Current Treatments
BETASERON® (interferon beta-1b) is indicated for the treatment of relapsing forms of multiple sclerosis to reduce the frequency of clinical exacerbations. Patients with multiple sclerosis in whom efficacy has been demonstrated include patients who have experienced a first clinical episode and have MRI features consistent with multiple sclerosis

AVONEX® (Interferon beta-1a) is a 166 amino acid glycoprotein with a predicted molecular weight of approximately 22,500 daltons. It is produced by recombinant DNA technology using genetically engineered Chinese Hamster Ovary cells into which the human interferon beta gene has been introduced. The amino acid sequence of AVONEX® is identical to that of natural human interferon beta.

COPAXONE is the brand name for glatiramer acetate (formerly known as copolymer-1). Glatiramer acetate, the active ingredient of COPAXONE, consists of the acetate salts of synthetic polypeptides, containing four naturally occurring amino acids: L-glutamic acid, L-alanine, L-tyrosine, and L-lysine with an average molar fraction of 0.141, 0.427, 0.095, and 0.338, respectively. The average molecular weight of glatiramer acetate is 5,000 – 9,000 daltons. Glatiramer acetate is identified by specific antibodies.

Rebif® (interferon beta-1a) is a purified 166 amino acid glycoprotein with a molecular weight of approximately 22,500 daltons. It is produced by recombinant DNA technology using genetically engineered Chinese Hamster Ovary cells into which the human interferon beta gene has been introduced. The amino acid sequence of Rebif® is identical to that of natural fibroblast derived human interferon beta. Natural interferon beta and interferon beta-1a (Rebif®) are glycosylated with each containing a single N-linked complex carbohydrate moiety.

Tysabri is a monoclonal antibody that affects the actions of the body's immune system. Monoclonal antibodies are made to target and destroy only certain cells in the body. This may help to protect healthy cells from damage. Tysabri is used to treat relapsing forms of multiple sclerosis.
Gilenya™ is a new class of medication called a phingosine 1-phosphate receptormodulator, which is thought to act by retaining certain white blood cells (lympohcytes) in the lymph nodes, thereby preventing those cells from crossing the blood-brain barrier into the central nervous system (CNS). Preventing the entry of these cells into the CNS reduces inflammatory damage to nerve cells.


Early Symptoms
The most common early symptoms of MS include:
* Tingling * Numbness
* Loss of balance
* Weakness in one or more limbs
* Blurred or double vision

Less common symptoms of MS may include
* Slurred speech
* Sudden onset of paralysis
* Lack of coordination
* Cognitive difficulties
Listed above, the early symptoms. I tend to be a poster child for these. The symptoms that occur later on are too numerous just to list. There will be a link included that will get you to a site where these symptoms are listed and explained. Keep in mind that someone may have some of these or many of these, there is no way to tell.
Multiple sclerosis statistics show that approximately 250,000 to 350,000 people in the United States have been diagnosed with this disease. The life expectancy for people with multiple sclerosis is nearly the same as for those without MS. Because of this, multiple sclerosis statistics place the annual cost of MS in the United States in the billions of dollars. MS is five times more prevalent in temperate climates -- such as those found in the northern United States, Canada, and Europe -- than in tropical regions. Furthermore, the age of 15 seems to be significant in terms of risk for developing the disease. Some studies indicate that a person moving from a high-risk (temperate) to a low-risk (tropical) area before the age of 15 tends to adopt the risk (in this case, low) of the new area and vice versa. Other studies suggest that people moving after age 15 maintain the risk of the area where they grew up.

Friday, September 6, 2013

Federal Focus-September 2013


Urge Your Members of Congress to Attend a Briefing on Medical Research and Progressive MS
Next Thursday, September 12, the National MS Society in partnership with the Congressional MS Caucus is hosting a briefing on Capitol Hill to educate members of Congress and their staff about why more medical research is needed—especially for progressive MS. Email your members of Congress today to urge them or their staff to attend this important briefing!
 
Research is moving us closer to a world free of MS. In the past 20 years, the first drugs to slow the progression of some types of MS were brought to market. However, the most progressive forms of the disease have no approved treatments and there is still no cure for any course of the disease. Speakers will discuss how the Society often acts as a co-financer of important National Institutes of Health research initiatives, promising research happening now and the need for maintained research funding to help those with progressive MS and one day, deliver a cure.
 
