ADA Settlement with QuickTrip Corporation

The U.S. Department of Justice filed a lawsuit against QuikTrip Corporation, owner and operator of QuikTrip gas stations, convenience stores, truck stops and travel centers, in the U.S. District Court for the District of Nebraska on July 15, 2010, alleging that its facilities are not accessible to persons living with disabilities. A Consent Decree was approved by the Court on July 19, 2010 that establishes a $1.5 million fund to compensate any individual who experienced discrimination in violation of Title III of the Americans with Disabilities Act at QuikTrip owned locations. Claims must be filed by January 15, 2011. To learn how to file a claim, click here.

Society's Joyce Nelson Thanks Senator Byron Dorgan

(left to right): Shawn O'Neail, Vice President of Federal Government Relations; Senator Byron Dorgan (ND);
Joyce Nelson, President & CEO; David Chatel, Executive Vice President of Advocacy

During her visit to Washington, D.C. last week, President & CEO of the National MS Society Joyce Nelson visited Capitol Hill to thank Senator Byron Dorgan (ND) for his lengthy service in the United States Congress and for his bold activism as Senate Co-Chair of the Congressional MS Caucus. Retiring this year, Senator Dorgan served six terms in the U.S. House of Representatives and was elected to the U.S. Senate in 1992. Under his leadership and in close collaboration with Co-Chair Orrin Hatch (UT), the MS Caucus has grown to an impressive 23 members. True to the Caucus's mission, Senator Dorgan has helped raise awareness about MS, actively engages in discussions about access to quality health care, and seeks and pursues creative solutions to the challenges facing people living with MS and their families.

One of his most notable achievements, Senator Dorgan introduced and has helped shepherd through the Senate the National MS and Parkinson's Disease Registries Act (S. 1273). Currently, a national coordinated system to collect and analyze data on MS and other neurological conditions does not exist. Broadened in the House to the National Neurological Disease Surveillance System Act (H.R. 1362), this legislation could help uncover and inform promising areas of research, such as genetic and environmental risk factors and support the discovery of disease therapies, treatments, and one day--a cure. The National MS Society applauds Senator Dorgan for his long-time commitment, as he has undoubtedly helped move us closer to a world free of MS.

Senator Robert P. Casey, Jr. (PA) will serve as MS Caucus Co-Chair, alongside Senator Orrin Hatch, in the 112th Congress.

Society Participates in AoA Caregiving Celebration

On November 17th, the Society joined the U.S. Administration on Aging to celebrate the 10th anniversary of the National Family Caregiver Support Program (NFCSP) and to launch 2011 as the Year of the Family Caregiver. Secretary of the U.S. Department of Health and Human Services (HHS) Kathleen Sebelius attended the event to highlight the growing importance of caregivers in the upcoming years and ways in which current HHS programs such as NFCSP and the Lifespan Respite Care Program support family caregivers.  The NFCSP provides grants to states to fund a range of supports that assist family and informal caregivers to care for their loved ones at home for as long as possible. Former Assistant Secretary for Aging Jeanette Takamura under whose leadership NFCSP was established in 2000 attended to discuss the evolution of the successful program and to share her family's personal experiences with caregiving.

HHS Secretary Kathleen Sebelius

A 2010 priority for the Society, the Lifespan Respite Care program provides competitive grants to states to establish or enhance statewide lifespan respite programs, improve coordination, and improve respite access and quality. Lifespan Respite is a particularly valuable program to those living with MS and to their family caregivers because while many other respite programs target the aging population, Lifespan Respite serves regardless of age or disability. While the program has been underfunded since its inception, twenty-four states have received funding to begin building infrastructure. Funding levels for Fiscal Year 2011 are still being determined.

Several national organizations including the National Alliance for Caregiving, the National Family Caregivers Association, the Family Caregiver Alliance, Generations United, and the National MS Society partnered with AoA and at the event, shared various perspectives on caregiving and caregiving policy. National MS Society Associate Vice President of Programs, Services and Clinical Activities Debra Frankel spoke on a panel and discussed the unique issues that people living with MS and their caregivers face.

National MS Society's Debra Frankel Discusses the Unique Experiences of People Living with MS

Current Assistant Secretary for Aging Kathy Greenlee closed the event by recalling several of the dedicated, compassionate family caregivers she has been fortunate to meet over the years and reaffirming AoA's commitment to these vital programs and to 2011 as the Year of the Family Caregiver.

Assistant Secretary for Aging Kathy Greenlee with National MS Society President & CEO Joyce Nelson

Congress Returns Next Week. Tell Your Senators About the Importance of S. 1273!

Congress will be back in session the week of November 15 and we need you to email your Senator to ensure S.1273 is passed before the 111th Congress adjourns. This legislation would establish multiple sclerosis (MS) and Parkinson's Disease surveillance systems at the Centers for Disease Control and Prevention. Such a surveillance system would gather all existing data in one location and offer a foundation for evaluating many MS factors such as, geographic clusters of MS diagnoses, variances in the gender ratio, disease burden, and changes in health care practices. As a result, this system could help uncover and inform promising areas of MS research such as: genetic and environmental risk factors, and support the discovery of disease therapies, treatments, and one day-a cure.

The House of Representatives passed the companion bill, H.R. 1362, the National Neurological Diseases Surveillance System Act, just before leaving for recess and Senate passage is the last significant procedural hurdle. Click here to email your Senators today about the importance of passing S. 1273 this Congressional session.

Fast Forward Represents the Society at Capitol Hill Hearing

Dr. Timothy Coetzee, President of Fast Forward LLC, testified at a U.S. House of Representatives hearing this week entitled, “From Molecules to Minds: The Future of Neuroscience Research and Development.” Fast Forward, founded by the National MS Society, focuses on expediting the drug development process, bridging the gap between promising discoveries and the commercial expertise and funding to move them forward. The hearing held by the Oversight and Government Reform Subcommittee on Domestic Policy addressed the current state of neuroscience research, including efforts to expand knowledge and treatments to help individuals afflicted with neurologic and mental health disorders, including veterans and military personnel. It also assessed collaborations between and among relevant entities, including federal government agencies, private foundations, industry, and academia.

