MS and rheumatoid arthritis, is the founder and editor of the Carnival of MS Bloggers. You can connect with Lisa via her blogs and on Twitter.

From the Sea to Capitol Hill - An Interview with MS Activist Donnie Horner

Lisa Emrich

Writer, HealthCentral.com and Brass and Ivory: Life with MS and RA

At 26, Donald “Donnie” Horner, a 2008 graduate of the United States Naval Academy, had trouble shaking off his “sea legs.” Donnie was a naval officer commissioned as Surface Warfare Officer (aka SWO) aboard the USS Bonhomme Richard, a ship stationed out of San Diego, California. As Donnie describes it, he went to school to learn to be the “boat driver.” Donnie majored in political science, earning the Dr. Charles H. Coates Award for Excellence in Military Sociology in 2008.

Donnie has a record of being a standout. He played not one, but two sports, hockey and baseball, while at the Academy. A 4-year-letter winner and president of the Navy Hockey Team, Donnie led the team in 4-straight winning seasons. He was awarded the 2008 US Naval Academy Athletic Association Male Club Sport Athlete of the Year Award.

In his first two years stationed in San Diego, Donnie spent about 300 days at sea. His job required him to spend many hours on his feet. “When I was out to sea, I began to develop tingling in my legs in July and August 2009. Because I had spent so much time out to sea, I said to myself, ‘Man, this just must be sea legs or something like that.’ When we got back into port, I noticed my symptoms started to get worse. I went to a couple of my buddies and they said, ‘You really need to go see a doctor.’ So I did.”

Donnie described his legs as feeling weak and heavy, with the sensation of falling asleep. He would try to hit his legs in an attempt to wake them up. “My mind was going, but my legs weren’t able. And it hurt, the constant pressure of standing on the needles.”  Coincidentally, Donnie had never experienced these symptoms until after he received required vaccinations – anthrax, tuberculosis, tetanus – in May/June 2009. “I’m not kidding. I received a dozen vaccinations the summer I was diagnosed.”

Donnie was transferred from San Diego to the Naval Air Station Hospital in Jacksonville, Florida, for immediate evaluation and treatment. He received the official MS diagnosis on September 11, 2009, a determination which was confirmed by a second opinion at the Mayo Clinic. Life for the 26-year-old Donnie was ‘pretty darn challenging’ at that time.

“You go from being very confident and thinking that you have a great career in front of you to ‘damn, I don’t know what I’m going to do.’ And really I didn’t. All I was focused on was taking my Avonex once a week, getting the cortisone or steroid concoction they would give me, and trying to stop using the cane. And I did that for 8 months.”

In April 2010, Donnie retired with a partial disability and now receives a monthly stipend from the Department of Defense for which he is eternally grateful.

“[After retirement] I kicked around a couple of months before I started graduate school. I graduated with my MBA from Jacksonville University in August 2011 and worked as a special assistant for Mayor Alvin Brown. I was his public communications officer. Then I left the Mayor’s office [in November 2011] to start my company, MainOcean Port Services in Jacksonville, [a consolidated port services company serving vessel agents, owners, and operators in the ports of northeast Florida and Southeast Georgia].” 

Donnie receives primary medical care from the Veterans Administration (VA) with access to neurologists at the Mayo Clinic in Jacksonville. “I’m lucky that I was a veteran.“ Donnie raves about the quality of care he receives from the VA and is thankful that he doesn’t have to worry about obtaining health insurance with a pre-existing condition. He is proud that MainOcean Port Services provides health insurance to its other full-time employees. 

“I’m very well aware of the fact that I’m one of the lucky ones. There are a lot of people who have this horrible disease, and they don’t have access to [insurance] which is why I’m so passionate about the National MS society. [The Society] opens a lot of doors, especially when you are beating down congressmen’s doors in DC while at the Public Policy Conference. It makes a difference.”

On Wednesday, hundreds of meetings are scheduled with elected officials throughout the day as MS activists take their message directly to Capitol Hill. A first-time speaker and second-time attendee at the Public Policy Conference, Donnie is excited to share his story at the Kick-Off Breakfast before he visits Florida legislators.