In an era of tough budget times, it’s vital that members of Congress know that continued research funding is incredibly important to people affected by MS. Click here to email your members of Congress and urge them or their staff to attend this educational briefing.
 
Educate Yourself About Health Care Options
Starting in October, most people who do not already have health insurance will be able to sign up for coverage that takes effect in January 2014. People who already have health coverage can keep what they have. To learn about your options, we urge you to read information posted here.
 
There are fact sheets for people in different situations—for instance, those who have job-based coverage, who rely on Medicare, or buy their own coverage. Another fact sheet in the series is “Help for People with High Medical Expenses.” There are several exciting changes that the Society advocated for through health care reform including tax credits for some individuals, families and small businesses to make coverage more affordable. Also, insurers will no longer be able to deny coverage or charge more because of a pre-existing condition like MS.
 
Information is power and we urge you to start educating yourself to learn how health care reform will impact you. If you have questions, a 24 hour toll free phone line and online chat support are available now.
 
Society Submits Testimony to the Long-term Care Commission
Several months ago, Congress established a bipartisan Long-term Care Commission that is supposed to develop policy recommendations to strengthen long-term services and supports (LTSS) in our country. The Commission held four public meetings to hear how LTSS are currently provided through public programs like Medicaid and Medicare and through private long-term care insurance, about the different populations who need LTSS and issues to consider when trying to strengthen the LTSS workforce.
 
To help educate the Long-term Care Commission about the LTSS needs of people with MS, the Society submitted this testimony. Approximately 20-25% of individuals with MS need long-term care (LTC) services and approximately 5-10% will require residential care. The testimony discusses how MS impacts the whole family; supports helpful to keep people at home for as long as possible including support for family caregivers and adult day centers that specialize in the MS population; and the need for more nursing homes that can support a younger disabled population.
 
The Long-term Care Commission is expected to finish its report for Congress in mid-September. It is unclear at this point what next steps will be, but the Society will continue to advocate for more flexible, affordable LTSS options for people with MS. Many of you have signed a petition that we’ve been promoting. Once we reach 10,000 signatures, we will deliver the petition to Congress to urge them to reform LTSS in our country. If you haven’t already, sign the petition today!

Friday, August 2, 2013

Federal Focus - August 2013

Congress Heading Home for August Recess Congress has been busy wrapping up some items before members head back to their states for a month-long break. In addition to a Medicare-related bill, both the House and Senate have been working on annual funding bills that provide support for departments and programs important to people with MS including the National Institutes of Health (NIH). The start of the fiscal year (October 1) isn’t too far off and some already speculate that Congress will pass a Continuing Resolution to buy more time to complete the annual funding process. MS activists will be busy meeting with their members of Congress who are home for August recess to discuss our funding priorities for the year: the NIH, MS research funding through the Congressionally Directed Medical Research Programs (CDMRP) and the Food and Drug Administration (FDA). These visits are part of our year round advocacy to ensure that MS research is well funded and that the FDA has adequate resources to review and approve devices and new treatments for people with MS. If you are interested in attending August recess visits with members of Congress, contact your local Society chapter. International Rights Treaty Update Many of you have taken action urging your U.S. Senators to support the UN Convention on the Rights of Persons with Disabilities (CRPD). The CRPD aims to create a more accessible world where Americans with disabilities—including veterans— have increased independence and equal rights to continue to work, serve, study, live or travel abroad. The Senate voted on the treaty in the 112th (last) Congress, but fell short of ratification. Because a new Congress began in January, the treaty has to start from the beginning and be approved by Committee before the full Senate can vote on it. The most recent indications are that the Senate Foreign Relations Committee may hold a hearing on the CRPD in September or October. Stay tuned for opportunities to take action and ensure your Senators’ support for the CRPD.