In his testimony, Dr. Coetzee discussed the challenges to MS drug discovery and the need for even better and more cost-effective therapies. Among his recommendations, Dr. Coetzee stressed the need for: a large and vibrant medical research community in the United States; an environment conducive to formation of fluid networks of scientists engaged in translational research; and close collaboration between government, private foundations, and patient advocates so that influence and financial resources are maximized to connect innovators across sectors. To read Dr. Coetzee's full testimony, click here.

House Passes Bill For More Robust MS Data

Due to MS activists' countless emails, phone calls, and discussions, the House of Representatives passed the National Neurological Diseases Surveillance System Act (H.R. 1362) late last night. This bill is one significant step closer to becoming law. For the past two years, we have been working hard along with our partners in the Parkinson’s community to make this a reality. Thank you!

This legislation will establish a national data surveillance system that will track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including multiple sclerosis (MS) and Parkinson’s. Currently, such a national coordinated system does not exist to collect data on MS. The development of a surveillance system will address this gap by gathering all existing data on the incidence and prevalence of MS in one location. As a result, this system could help uncover and inform promising areas of MS research such as: genetic and environmental risk factors, and support the discovery of disease therapies, treatments, and one day—a cure.

Last night’s passage in the House was historic, but we are not quite done yet. To make this data system a reality, the Senate must take action on S. 1273. Stay tuned, as we will need you to continue your advocacy and urge your Senators to support passage of S. 1273 this Congress.

Take Action to Advance the MS Registry Bill

Congress has heard your requests and the House of Representatives will be considering H.R. 1362, the National Neurological Diseases Surveillance System Act, tomorrow on the House floor! Just last week, the House Energy & Commerce Committee met to mark-up H.R. 1362. During this meeting, the National MS and Parkinson’s Disease Registries Act was expanded to make the surveillance system available to all neurological conditions, maintaining MS and Parkinson’s as a priority. The Committee unanimously passed H.R. 1362.

This legislation will establish a national data surveillance system that will track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including multiple sclerosis and Parkinson’s. Currently, such a national coordinated system does not exist to collect data on MS. This system could help uncover and inform promising areas of MS research such as: genetic and environmental risk factors, and support the discovery of disease therapies, treatments, and one day—a cure.

Victory in the House will bring us further than we have ever been before, so please continue to voice your support! Click here to email your U.S. Representative today!

Adult Day Achievement Center Enhancement Act Introduced

On September 23, Congresswoman Barbara Lee (CA-9) introduced the Adult Day Achievement Center Enhancement Act (H.R. 6208). The legislation would create a new grant program within the Administration on Aging that is specifically designed to support Adult Day programs targeting a younger population of people, such as those living with multiple sclerosis and similar diseases.

MS Adult Day Programs (MSADP) provide an important response to the needs of people with severe MS and their caregivers. For persons living with MS, MSADPs offer medical care, rehabilitation therapies, assistance with activities of daily living, nutrition therapy, health monitoring, social interaction, and stimulating activities that are appropriate for a younger disabled population. These can help to ameliorate MS symptoms, reduce dependency, provide important socialization opportunities and maintain quality of life. Additionally, MSADPs provide caregivers of people living with MS an opportunity to seek employment, run errands or simply offer some respite during the day.

There are less than a dozen MSADPs in the United States at present; thus, the vast majority of the MS population is denied access to these enormously beneficial programs. The National MS Society thanks Congresswoman Lee for her leadership on this issue, as H.R. 6208 will increase access and help people living with MS and their families to live even more productive and fulfilling lives.

MS Activists Attend White House Event Celebrating the 20th Anniversary of the Americans with Disabilities Act

MS Activists Attending the White House ADA 20th Anniversary Celebration (left to right): Bill MacNally of Minnesota, Patrick Vanderpool of New York, Channing Barker of Oklahoma, and Jackie Jackson of New Jersey

(left to right) MS activists Channing Barker of Oklahoma, Patrick Vanderpool of New York, Shawn O'Neail, Jackie Jackson of New Jersey, Bill MacNally of Minnesota, and Shahieda DaSilva of New Jersey

On July 26, five MS activists from around the country were invited to the White House to celebrate the 20th anniversary of the Americans with Disabilities Act (ADA) being signed into law. The ADA established a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities, guaranteeing equal opportunity for individuals living with disabilities in public accommodations, employment, transportation, state and local government services, and telecommunications.

The invited MS activists were able to hear President Obama in his remarks give due credit to the grassroots origin of the historic law, stating that “It began when Americans no longer saw their own disabilities as a barrier to their success, and set out to tear down the physical and social barriers that were.” Click here to view the full video or read the transcripts of the ceremony.

President Obama also shared his personal experience and the strength of First Lady Michelle Obama’s father, who was diagnosed with MS yet never missed a day of work and kept moving forward (viewable at approximately minute 33 of the full video). Ongoing efforts to ensure that the ADA realizes its full potential were also highlighted. These efforts include newly issued regulations from the Department of Justice protecting disability-based discrimination and requiring all new buildings to be compliant with 2010 accessibility standards; upcoming rules that will promote the accessibility of websites; and the launch of the Year of Community Living initiative to uphold the principles of the Olmstead court decision and community-based care.

The celebration ceremony concluded with President Obama signing an Executive Order that establishes the federal government as a model employer of individuals living with disabilities—with the goals of better recruitment, training, and retention.

President Obama at the ADA 20th Anniversary Celebration

MS activists Channing Barker and Patrick Vanderpool with Senator Tom Harkin (IA)

Society Works with Reps. Kilroy and Thornberry to Introduce Legislation to Cover Off-Label Prescriptions for Medicare Part D Carriers

On Wednesday, July 14, Representatives Mary Jo Kilroy (OH-15) and William Thornberry (TX-13) introduced legislation that would allow Medicare Part D carriers to cover off-label drugs prescribed to people living with chronic disease, including MS, when its use is supported by peer-reviewed medical literature. The National MS Society worked closely with Reps. Kilroy and Thornberry and noted clinicians and other health organizations to draft, name, and introduce the new bill--the Part D Off-label Prescription Parity Act (H.R. 5732).