Policy Update:

The Affordable Care Act calls for the creation of state “health exchanges” - basically a new marketplace to help link Americans to insurance coverage. Individuals and small businesses will be able to purchase health insurance plans offered on an exchange.  Dave Chandra, Senior Policy Analyst at the Center on Budget and Policy Priorities, explains that health exchanges are especially important for persons who earn above 133% Federal Poverty Level (earning too much to qualify for Medicaid) and who are still uninsured.  Persons earning below 400% FPL may be eligible to receive subsidies, based on a sliding scale, to help pay insurance premiums.

States are responsible for establishing health exchanges and may work together to create regional exchanges, however, “No state is jumping at this option,” says Chandra. The federal government has turned over the responsibility of establishing essential health benefits to the states. Health insurance plans that wish to compete within an exchange must include these essential benefits as baseline coverage. Plans may offer greater benefits but not lesser. To help determine what the essential benefits may include, each state may look to the top existing plans (based on enrollment) currently available in their state as models for future plans.

Important features of health exchanges to keep in mind:

• You will be able to keep your doctor.

• Insurance plans will not be able to deny coverage to people because of pre-existing or chronic conditions.

• All insurance plans must have basic benefits that will cover things like doctor visits, hospitalizations, preventive care, and prescriptions.

Most importantly, health exchanges will help people living with MS, or other chronic condition, obtain health insurance.

Follow the National MS Society federal public policy efforts on Twitter @MSActivist.


Lisa Emrich, a musician living with MS and rheumatoid arthritis, is the founder and editor of the Carnival of MS Bloggers. You can connect with Lisa via her blogs and on Twitter.

Lisa Emrich

Writer, HealthCentral.com and Brass and Ivory: Life with MS and RA

Welcome back to the 2012 Public Policy Conference. After breakout sessions this morning, the Society presented awards to three outstanding elected officials whose work benefits people with MS. Then MS activists gathered to learn more about one of this year’s public policy priorities, the Lifespan Respite Care Program. During lunch, University of Virginia professor Larry J. Sabato, Ph.D., who has an uncanny knack for predicting election outcomes, shared his political insights on this Super Tuesday. “No matter who’s elected, there will be less government,” says Dr. Sabato.

National Multiple Sclerosis Society Elected Officials Awards (2011)

Each year, the National MS Society recognizes the elected officials who work to improve the lives of people affected by multiple sclerosis and continue to support the Society and its policy priorities. For their tireless work throughout 2011, Representative Barbara Lee (CA-9) is honored as Representative of the Year, Senator Mike Johanns (NE) is honored as Senator of the Year, and Governor Mark Dayton (MN) is honored as Governor of the Year.

Representative Barbara Lee (CA-9), an instrumental member of the U.S. House of Representatives Multiple Sclerosis Caucus (MS Caucus), authored the first-ever annual Congressional Resolution honoring MS Awareness Week. She supported specific healthcare reform principles, necessary to address health disparities, that were included in the Patient Protection and Affordable Care Act. Representative Lee authored the Adult Day Achievement Center Enhancement Act (H.R. 883) and has been a vocal supporter of increased MS research at the National Institutes of Health (NIH) and through the Congressionally Directed Medical Research Program (CDMRP). Having a personal connection to MS, Representative Lee spoke on the Congressional floor to raise awareness of the issues facing African Americans living with MS. Ask your Member of Congress to contact Representative Lee to voice your support for her resolution honoring MS Awareness Week (March 12-18, 2012).

Senator Mike Johanns (NE), a strong ally and supporter of advancing MS research, co-led a Dear Colleague letter with Senator Whitehouse (RI) calling for continued funding for MS research in the Congressionally Directed Medical Research Programs (CDMRP) in FY 2012. Due to his support, along with others, $3.8 million for MS research was provided for in the CDMRP last year. Senator Johanns co-sponsored the National MS and Parkinson’s Disease Registry Act, now titled the National Neurological Diseases Surveillance System Act (S. 425), which will establish a national system to track and collect data on the epidemiology, incidence, prevalence and other factors of neurological diseases, including MS. Senator Johanns has been in public service for 28 years, having served as Nebraska’s 38th governor from 1999 to 2005. As he spoke to the MS Activists he told of his mother’s struggle with Parkinson’s disease and his former sister-in-law’s life with MS.