Friday, May 10, 2013

Federal Focus - May 2013

Tell Congress to Strengthen Long-Term Care The Society is working closely with other organizations concerned with the lack of affordable, flexible long-term care options in our country. As part of that effort, we encourage activists to sign this online petition. It asks that Congress re-evaluate current long-term services and supports options and create broader access to address the growing need. As part of the health care reform law, Congress created a voluntary long-term insurance program that would have provided a cash benefit to people who become functionally or cognitively impaired. This provision could have helped people maintain their independence and remain living in their communities. The Society and many other advocacy organizations supported this program but it was eventually deemed financially unsustainable and was repealed. In its absence, Congress has established a bipartisan Long-term Care Commission that is tasked with developing policy recommendations to strengthen long-term services and supports. Even though the Commission members have been appointed, it has not yet met formally and it is unclear when they will begin their important work. Congress needs to hear about how important this issue is and that’s why we encourage you to sign the online petition. About a quarter of people with MS will require long-term care at some point in their lives, when the symptoms become particularly severe and/or the disease has significantly progressed. Family members often become the primary providers of care, but people with MS also rely greatly on home health care workers, personal care attendants, other community supports, adult day achievement centers and residential settings. This online petition advocates for a broad array of options for people—from home- and community-based services to residential—and stresses that the options be affordable. Currently, too many people are forced to spend down into poverty in order to access these vital services. Be sure to sign the petition today! MS Research Funding Victory in FY 2013 Budget, as Congress Begins FY 2014 Appropriations Work In late March, Congress and the President agreed to a continuing resolution, which will fund the federal government through the end of Fiscal Year (FY) 2013. Shortly after this agreement was made, the Society received word from the Department of Defense that the Congressionally Directed Medical Research Program for MS received $5.0 million, a $1.2 million increase over FY 2012! Given the federal budget issues, this is a huge accomplishment for the MS community. This 30 percent increase can all be attributed to the hard work of MS activists over the past year, as they repeatedly contacted their Members to ask them to support this level of funding. Congrats MS activists! With FY 2013 funding levels decided, Congress has started the appropriations process for FY 2014. As part of this, over the past few weeks, MS activists worked hard asking their members of Congress to support funding for MS research through the National Institutes of Health (NIH) and the CDMRP, as well as funding for the Lifespan Respite Care Program on letters that are sent to the Appropriations Committees. This year, MS activists helped garner impressive support: 168 members of the U.S. House of Representatives and 52 U.S. Senators support funding for the NIH, 56 Representatives and 8 Senators support MS research funding in the CDMRP and 35 Representatives support funding for Lifespan Respite (there was no Senate Lifespan Respite letter). Excellent work, MS activists! We will update you as the appropriations process continues with other opportunities for action. International Disability Rights Treaty Update The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is expected to receive new hearings in the Senate Foreign Relations Committee, possibly as early as the week of May 20th. This is the same treaty that the Society pushed heavily during the previous Congress and that MS activists around the country reached out to their Senators asking them to support. Now, since it is a new Congress, the process needs to start over—beginning with the Senate Foreign Relations Committee. The Society continues to strongly support the treaty. Currently, we are focusing advocacy efforts on highlighting the positive impact the treaty will have for Americans with disabilities, and the benefit to American businesses by opening additional markets for American made goods, which will spur new economic growth. Additionally, the CRPD will help create a level playing field between U.S. businesses that are ADA compliant and businesses in other countries that currently do not have comparable workplace standards. Stay tuned for opportunities to take action and help move the CRPD forward to ratification