The Center for Medicare and Medicaid Services (CMS) Part D regulations currently prohibit coverage for off-label indications of non-cancer drugs other than those uses listed in designated pharmaceutical compendia included in the statute. Doctors, based on existing medical literature and their professional judgment, however, routinely prescribe medications for off-label uses, meaning the drugs are used for purposes other than those originally approved by the Food and Drug Administration (FDA). H.R. 5732 would work to correct this inequity and help people living with MS and other conditions access medically necessary and effective treatment that could vastly improve their quality of life.

To learn more about H.R. 5732, click here.

Americans with Disabilities Act 20th Anniversary Approaching

This July 26th will mark the 20th anniversary of President George H. Bush signing the Americans with Disabilities Act (ADA) into law. This landmark legislation established a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities. Approaching the 20th anniversary of the ADA, the National MS Society celebrates the opportunities that the law has created and the rights that is has affirmed, while also continuing to work towards full implementation and advancement of other critical policies and legislation. The National MS Society will be participating in a collaborative ADA anniversary celebration in Washington, D.C.—“Spirit of the ADA…Lead On!” To learn more about ADA anniversary events happening in your area, click here. Further ways for MS activists to engage including instructions on how to issue a “Proclamation of Recommitment” may be found here.

Learn More About HealthCare.gov

Very recently, the Administration launched HealthCare.gov, a new online tool to connect consumers with information and resources to help them access quality, affordable coverage. HealthCare.gov makes comparison shopping easier with a new insurance finder that allows users to answer a few basic questions and receive information about insurance options that could work for them.

To learn more about this valuable new resource, join a conference call today, Tuesday, July 6th at 4:30 p.m. ET with senior Administration officials. To join the call, call (866) 793-1301 and ask for the “Health Care Website Call.” Captioning is available by clicking on this link prior to the call.

Support NIH Research and Progress

As the federal budget and appropriations process continues, it is vital for MS activists to advocate for robust funding for the National Institutes of Health (NIH). As the country's premier institution for medical research and the single largest source of biomedical research funding in the world, the NIH's work is tremendously important to people living with MS.

Click here to take action today and urge your U.S. Senators and Representative to support $35 billion for the NIH in Fiscal Year 2011.

Over the past decade, NIH's research has contributed to enhanced knowledge about the mechanics of the immune system, which in turn has led to a better understanding of MS lesions. These NIH discoveries are being used to gain more information about the potential causes of MS and different methods to alter the immune system response to treat MS. Dedicating $35 billion for the NIH in Fiscal Year 2011 would build upon this progress by permitting the NIH to pursue promising scientific and health advances for diseases and chronic conditions including MS.

State Success: Revising NH State Building Codes to Promote Equal Access

In recent decades many "doors" previously closed to people with disabilities have been opened, allowing fuller participation in all aspects of community life.

The 20th anniversary of the Americans with Disabilities Act this year, however, serves as a reminder that barriers remain, such as public doors that are challenging if not impossible to open independently.

The ADA stops short in requiring push button doors at accessible public entrances. This is not equal access. This short fall does not preclude states or municipalities from imposing such a requirement. All public buildings are subject to federal, state or local building codes. Most states choose to adopt the latest International Building Code (IBC) as their own state building code with added amendments. The latest IBC version (IBC 2009) does not require push button door openers at accessible entrances. Improved access for customers with disabilities is good business and federal tax credits and deductions enable businesses to offset the cost of making such adaptations.

The New Hampshire Government Relations Committee sought to amend the NH building code during the review of the IBC 2009 code by requiring push button door openers at accessible public building entrances 1) in new construction 2) during renovations which trigger the state building code. Amendment 82 was drafted and approved for consideration in September 2009 with technical assistance from a member of the NH Code Review Board.

Opening New Doors: A Push to Victory!
In November 2009 the NH Code Review Board officially adopted Amendment 82 into the state building code by a vote 14 to 2!

• Amendment 82 language in bold: Chapter 11 1105.1 in the IBC 2009 1105.1 Public entrances. In addition to accessible entrances required by Sections 1105.1.1 through 1105.1.6, at least 60 percent of all public entrances shall be accessible. At least one door at accessible public entrances in Use Groups* A, B, E, I, M and R shall be full powered automatic doors in compliance with ANSI A117.1.

• Exceptions:
1. An accessible entrance is not required to areas not required to be accessible.
2. Loading and service entrances that are not the only entrance to a tenant space.

* Use Groups refer to categories of public buildings. Type A (recreational) Type B (Business) Type E (Educational) Type I (Institutional) Type M (Mercantile) Type R (residential)

The IBC 2009 with adopted state amendments takes effect in New Hampshire April 1, 2010. The final code requires approval of the legislature with an up or down approval or rejection. Because this new building requirement is not in the IBC code it will be considered again in three years when the NH Code Review Board reviews IBC 2012. The GRC and its community allies will be prepared to defend or repeat this amendment process if necessary, confident this victory sets a precedent. The Society’s Federal Activist Council has voted to pursue adding the door opener requirement to the IBC as a top priority in the next few years. If successful, this requirement will reduce the need for states to replicate this effort, while providing greater uniformity for all citizens.

Key strategies that resulted in success were as follows:
• Recognizing one MS activist’s determination and success can spur policy change
• Identifying the accessibility barrier as requiring a regulatory change
• Engaging the GRC to prioritize and advance the issue
• Getting up to code: understanding federal and state building codes, how they are created and intersect
• Timing is everything! Understanding the state process, time frame and key players
• Determining the most effective strategy: regulatory vs. legislative, state code vs. municipal ordinance
• Seeking expertise and champions of the cause: a state representative with MS and a NH Code Review Board member with a MS connection!
• Building alliances: disability activists, military veterans, the business community
• Countering opposition is key! Research, compelling testimony, photographic evidence, cost analysis and making the dual case as a policy and civil rights issue

MS 101 Briefing Raises Awareness and Educates Capitol Hill

On Monday, June 14th, the National MS Society's Public Policy Office hosted a briefing on Capitol Hill entitled "MS 101." The briefing is part of an ongoing effort to educate federal lawmakers and Congressional staff about multiple sclerosis, its impact on the more than 400,000 Americans living with MS, and key policy initiatives that could improve the lives of people living with MS.