Governor Mark Dayton became Minnesota’s 40th Governor in January 2011 after serving as U.S. Senator. He has consistently maintained access to affordable, quality health care as a top public policy priority. Upon taking office, Governor Dayton fast-tracked Minnesota’s early opt-in for Medicaid expansion as part of the Patient Protection and Affordable Care Act (PPACA) helping to expand access to care and healthcare coverage to roughly 95,000 Minnesotans. He has also authorized work on a state health insurance exchange as prescribed in the PPACA. Governor Dayton has fought proposed legislation that could have resulted in the virtual shutdown of critical medical research at the University of Minnesota and the Mayo Clinic. Governor Dayton has been in public service for 34 years and currently serves on the Executive Committee of the National Governor’s Association.

The Lifespan Respite Care Program (LRCP)

Family members often become caregivers to loved ones living with chronic and progressive conditions. According to the National MS Society, up to 25% of people living with MS will require long-term care services. According to a 2011 AARP report, 61.6 million family caregivers provided care at some point during 2009 and the value of their uncompensated services was approximately $450B a year. Respite care, a frequently requested support service, provides short-term professional help widely needed to give caregivers the relief necessary to maintain their own health and promote family stability.

According to a 2011 National Alliance for Caregiving (NAC) survey, family caregivers spend 24 hours per week on average providing care to people living with MS. Additional survey results reveal that 64% of caregivers were emotionally drained, 32% suffered from depression, 25% could not focus at work and 22% have lost a job due to caregiving responsibilities. Sixty-six percent of respondents said respite care would allow their care recipient (often a loved one) to live at home longer.

The Lifespan Respite Care Program (LRCP) is intended to expand and enhance services for family caregivers in statewide respite programs, improve coordination of services between available programs, improve access to caregivers by streamlining the delivery of planned and emergency respite services and improve the overall quality of respite services currently available. Thirty states have received grants and implemented LRCP programs which serve families regardless of special need or patient age. Currently more than half of care recipients (56%) are under age 75, and almost one-third (28%) are under age 50. The need for respite care does not discriminate by patient age.

LRCP has been severely underfunded. It was authorized by Congress in 2006 to receive $290 million over five years, but the Program has only received $2.5 million in each of the past three years. MS Activists and the National MS Society will urge Congress to provide $5 million for the Program in the Fiscal Year 2013 Labor-HHS-Education appropriations bill and to reauthorize the program by passing H.R. 3266.

Kim Campbell, MS activist from Texas, gave moving testimony to the need for respite care, her story garnering the first standing-ovation of the conference. Kim has lived with progressive relapsing MS for over twenty years. She and her husband Gary have used their voices to testify before both the Texas House and Senate in support of family caregivers through respite care. In February 2011, Kim provided testimony during a Senate budget hearing in support of Home and Community Based services, highlighting the important role family caregivers have in allowing persons with a chronic illness to remain in their home.

More to Come:

This afternoon we will learn more about the 2nd policy issue being brought to Capitol Hill: Increased Funding for MS Research. Todd Adams, Legislative Assistant to U.S. Representative James R. Langevin (RI-2), will be honored as 2011 Congressional Staff Person of the Year. He will also help us prepare for our important visits on the Hill tomorrow. Then, this evening, I’m looking forward to kicking back and enjoying the comedy of Brett Leake, a standup comic turned sit-down comic who lives with muscular dystrophy.

Continue your involvement in activism by following the public policy office on Twitter at @MSActivist.

Lisa Emrich, a musician living with MS and rheumatoid arthritis, is the founder and editor of the Carnival of MS Bloggers. You can connect with Lisa via her blogs and on Twitter.