Saturday, April 13, 2013

Encourage Congressional Support for MS Priorities

Over the past two weeks, Members of the House of Representatives have circulated ‘Dear Colleague’ letters, urging members to formally signal support for certain funding priorities. During this time, three letters have been generated in support of funding for MS issues: the National Institutes of Health (NIH), the MS program in the Congressionally Directed Medical Research Program (CDMRP) and the Lifespan Respite Care program. This week, the CDMRP letter was sent to the House Appropriations Committee with 52 co-signers supporting $10 million for fiscal year (FY) 2014. The other two letters will remain open until next week, as additional signatures are collected. Please take a minute to ensure the greatest support for NIH and the Lifespan Respite Care Program by contacting your Member today and urge him/her to co-sign these letters! National MS Society Sponsors Rally for Medical Research On April 8, the Society joined thousands of advocates in Washington, D.C., to call on Congress to increase funding for medical research, which was cut in early March due to sequestration. Nearly 200 organizations and a handful of lawmakers, including MS Caucus co-chair Rep. Chris Van Holler (MD-8), participated in the event, reflecting the importance of research on health and the economy. The sequester, or across the board cuts, reduced the budget for the National Institutes of Health (NIH) by roughly $1.5 billion this year. In addition, the Congressionally Directed Medical Research Programs (CDMRP) within the Department of Defense also faces cuts, with the exact amount to be determined in the upcoming weeks. The Society and others have warned that reductions and uncertainty in research funding will postpone medical breakthroughs and set research back considerably. This message was echoed on Monday, as MS Activists and others sent several thousand emails and text messages to Congress asking them to make research funding a priority. President Releases Budget Plan; Includes Compromises On April 10, President Obama released his proposed budget for fiscal year (FY) 2014. Generally, the President proposes to cancel sequestration and replace it with an additional $1.8 trillion in deficit reduction through new revenue, $400 billion in "health savings," Social Security changes, and $200 billion in discretionary cuts split evenly between defense and nondefense programs. The president’s budget is unlikely to pass Congress or be enacted exactly as proposed, but the document underscores the White House’s priorities. While many programs face potential downsizing, the White House budget proposes a 5 percent increase in funding for the Department of Health and Human Services. The President is requesting $80.1 billion in discretionary funding for the Department of Health and Human Services, up $3.1 billion (5.1 percent) from the $76.2 billion enacted for fiscal 2012. The president's 2014 proposed budget does not reflect recent appropriations or sequestration spending figures (for 2013). Specifically, the Food and Drug administration is slated to receive an increase, with a proposed budget of $4.7 billion, an $821 million increase (or 21 percent) over its 2012 budget. Much of that increase would come from new “user fees” (or charges to the medical device and drug industries the FDA regulates). Additionally, the National Institutes of Health (NIH) budget would increase slightly to $31.2 billion from the $30.7 billion enacted in fiscal year 2012. Conversely, the budget also proposes some reductions in health spending. The budget spells out plans to generate $389 billion through Medicare cuts and other HHS-related savings over a 10-year period. Long-term Care Commission Established As part of the deal that averted the fiscal cliff last December, Congress repealed the Community Living Assistance Services and Supports (CLASS) Program. Planned as a voluntary long-term insurance program, CLASS would have provided a cash benefit to people who become functionally or cognitively impaired and could have helped them maintain their independence and lives in their communities. CLASS was originally enacted as part of health care reform, but was ultimately determined to be financially unsustainable. When it repealed CLASS, Congress established a bipartisan Long-term Care Commission that is tasked with developing policy proposals that could provide more flexible, affordable long-term services and support options. All appointees have now been named to the Commission, which will have six months in which to complete its important work once some administrative details are finalized.

Tuesday, April 9, 2013

Muck Fest-please help out & donate

Just Click on This Link and follow the instructions provided. http://main.nationalmssociety.org/site/TR/MuckFest/MAMMUCKEvents?team_id=332214&pg=team&fr_id=21243 Your help is greatly appreciated.

Sunday, April 7, 2013

How fun is it?

You can still save $25 on your MuckFest™ MS Boston registration. MuckFest MS is the best mud and obstacle fun-run in the nation. How fun is it? It's so fun that the only cramp our runners get is from laughing too hard. But, no joke, this $25 discount ends soon, so don't wait. We say "the more, the muckier," and frankly, it just won't be as mucky without you. When's the last time your weekend was both fun and mucky? Click on the link to register and save $25 in the process. www.MuckFestMS/register/Boston Sign up today and tell your friends, and think about what you'll do with that extra $25 in your pocket. We look forward to seeing you in the mud! The MuckFest MS Staff What is the philosophy of MuckFest MS? Our philosophy is simple: make it challenging and make it fun. Oh, and dirty, definitely make it dirty. Very dirty. Join us at http://www.MuckFestMS.com Unsubscribe | Email Preferences | Forward to a Friend | Privacy Policy MuckFest MS c/o Event 360, Inc. 205 N. Michigan Avenue Suite 2640 Chicago, IL 60601 800-3-GoMuck National MS Society - Greater New England Chapter 101A First Ave Suite 6 Waltham, MA 02451 Thank you to our National MuckFestival sponsor: MuckFest MS - Tide BW

Saturday, April 6, 2013

MS Events What's Happening near YOU!