Sponsored by Co-Chairs of the Congressional MS Caucus in the House Congressmen Russ Carnahan (MO-3) and Michael Burgess, M.D. (TX-26), the briefing was kicked off by Congressman Burgess who shared with the audience his personal experiences as a physician, his interactions with patients living with MS and the importance of meeting their unmet needs. Dr. Tim Coetzee, Executive Director of Fast Forward, provided an overview of MS including symptoms, prevalence, potential causes, effective treatments, and drug innovation.

Rob Engel, an engaged volunteer with the National Capital Chapter, then offered a vital perspective as a person living with MS. Mr. Engel concluded by detailing important steps Congress can take including providing $15 million for MS research in the Congressionally Directed Medical Research Programs (CDMRP), providing full funding for the Lifepan Respite Care program, and cosponsoring the National MS and Parkinson's Disease Registries Act (H.R. 1362/S. 1273).

The briefing was attended by over 30 Congressional offices and served as an important awareness-building and educational forum.

State Success: Securing Preventive Physical Therapy Coverage in Illinois

Currently, no treatment exists to reverse the damage multiple sclerosis causes upon the central nervous system. Medications may slow disease progression, but nothing exists to eradicate it. Physical therapy has been clinically proven to help individuals with MS maintain current mobility and muscular strength.

Many insurers generally only pay for physical therapy for restorative purposes, recovery from surgery, fractures, etc. Once a patient reaches a plateau, i.e. improvement ceases, those insurers decline coverage for the physical therapy.


Status
Two Illinois Public Acts - 94-1076 created in 2006 and 96-0139 created on August 7, 2009 - mandate insurance coverage for preventative physical therapy for Illinois citizens with multiple sclerosis, for specific health plans that include:

• Fully-insured health plans, and
• State, county, and municipally sponsored self-insured health plans.

Excluded from this state regulation are other self-insured health plans, regulated by the Employee Retirement Income Security Act (ERISA).

Public Act 94-1076 legislates that a group or individual policy of accident and health insurance or managed care plan amended, delivered, issued or renewed after the effective date of this amendatory Act of the 94th General Assembly must provide coverage for medically necessary preventative physical therapy for insureds diagnosed with multiple sclerosis.

For purposes of this Section, “preventative physical therapy” means physical therapy that is prescribed by a physician licensed to practice medicine in all of its branches for the purpose of treating parts of the body affected by multiple sclerosis, but only where the physical therapy includes reasonably defined goals, including, but not limited to, sustaining the level of function the person has achieved, with periodic evaluation of the efficacy of the physical therapy against those goals.

Public Act 96-0139 amends the State Employees Group Insurance Act of 1971, the Counties Code, the Illinois Municipal Code, and the School Code to require coverage for medically necessary preventative physical therapy for insureds diagnosed with multiple sclerosis.


Background
Key strategies and tactics pursued included:

• Soliciting the House Speaker’s participation and support to assure accuracy, momentum and bipartisan support for both pieces of legislation.
• Seeking a sponsor within the State Senate, diagnosed with MS, and a co-sponsor in the State Assembly for each piece of legislation.
• Identifying a bill sponsor in the Senate from the majority party to enhance the movement of the bills and to ensure bi-partisan support.
• Recruiting grassroots activists to attend the Illinois Public Policy Network MS Action Day and seek additional authors.
• Leveraging the MS Activist Network to reach Illinois State Legislators and engaging grassroots activists.

MS Activist Featured on CDMRP Website

MS activist Fiona Hoey is featured on the Congressionally Directed Medical Research Programs (CDMRP) website for her notable advocacy and active participation as a consumer reviewer for both the Peer Reviewed Medical Research Program and the Multiple Sclerosis Research Program (MSRP). As a result of a bold grassroots campaign led by MS activists just a couple of years ago, Congress has provided nearly $10 million for research funding to study the potential link between combat service and developing MS. Fiona plays a vital role in the process, sitting on panels with prominent researchers and offering a strong consumer voice in the selection high-risk, high-reward proposals for the MSRP. A volunteer with the New York City-Southern New York Chapter, Fiona is certainly helping us move toward a world free of MS.

In FY 2011, MS activists are urging Congress to provide $15 million for MS research in the CDMRP. Click here to take action today and urge your Senators' and Representative's support.

Contact Your Senators to Restore State Medicaid Relief

Medicaid provides health and long-term care coverage to more than 59 million Americans, including many people living with disabilities. With the rise in unemployment during troubled economic times, more Americans rely on Medicaid to help cover their health care costs. At the same time of enrollment growth, state budget pressures swell as revenues decline.

To help avoid drastic cuts to health services, the Recovery Act provided significant assistance to state-run Medicaid programs. This fiscal relief prevented harmful budget cuts, saved jobs and protected the healthcare coverage of those in need. The economic situation remains dire, however, and since states are currently planning their FY 2011 budgets, Congress must take immediate action to extend federal Medicaid assistance.

There is great support for extending federal Medicaid assistance. In March, the Senate passed a six-month extension of the Recovery Act's enhanced federal Medicaid match. The House just passed a similar bill, but the Medicaid provision was removed. It is up to the Senate to quickly correct this omission.

Call your Senators today using this toll-free phone number: 1-888-340-6521. Click here to learn more and receive talking points.

State Success: Delaware Income Tax Check-Off for Multiple Sclerosis

With the fragile state of the American economy, times are tight for everyone. The Delaware Chapter has seen a significant reduction in donations over the past 24 months. Less money means fewer programs and less financial assistance available for people living with multiple sclerosis in Delaware.

Benefits of an MS Tax Check-Off
After a proactive and exciting advocacy effort, the Delaware Chapter successfully passed legislation to establish a MS donation check-off on the state income tax form. Every person who files a Delaware State Income Tax form this year will see an option to make a donation to the Delaware Chapter of the MS Society.

Every dollar donated will stay in Delaware to be used for programs and services for Delawareans living with multiple sclerosis. This means that approximately 500,000 working adults will have the opportunity to make a donation. In addition to raising money, this will be a great way to raise awareness of multiple sclerosis and the MS Society simply by getting our name out there.

Section 1. Amend Title 30 of the Delaware Code by adding thereto a new section to read as follows: § 1192. The Delaware Chapter of the National Multiple Sclerosis Society Fund. An individual who claims an overpayment of taxes on an income tax return may designate that $1 or more be deducted from the refund that would otherwise be payable to the individual and, instead, be paid to the Fund.