Because MS affects more than just the individual diagnosed, all our programs welcome friends and family members unaccompanied by a person with MS. Register now! Outside organization events Live in New Hampshire? Help the Statewide Independent Living Council learn about the issues people living with disabilities face by completing this survey by April 12. Introduction to the Department of Veterans Affairs: Benefits, Health Care & Employment Services Eligibility and access to services earned through military service. Q&A to follow Speakers: Erik B. Johannessen, LICSW, Manchester VA Medical Center Location: A-TECH Services, 57 Regional Drive, Concord, NH on April 18 from 2- 4 pm FREE, pre-registration is required. RSVP to NH Governor’s Commission on Disability Call: 1-800-852-3405 / Email: disability@nh.gov MS Lakes Self Help Group – Friday, April 5, 2013, 1:00 – 3:00 pm Guest Instructor: Betty Webster for Gentle Yoga Peterborough Self-Help Group – Saturday, April 6, 2013, 10:00 - Noon Guest speaker: All-Ways Accessible Bangor-Brewer Self Help Group – Tuesday, April 9, 2013, Noon – 1:30 pm “Ask the Doctor” with Dr. Sandoval, EMMC Rehabilitation Portland Self Help Group – Wednesday, April 10, 2013, 5:30 – 7:00 pm Special Caregiver Group addition Sanford Self Help Group – Thursday, April 11, 2013, 6:00 – 7:30 pm Guest Speaker: Carlisle Academy on therapeutic and adaptive riding Sick of It! Living Beyond Illness Navigate the spiritual journey of illness, explore existential issues: letting go, accepting limitations, and living with uncertainty. Give voice to the illness experience in a new way. Location: Wright Tavern Center for Spiritual Renewal at First Parish in Concord, MA. Date: Sunday, April 21 Time: 4:30-6:30pm. More information and registration at http://www.wrighttavern.org/cms/ Winslow Self Help Group – Wednesday, April 24, 2013, 6:00 – 7:30 pm “Ask the Doctor” with Robert Bomprezzi, MD, PhD of Maine General Neurology Lebanon/Upper Valley Self Help Group- Tuesday, May 21, 2013, 6:00 pm- 7:30 pm “Ask the Doctor” with Brant Oliver, MD, MS Center of New Hampshire at Concord Hospital Easter Seals Massachusetts 2013 Assistive Technology Conference and Exposition on Monday, June 3 at the DCU Center in Worcester, Mass. http://ma.easterseals.com/site/PageServer?pagename=MADR_homepage Spring Teleconference Series - Missed a call? Go to Online Learning for archived recordings NH Spring Education Program – Sunday April 28th, Concord, NH VT Spring Education Program – Saturday May 18th, Stowe, VT MS Care Fair – Saturday May 18th, Attleboro, MA Let’s Get Organized! – Saturday May 4th, Bangor ME MS: Living Now & Looking Forward Conference – Saturday June 1st, Randolph, MA MS Vacation Week - June 9th-14th, Hebron, CT. Application Deadline May 15 Newly Diagnosed Beyond Diagnosis: Moving Forward – programs in MA & VT (April 20), and NH (June 29) “Can We Talk?” Newly Diagnosed Conference Calls: April 9, May 14, June 19 Tell Us Your Story Share your story and experiences. Stories may appear online, in MSConnections or shared with other media sources such as Momentum or mainstream print. Help spread MS awareness! *** SPECIAL REQUEST: Are you a person with MS who was denied Medicaid eligibility due to your income? Please contact michelle.dickson@nmss.org or call 1800-344-4867, option 2 ext 87146. Save the dates A Shared Promise: Annual Meeting of Members Research Update and EXPO Saturday, October 26 Doubletree, Portland ME Best Western, Marlborough MA Church Landing, Meredith NH Hilton, Burlington VT Everyday Matters: Wells ME, 5-week series. Learn to find your positives and strengths. Contact Heidi at 207-862-2148 for information. Registration opens April 15. Programs without Borders Café con Leche: Aproveche la oportunidad para hablar de sus preocupaciones y conozca a otras personas que entienden su situación. Computer Outreach Program Stay connected! For people who are restricted to their homes or living in long term care facilities without access to a computer. Contact Allyssa at 800-34-4867, option 2, ext 87402 Emotional Support in-person, on the phone, caregiver, professionally led and peer led. Get fit & have fun! Physical Wellness Reimbursement and Adaptive Recreation Reimbursement Online Resources: Teleconferences, Ask the Expert, Knowledge is Power, Learn Online & more Action Alert: Be a part of the issues important to people with MS at the federal, state and local levels. Making Connections: Share what you know when, where and how you want. Access to the best resources the MS community can bring you. Volunteer! Work in, around and behind the scenes. To learn more email Brenda.Barbour@nmss.org WALK, BIKE, RUN, CLIMB, PULL, BOAT, Muckfest, Challenge and DIY Fundraising SSDI Questions? Interested in checking in with our expert? Please call 781-693-5155 to schedule a phone consultation. Information & Referral Resource Center: Resources & services; financial assistance; Dora Lipcon Lending Library; care management & more. Contact: generalmailboxgne@nmss.org or 1-800-344-4867 To find out about other programs & events or to register: Online www.MSnewengland.org Call 1-800-344-4867 Be a fan of the Greater New England Chapter! www.facebook.com/MSnewengland

Friday, April 5, 2013

Preserve Federally Funded MS Medical Research

Preserve Federally-Funded MS Medical Research Take Action! Federal funding for life-changing medical research continues to erode – particularly with the recent enactment of the across-the-board cuts known as sequestration. To drive progress and pursue breakthroughs in MS research during this time of enormous scientific and medical opportunity, we must persistently remind Congress to support research funding through the National Institutes of Health and Department of Defense’s MS Congressionally Directed Medical Research Program. On April 8, Americans will come together to Rally for Medical Research – a unified call to our nation’s policymakers to make critical medical research funding a national priority. Sustained investment in medical research will improve our nation’s health, spur progress, inspire hope and improve lives. Please, reach out to your members of Congress and ask them to work together to preserve the nation’s investment in medical research and the health of the American people.

Monday, April 1, 2013

Urge Your Representative to Support MS Funding Priorities

Each year, Congress works on the federal budget – and is just starting this process for Fiscal Year 2014! During this process, MS activists must let members know now what is important to people with MS and their families. As always, we are urging Congress to continue funding MS research through both the National Institutes of Health (NIH) and the Congressionally Directed Medical Research Programs (CDMRP). Research funding is essential to keep scientists’ momentum going in better understanding MS, developing more effective treatments and one day, finding a cure. We also want Congress to continue funding the Lifespan Respite Care Program. This program helps states better deliver quality respite care that provides family caregivers with the relief necessary to maintain their own health and the well-being and cohesion of their family. The first step in the budget process is done by the House and Senate Appropriations Committees. To help inform their decisions, members of Congress send “Dear Colleague” letters to the Appropriations Committees, recommending certain funding levels. Click here to take action and urge your U.S. Representative to sign-on to these letters to support adequate funding for MS research at the NIH and CDMRP, as well support family caregivers through the Lifespan Respite Care Program. In your message, let your Representative know why MS research funding and family caregivers are important to you! In the near future, there will be an opportunity to ask your Senators to support similar letters.

Saturday, March 23, 2013

MSConnection Spring 2013

Table of Contents — Spring 2013 Issue MSConnection cover thumbnail MSConnection From the President FAMILY CONNECTIONS: When It’s Your Child Victory in Medicare Settlement Programs The Boston Home Opens the Wheelchair Enhancement Center MSCONNECTION.ORG Dora Lipcon Lending Library New Additions Share What You Know MS Awareness Week! New Teleconferences Help is a Call Away Wellness Scholarship Program Keep S’myelin In Touch Phone Groups MS Learn Online My Life My MS My Decisions Home LINKS Ask the Experts Living with MS Accessibility in the Home Love, Marriage, and MS Is It Harder to Work with MS? Research Research Advocate Partnering on Progressive MS Study Suggests Eyes Offer Unique Window to MS Damage and Repair Being Overweight May Be Associated With an Increased Risk of Developing MS People Living With MS May Hold the Key to Curing MS Advocacy Federal State Updates New Election Results = New MS Grass Top Connections to Public Officials! Volunteers Meet the Chairman Join The Movement Volunteer! Fundraising Passes for MS Celebrate MS Awareness with an Orange Blossom! Upcoming Events Calendar of Events - see current calendar Classified Ads - see current listings Programs Catalog - see upcoming programs list