The Division of Revenue shall forward the amounts designated for the Fund to the Delaware Chapter of the National Multiple Sclerosis Society to be used exclusively by the Delaware Chapter for the benefit of Delawareans who have been diagnosed with multiple sclerosis, and of those Delawareans who may be diagnosed in the future. A contribution to the Fund must be forwarded by the Division of Revenue to the Delaware Chapter of the National Multiple Sclerosis Society within 20 days after the receipt of the contribution.

Strategy
The Delaware Chapterʼs GRC members scheduled meetings with elected officials to take place in their offices at the state capitol. On April 1, 2009 a team of eight advocates traveled south to Dover with orange-iced cupcakes and fullcolor leave-behind postcards in hand. During the meetings with DE representatives and senators, the advocates discussed five talking points, one of which was an ask for a tax check-off bill.

The MS advocates spoke in teams of two or three at the scheduled meetings, as well as spoke to people as they ran into them in the hallways. On several other occasions, teams of advocates traveled to Legislative Hall to speak to the elected officials whom they were unable to speak with on April 1. Follow up phone calls were made and e-mails were sent to reiterate the talking points and thank them for meeting with us.

State Representative Deborah Hudson responded to an e-mail asking if we had procured a sponsor for a tax checkoff bill. We had not, and she graciously offered to be the main sponsor of the bill. Rep. Hudson had the bill drafted, and then forwarded it to the GRC for review. The GRC approved the bill as written, and thanked Rep. Hudson for taking the lead. The advocates made calls to key senators and state representatives asking them to sign on as cosponsors.

The bill had a total of three senators and an amazing 19 representatives sign on as sponsors. Small teams of three or four advocates made two additional trips down to Legislative Hall near the end of the legislative session to garner support for the bill.



Pictured above: DE Governor Jack Markell with MS activists who helped advance the tax check-off legislation. Pictured at left: Governor Markell receiving the Society's 2009 Governor of the Year award.

State Success: Health Care Stories from California Bike MS

Issue or Challenge
With healthcare reform at the forefront of our most challenging advocacy priorities this year, the California chapters have been actively seeking real-life stories from our community about how the existing system impact them that we can share with policy makers statewide and nationally.

Bringing these stories to life with eloquent people who speak effectively has continued
to be a challenge for us. We decided to set up a video booth at the our recent Bike MS Waves to Wine ride and ask people about their experiences with MS, the ride, and their health care stories.

Status
We were able to garner several hours of footage of people telling about their experience with Bike MS: Waves to Wine and their health care stories. We are in the process of putting together a short video with some of the best snippets.

Watch the Video Here

Background
One of our key success factors in making this happen was a great team of coalition partners and volunteers to help us film participants. We partnered with Health Access California who also recruited a great team from a local advocacy group www.myamericanhealthcarestory.org/ who are go out and take videos of people’s health care stories.

We were cognizant that not everyone is in favor of healthcare reform. A key success factor for this was the team at http://www.myamericanhealthcarestories.org/ being very respectful to this concern didn’t project any biases whatsoever.

Another key success factor to this video was that it was initiated by the chapter’s Advocacy team and supported and funded by the Programs Team, Communications, and The Bike MS Team. While the footage from the event can be used by each group for each of their purposes, because we were the primarily sponsor of this program, we were able to ensure that the advocacy objectives were not forgotten. It will be helpful support for health care and other legislation.

HHS WebChat on New Health Care Reform Law and Medicare

Tune in to a WebChat tomorrow, Wednesday, May 26 at 11:00 a.m. EDT to learn about how the new health care reform law will impact Medicare. Expected to speak and answer questions on the WebChat are: Marilyn Tavenner, Acting Administrator and Chief Operating Officer of the Centers for Medicare & Medicaid Services and Caya Lewis, Chief of Staff for the Centers for Medicare & Medicaid Services.

To join the WebChat on Wednesday, click here. The Chat will be archived for those unable to join. If you have questions, send them to healthreform@hhs.gov and as many as possible will be answered during the WebChat. Questions will be taken live from twitter using @HHSGOV.

Join the Global Movement

World MS Day is this Wednesday, May 26th. MS societies throughout the world are banded together for World MS Day to raise awareness about multiple sclerosis (MS). To be part of the global movement to create a world free of MS and make an important impact locally, email your U.S. Senators and Representative today and urge them to support H.R. 4213. This legislation includes provisions important to people living with MS that help ensure access to necessary treatment and services.

Approximately 40% of people living with MS in the United States depend on public health insurance programs, like Medicare and Medicaid. H.R. 4213 will keep these programs strong by preventing an imminent, devastating 21.2% cut to doctors participating in Medicare. H.R. 4213 will also continue needed assistance to state-run Medicaid programs that have been strained due to reduced revenues and increased demands for Medicaid services during the recesssion.

Take action for World MS Day. Email your Senators and Representative today.

State Success: Arizona GRC Raises Money on Walk MS Team

Challenge: After hearing that the Arizona Chapter's Programs and Services budget would have to endure FY 2010 cuts, the Arizona Government Relations Committee put their heads together to brainstorm ways to help fundraise. Many ideas were thrown around. Phone banking to friends and family, hosting a fundraiser house party, and hosting an auction party all came up in conversations. The group decided that creating a Walk MS team would be an easy first step—Team GRC.

Status: Team GRC was added to the Walk MS team database and given a fundraising page at the end of August. Some members utilized Facebook and email to fundraise. Others asked friends and family to send checks to the Chapter office. To enhance our fundraising efforts, the team planned a “House Party.” The party was held in the Conference Center of the office building where the Chapter office is located.

For about six weeks leading up to the party, team members solicited in-kind donations from local businesses for the silent auction which would be a highlight of the party. A talented, local musician whose mother has MS, performed live music and kept the crowd entertained. The Chapter Care Manager donated her talent and skill for decorating and made the Conference Center feel warm and cozy with autumn themed decorations.

During the party 55 friends, family, colleagues, and associates of Team GRC spent the evening mingling, sharing stories, bidding on auction items, and enjoying good company. The evening was fun and successful.

More than $2,000 was raised for Team GRC's Walk MS team.A week and a half later, the team total surpassed $5,000 and Team GRC was awarded team T-shirts and a team tent for the Phoenix Walk MS. Even a month after the Walk MS, donations for Team GRC were still coming in. To date, Team GRC had raised more than $5,600. The team is extremely proud of the outcome of their efforts and look forward to next year.

Participating in Walk MS was the icing on the cake—walking 3 miles with almost 4,000 others impacted by multiple sclerosis.

Web Chat on How the Health Care Reform Law Will Benefit People Living With Disabilities

Today, Thursday, May 20th at 1:00 p.m. EDT, a WebChat is being held that will discuss how the new health care reform law will benefit people living with disabilities. The WebChat will be archieved on the website after the live broadcast.

Henry Claypool, the Director of the Office of Disability at the U.S. Department of Health and Human Services (HHS), Jeffrey Crowley, Senior Advisor on Disability Policy at the White House and Meena Seshamani, Deputy Director in the Office of Health Reform at HHS are expected to lead the WebChat and answer questions from the public. Be sure to tune in today to learn the many opportunities the new law presents for people living with MS and other chronic conditions and disabilities.

Go to this website to view the WebChat. Also, in the upper right hand portion of the website, you may sign up to receive Email Updates from HHS regarding the new health care reform law.

State Success: NJ Chapter Advocacy Network

Administrative Success: Division of Vocational Rehabilitation Services

The New Jersey Division of Vocational Rehabilitation Services (DVRS) provides services that enable individuals with disabilities to find jobs or keep their existing jobs. People with MS are a notable group who often require DVR services, but the division has not been meeting their needs. The Greater Delaware Valley Chapter in the south and the New Jersey Metro Chapter in the north both heard from people with MS that DVR did not return their calls and didn’t know how to work with more professionally skilled people with MS.

> Both chapters met with legislators, voiced their concerns and tried to meet with the Department of Labor. They secured an initial meeting, expressed their frustration and subsequently held a more detailed meeting with DVR staff.

> In preparing for the meeting, DVR uncovered the statistic that when clients didn’t have MS, their cases closed within three to six months. For people with MS, it took five to seven years.

> The meeting also highlighted to DVR staff the importance of further education about MS

Result: The findings surprised the DVR staff and helped bring changes to how they handle people with MS who use their service. As a result, both chapters will hold five in-service trainings at local DVR offices to engage in ongoing education with DVR. In general, people with MS under-utilize DVR services, and the chapters will continue to work to build trust with DVR and effect change for people with MS. This progress could only have happened through collaboration between the New Jersey Metro and Greater Delaware Valley chapters.

State Success: Greater Washington Urges Repeal of 24-Month Medicare Disability Waiting Period

In 2009, the Greater Washington Chapter determined to pass a memorial to Congress to repeal the 24-month Medicare waiting period for Social Security disability beneficiaries during the 2009 state legislative session.

Feb 5, 2009: The National MS Society Day of Activism was held. Nearly 100 MS activists from throughout Washington state came to the capitol in Olympia for legislative issue training and skills development. Wearing bright orange scarves, volunteers met with each member of the Washington State Legislature. Chapter Board members and MS activists met with the chairs of the Washington State House Health Care & Wellness Committee and the Senate Health & Long Term Care Committee to discuss the need for Congress to repeal the 24-month Medicare disability waiting period. Senator Karen Keiser, Chair of the Senate Health & Long Term Care Committee, agreed to sponsor the Senate Joint Memorial.

Feb 13: Senate Joint Memorial (SJM) 8013 was introduced by Sen. Karen Keiser with an additional nine cosponsors.

Feb 16: A hearing was held before the Senate Health & Long-Term Care Committee and four Society volunteers provided testimony in support of SJM 8013.

Feb 17: SJM 8013 unanimously passed the Senate Health & Long-Term Care Committee.

March 9: SJM 8013 passed the Washington State Senate unanimously by a vote of 46-0 (three members absent). Senator Keiser's floor speech referenced people living with chronic illness and disability and spoke specifically of people living with MS.

March 20: The House Health Care & Wellness Committee held a hearing on SJM 8013 with Chapter volunteer leaders again testifying in support.

March 26: SJM 8013 passed the House Health Care & Wellness Committee by a vote of 10-3.

April 9: SJM 8013 passed the Washington State House unanimously 98-0. Representative Eileen Cody, Chair of the House Health Care & Wellness Committee, spoke of her professional experience as an MS Rehabilitative Nurse. She made note of the fact that only 26% of state residents have private insurance during the 24-month Medicare disability waiting period and that thousands of lives are affected by lack of health insurance after they have qualified for SSDI. Representative Cody also cited the high incidence rate of MS in Washington state.

April 18: SJM 8013 was filed with the Washington State Secretary of State's Office. Following this, SJM 8013 was sent to President Barak Obama, Vice President Joseph Biden, Speaker Nancy Pelosi and the Washington State Congressional delegation of nine US House members and two US Senators.

Washington is the third state to pass such a memorial to Congress.

State Success: Accessible Parking for People with Disabilities in South Carolina

Accessible parking is a serious issue for people living with multiple sclerosis and others with disabilities in South Carolina. In response, the South Carolina Government Relations Committee (GRC) began looking at this issue in 2007. Upon investigation, they found that the current SC Code of Law did not require accountability of physicians writing prescriptions for plates/placards, disability was not clearly defined, fines were not prohibitory, and access aisles were not included.

In addition, it was found that some able-bodied people were obtaining placards from physicians and using them illegally as a matter of convenience. That limited the available spaces for people who needed them. One idea was to include a photo on the placard. The current SC Code of Law also did not include disabilities such as MS in the definition of “handicapped.” The current law focused on visible physical disabilities, which prevented some people with MS from using a plate/placard.

SC GRC members and chapter staff provided testimony to Senate and House subcommittee hearings, along with the Disability Resource Center and the Upstate Accessible Parking Coalition. MS activists across teh state were called to action. When SC Advocacy Day came around in April 2009, the bill had some movement and MS activists kept pushing it forward. They spoke with 55 member of the state House, and left information for 69 others. It worked.

The bill (S.126) was ratified and signed by the governor on June 2, 2009. The changes to the SC Code of Law were enacted on December 2, 2009.