Thursday, March 14, 2013

MS & You: What's Happening near YOU

Register now! Because MS affects more than just the individual diagnosed, all our programs welcome friends and family members unaccompanied by a person with MS. Outside organization events Young Adults with MS – Wakefield MA: Meet Caitlin Dion, MS Nurse from Lahey MS Clinic, on Thursday March 14 for “Ask the Nurse”. Beebe Library 345 Main St. Contact Adam at 781-548-9202 or adam.pinkney@ymail.com MS Awareness Week – What will you do to Join the Movement! You & Your Family Game On! Multicultural Outreach: Dorchester MA Kids Get MS Too: for families of children diagnosed with MS Caring Connections: for family & friends who have a loved one with MS Are you diagnosed in the past 5 years? Beyond Diagnosis: Moving Forward – multiple sites Can We Talk?: Teleconference series Education and Health: Employment Teleconferences and Spring Teleconference Series: Missed a call? You can listen to recordings MS Care Fair: Attleboro MA (registration coming soon) NH Spring Education Day: Concord NH VT Spring Education Day: Stowe VT MS: Living Now & Looking Forward: Randolph MA (registration coming soon) Vacation Week: for people requiring a high level of accessibility Programs without Borders Computer Outreach Program Stay connected! For people who are restricted to their homes or living in long term care facilities without access to a computer. Contact Allyssa at 800-34-4867, option 2, ext 87402 Emotional Support in-person, on the phone, caregiver, professionally led and peer led. Get fit & have fun! Physical Wellness Reimbursement and Adaptive Recreation Reimbursement Action Alert: Be a part of the issues important to people with MS at the federal, state and local levels. Online Resources: Teleconferences, Ask the Expert, Knowledge is Power, Learn Online & more Making Connections: Share what you know when, where and how you want. Access to the best resources the MS community can bring you. Volunteer! Work in, around and behind the scenes. To learn more email Brenda.Barbour@nmss.org WALK, BIKE, RUN, CLIMB, PULL, BOAT, Muckfest, Challenge and DIY Fundraising SSDI Questions? Interested in checking in with our expert? Please call 781-693-5155 to schedule a phone consultation. Information & Referral Resource Center: Resources & services; financial assistance; Dora Lipcon Lending Library; care management & more. Contact: generalmailboxgne@nmss.org or 1-800-344-4867 To find out about other programs & events or to register: Online www.MSnewengland.org Call 1-800-344-4867 Be a fan of the Greater New England Chapter! www.facebook.com/MSnewengland

Saturday, March 2, 2013

MS Awareness Week 2013, March 11-17

What if we could connect every person living with MS? Every person who cares about someone with MS. Every family affected by it. Everyone who has seen what this disease can do to people. What if we could come together, even one day a year, to show the power of our connections? MS Awareness Week is a time when our connections become more powerful than the connections MS destroys. Every day we see people connect to make a difference. It can be as simple as a man in Massachusetts clicking “share” on an article on how to keep health insurance coverage — it stops a woman in New Hampshire from losing her health insurance, which would mean she could afford her daily medications. MS Awareness Week, March 11–17, 2013 is a time for people affected by MS to connect with others, share knowledge and take action to increase awareness about the disease. Your voice and the connections you create will make the movement even more powerful. EVERY CONNECTION COUNTS Join the community at MSconnection.org Twitter Chat Join us March 14 from 12 noon to 1 pm for a Twitter chat with Dr. Ellen Lathi, Director of the MS Center at St Elizabeth's in Boston. Here's your chance to have your questions about MS answered by an expert. Use the Greater New England Chapter's Twitter handle @MS_NewEngland and the hash tag #askmsexpert. Flags of Hope In each of the four states in the Greater New England Chapter, there will be a Flags of Hope display, with one orange flag representing each person who has multiple sclerosis in that state. You can volunteer to help install and remove the flags in honor of your loved one who has MS, or for yourself, if you have MS. See video from last year's Flags of Hope at http://www.youtube.com/watch?v=1Pir8jReNHE. Contact emily.flanders@nmss.org to make arrangements to volunteer. Bernie and Phyl’s – Saugus, MA, Saturday 3/9/13, 8:30am – 10:30am RJ Kelly Company – Burlington, MA – Mall Road, Sunday 3/10/13, 10:00am – 12 noon HealthSouth New England Rehab Hospital – Portland, ME, Monday 3/11/13, 1:00pm –3:00pm Bedford NH, date and time TBD University of Vermont – Burlington, VT, Sunday, 3/10/13, 2pm – 3pm Ribbons of Hope at Church St. – Burlington, VT, Monday 3/11/13, 10am – 12:30pm MS Awareness Week Ribbons 2012 MS Awareness Week Flags 2012 MS Awareness Week Flags 2012 MS Awareness Week Activities What you can do to help build awareness to MS Awareness Greater New England Chapter activities in and around MS Awareness Week National Multiple Sclerosis Society, Greater New England Chapter 101A First Avenue, Suite 6 | Waltham, Mass. 02451-1115 tel: 1 800-344-4867 | fax: 1 781-890-2089 | MSnewengland.org Early and ongoing treatment with an FDA-approved therapy can make a difference for people with multiple sclerosis. Learn about your options by talking to your health care professional and contacting the National MS Society at http://main.nationalmssociety.org/ or 1-800-FIGHT-MS (344-4867). Our postal address is: National Multiple Sclerosis Society 733 Third Avenue