U.S. House of Representatives Recognizes MS Awareness Week

Yesterday, several members of the U.S. House of Representatives recognized the accomplishments of MS Awareness Week and promoted a continued awareness of the fight against multiple sclerosis. Congresswoman Barbara Lee (CA-9) introduced the resolution (H. Res. 1116) which was cosponsored by 108 bipartisan members of the House. On the House floor, Congresswoman Lee was joined by Congresswoman Lois Capps (CA-23) and MS Caucus Co-Chairs Russ Carnahan (MO-3) and Michael Burgess (TX-26) who all gave riveting statements complete with personal stories of how their lives have been affected by MS. The members of Congress applauded those who worked so hard to make MS Awareness week a success and drew attention to the progress that has been made surrounding effective treatment of MS, but also to the fact that more must be done to achieve a world free of MS

State Success: NC Veterans Action Leadership Team

As the North Carolina chapters of the National MS Society advocate for MS research funding through the Department of Defense, veterans living with MS in North Carolina have formed the Veterans Action Leadership Team.

VALT is a self-directed group of volunteers and veterans who are working collaboratively to increase awareness about MS and the information and referral resources of the Society, advise the Society on state and federal policies that directly impact veterans living with MS, and recommend outreach and advocacy strategies for the Carolina chapters.

When one veteran read the group's new brochure, he said, “I wish I saw something like this when I was making the transition from active duty to civilian.” Read more about the VALT here.

Ensure Affordable Access to Prescription Medications

On Tuesday April 13, the National MS Society, in collaboration with other patient advocacy organizations, hosted a national call-in day to urge Congress to address the increasing costs of prescription drugs. Reinforce this by emailing your Representative today and asking him/her to cosponsor the Affordable Access to Prescription Medications Act of 2009 (H.R. 3799).

People living with MS could save thousands of dollars a year on their needed prescription medications through this reform. H.R. 3799 would cap monthly out-of-pocket costs for prescription drugs at $200 per prescription, or $500 per month for those taking more than one medication. Be sure to email your Representative today.

Contact Senators to Support Family Caregivers

Up to one quarter of individuals living with MS require long-term care services at some point during the course of the disease and often, a family member steps into this caregiver role. Approximately 50 million family caregivers in the nation are responsible for 80% of long-term care. The value of uncompensated family care giving services keeps growing and is currently estimated at $375 billion a year.

The Lifespan Respite Care Act's enactment in 2006 represented a major step forward in recognizing the importance of and addressing the needs of family caregivers. While the law offers a great opportunity, since its creation, it has been severely underfunded.

MS activists achieved substantial support for Lifespan Respite in the U.S. House of Representatives. Contact your Senators today and urge them to support full funding for Lifespan Respite in FY 2011 by signing a Dear Colleague letter circulated by Senator Bob Casey (PA).

States Recognize MS Awareness Week

Many states secured state resolutions or proclamations recognizing Multiple Sclerosis Awareness Week 2010.

• Alabama
• Arkansas
• California
• Illinois
• Kansas
• Kentucky
• Maryland
• Michigan
• Nebraska
• Nevada
• North Carolina
• North Dakota
• Pennsylvania
• Rhode Island
• Virginia
• Wisconsin

So did many cities and towns, such as Chicago, San Diego, Arlington, Va., Bloomington, Ind., and more.

Check with your chapter about advocacy activities that happened in your state for MS Awareness Week.

Urge Your Senators to Support MS Research Funding in the CDMRP

Due to action taken by MS activists at the 2010 Public Policy Conference and back home, over 90 members of the U.S. House of Representatives signaled support for MS research funding within the Congressionally Directed Medical Research Programs (CDMRP). That is an extremely impressive amount of support. Now we need your assistance with the Senate. Click here to write your Senators today and ask them to support a $15 million appropriation under the CDMRP for MS research.

97 Members of the House Support MS Research Funding in the CDMRP

The Society is pleased and thankful that 97 members of the U.S. House of Representatives have signaled their support for MS research funding within the Congressionally Directed Medical Research Program (CDMRP) by signing on to a Dear Colleague letter circulated by Congressmen Russ Carnahan (MO-3) and Michael Burgess, MD (TX-26).

Such widespread support does not just happen—it is a direct result of the bold and dedicated work of MS activists done both at the recent Public Policy Conference and back home. This is a particularly outstanding achievement, given the many priorities Congress is handling at the moment.

Please take a moment to call or write a thank you to the House Members listed on this page that supported us this year. Stay tuned to learn about and take action on a similar Dear Colleague letter that will be circulated in the Senate!

Final Push for Health Care Reform

Your continued activism is working. Congress this week is again debating and aiming to finalize comprehensive health care reform legislation. MS activists have been engaged from the beginning and must take action once more so that comprehensive health care reform legislation, which will improve the lives of those living with MS, is enacted this year.

Remaining steadfast to the Society's National Health Care Reform Principles, MS activists have sent over 18,000 messages to Capitol Hill and made countless phone calls in support of comprehensive health care reform. Our voice has been heard and many concepts included in the Society's principles have been included in the current health care reform bill, such as:

• Prohibiting discrimination against an individual based on pre-existing health conditions;
• Placing limitations on out-of-pocket costs;
• Providing access to long-term supports and services;
• Expanding the Medicaid program;
• Providing subsidies to those who cannot afford coverage; and
• Eliminating lifetime limits on the amount of coverage a person may receive.

The U.S. House of Representatives is expected to vote later this week. Send a message to your Representative and urge him/her to support health care reform today!

2010 Public Policy Conference a Success

The Society’s 19th annual Public Policy Conference was an absolute success and we thank the over 300 MS activists who traveled to Washington to advance our 2010 legislative priorities. Before visiting over 350 offices on Capitol Hill, conference participants were fortunate to see and hear from notable and prominent members of Congress including Congresswoman Mary Jo Kilroy (OH-15) and Congressman Jim Langevin (RI-2), as well as a keynote address delivered by Special Assistant to the President for Disability Policy Kareem Dale.

In addition to program participation, Senator Sherrod Brown (OH), Representative Chris Van Hollen (MD-8th), and Governor Jack Markell (DE) each attended to accept the Society’s awards for 2009 Senator, Representative, and Governor of the Year.

During their Capitol Hill visits, activists urged their federal lawmakers to increase MS research funding in the CDMRP; fully fund the Lifespan Respite Care Act; and support the National MS and Parkinson’s Disease Registries Act. The Society also had much needed support from activists back at home, with nearly 2,700 messages sent to reinforce activists’ messages on Capitol Hill. Your work is already paying off, through increased support for our priorities and increased membership in the MS Caucus.

A resounding thank you to all who participated and supported the 2010 Public Policy Conference. Together, we can create a world free of MS.

Move It! During MS Awareness Week and Help Ensure $15 Million for MS Research

It is MS Awareness Week (March 8-14) and a particularly important time for you to Move It! to help secure $15 million for MS research.

The deadline for members of Congress to signal support for MS research funding in the Congressionally Directed Medical Research Programs (CDMRP) is fast approaching. Take action today and urge your U.S. Senators and U.S. Representative to support a $15 million appropriation under the CDMRP that will help scientists to better understand the causes of MS and help find a cure.

This research money is vital because preliminary evidence suggests that Gulf War veterans are at an increased risk of being diagnosed with MS due to exposure to neurotoxins such as gases and other combat related pollutants. Currently, more than 20,000 veterans being treated in the VHA are living with a diagnosis of MS. MS activists have already helped secure nearly $10 million to learn more about these environmental factors. Take action today and build on that momentum so that we can move closer to a world free of MS.

Ask Your Representative to Support MS Awareness Week

March 8-14th is MS Awareness Week. E-mail your U.S. Representative today ask him or her to support a resolution that formally recognizes MS Awareness Week in Congress, H. Res. 1116.

The MS Awareness Week resolution was introduced by Representative Barbara Lee (CA-9) and stresses the following important goals of MS Awareness Week: reaffirming our nation's commitment to creating a world free of MS, recognizing people living with MS, and saluting the health care professionals and medical researchers who continue to work toward a world free of MS. The resolution is a true indicator of the collective and bold support for the MS community.

Contact your U.S. Representative today and urge him or her to co-sponsor the MS Awareness Week resolution.

Support MS Activists on Capitol Hill

On Wednesday, March 3, hundreds of MS activists from across the country will meet with their federal legislators on Capitol Hill as part of the National MS Society's annual Public Policy Conference. These important visits are an essential component of the Society's year-long and constant mission to advance public policy that will improve the lives of those living with MS and other chronic conditions.

Take action today and write your members of Congress to support fellow MS activists so that our collective voice is heard.

MS activists will be discussing three priority issues on Capitol Hill:

• MS Research Funding in the Congressionally Directed Medical Research Programs (CDMRP): Emerging evidence indicates a potential link between combat service and an increased incidence of MS. MS activists have been successful in opening a new funding stream for MS research within the Congressionally Directed Medical Research Programs (CDMRP), receiving $5 million in FY 2009 and $4.5 million in FY 2010. Ask your members of Congress to support a $15 million appropriation for MS research within the CDMRP by signing the Dear Colleague letter circulated by Congressmen Russ Carnahan (MO-3rd) and Michael Burgess, MD (TX-26th) and Senators Sherrod Brown (OH) and Jim Bunning (KY).

• National MS and Parkinson's Disease Registries Act: A national MS surveillance system will help ascertain the true incidence and prevalence rates of MS nationwide, which is needed to faciliate research into potential environmental and genetic factors associated with MS. Ask your members of Congress to co-sponsor the National MS and Parkinson's Disease Registries Act (H.R.1362/S.1273).

• Full Funding of Lifespan Respite: Respite care services are vital to ensuring quality home-based care for people living with MS. The Lifespan Respite Care Act was enacted in 2006, but minimal funding has been appropriated over the past three years. Ask your member to support full funding for Lifespan Respite in FY 2011 in the amount of $94.81 million. Your Representative can signal his/her support by signing the Lifespan Respite Dear Colleague letter being circulated by Congressmen Jim Langevin (RI-2) and Lee Terry (NE-2).

Take action today to reinforce our message.

Help Secure $15 Million for MS Research

Over the past two years, MS activists have helped secure nearly $10 million for MS research through the Congressionally Directed Medical Research Programs (CDMRP). The CDMRP is a Department of Defense (DoD) program that is funded annually via the Defense Appropriations Act. Just a couple years ago, there was no MS program in the CDMRP. As a direct result of your activism, not only does MS now have a specific research program but people living with MS also sit on the award panels to help determine how this research money is being spent.

Take action today and ask your members of Congress to support a $15 million appropriation under the CDMRP that will help scientists to better understand the causes of MS and help find a cure. We are asking all legislators to sign a Dear Colleague letter being circulated by Congressmen Russ Carnahan (MO-3) and Michael Burgess, MD (TX-26) in the U.S. House of Representatives and Senators Sherrod Brown (OH) and Jim Bunning (KY) in the U.S. Senate.

Preliminary evidence suggests that Gulf War veterans are at an increased risk of being diagnosed with MS. Currently, more than 20,000 veterans are being treated in the VHA with a diagnosis of MS. Many veterans have relevant stories and symptoms of MS. Take action today so that more MS research funding will be made available, benefiting not only our veterans but moving us closer to a world free of MS.

MS Activists Tour the White House Holiday Decorations

By invitation of the White House, the Society's Public Policy Office accompanied four MS Activists to the White House to view the holiday decorations in the East Wing. Attendees included: Doris Matchett and her dog Linus, Yvonne Brown, Karen Jackson, Dana McLeod, and Shawn O'Neail. In addition to seeing historical decorations from the days of President Lincoln and getting a chance to visit the State Dining Room, the MS crew enjoyed holiday tunes from Seaford, DE elementary school children.

In the News: $4.5 Million for Continued MS Research Funding in the CDMRP

As a neurologist and Director of the Spinal Cord Injury/Dysfunction Service and the Multiple Sclerosis Center at the St. Louis Veterans Administration Hospital and longtime volunteer with the Gateway Area Chapter of the National MS Society, I am intimately familiar with the realities of living with multiple sclerosis. That is why I am very pleased to announce that $4.5 million has been appropriated for continued MS research through the Congressionally Directed Medical Research Program. The research being conducted by this program is funded through the Department of Defense and will serve to benefit the 28,000 veterans living with MS, as well as every other life touched by the disease.

This is an excerpt from a December 31, 2009 article in the St. Louis Post-Dispatch. Read the full Letter to the Editor.