Friday, March 1, 2013

National MS Education and Awareness Month with WEGO Health

Greetings from WEGO Health, My name is Susan and I head up the WEGO Health Activist Network - a place where bloggers, tweeters, and facebook leaders come together to share information, learn from one another, and find tools to further their advocacy within the online health community. As you may know, March is National MS Education and Awareness Month and WEGO Health is interested in working with Health Activists in this community to help raise awareness and educate our other Health Activists. I'm reaching out to you today to see if you might be interested in getting involved. We have a number of ways for you to get involved including sharing your story, sharing your awareness program with our audience, interviewing you for our blog, having you write a guest post for our blog, etc. If you're interested in learning more, please let me know by replying to this email! You can also join the WEGO Health network at www.wegohealth.com or follow us on Twitter/Like us on Facebook to help raise awareness. I look forward to chatting with you! Best, Susan Mees

Saturday, February 9, 2013

Federal Focus - February 2013

Take Action to Preserve Research Funding This week President Obama urged Congress to delay sequestration, which is set to take place March 1. Sequestration would impose across the board cuts to most government programs, including key research agencies/programs like the National Institutes of Health (NIH), the Congressionally Directed Medical Research Programs (CDMRP) and the Food and Drug Administration (FDA). Take action now to preserve research funding! In 2011, a bipartisan group of Representatives and Senators was appointed to develop a detailed plan for long-term federal deficit reduction but since they failed to come to an agreement, sequestration was originally scheduled to take place January 2, 2013. Late last year, lawmakers punted the first scheduled implementation date of sequestration until March 2013 as part of the deal to avert the so-called ‘Fiscal Cliff’, in hopes of coming to a different agreement to address the federal deficit. With less than a month to go, Congress has not been able to agree on a strategy and the potential for sequestration to actually happen is becoming more likely by the day. The Society is partnering with Research!America and dozens of other groups to urge Congress to stop sequestration and the indeterminate cuts to research. A United for Medical Research study shows that up to 20,000 researchers could be impacted by sequestration. Cuts this deep will no doubt set our collective research efforts back in a measurable way! Our nation is facing growing health challenges and we must boost rather than slash investments in research to find new life-saving cures, treatments and prevention strategies. At a minimum, we should hold the line and keep the federal commitment at current levels. Please take action now and tell Congress to stop these cuts to research! Be a Digital MS Activist The MS Activist Network is over 70,000 strong. In 2012, MS activists sent tens of thousands of emails to Congress asking their support on a multitude of issues important to people with MS and their families. We will continue this type of advocacy this year, but wanted to provide MS activists with other exciting ways to engage. In the ever evolving world of social media, we urge you to become a digital MS activist! What does being a digital MS activist mean? Digital MS activists—like all MS activists—want to drive change and do so by amplifying their voice over social media. We’ve created this helpful website that has step-by-step instructions on how to get informed, Rise Up!, take action and recruit. It will teach you not only how to share your story and connect with other MS activists, but with elected officials who are in prime positions to drive change on a grand scale. We even have a special campaign around the Society’s upcoming Public Policy Conference, when over 300 MS activists will visit Capitol Hill to raise awareness about MS and urge support of our funding priorities. Not everyone can be there, but digital MS activists can participate virtually and help magnify our impact. Learn how to join and help shape the conversation today—we promise you, people will listen!

Monday, January 7, 2013

UMASS Focus group recruitment

Dear Friend, Happy New Year to you and your loved ones! We hope you had a wonderful holiday season. We wanted to share this opportunity for you to participate in a focus group that is being run by the University of Massachusetts. Sessions will be held in Boston, Fall River, Greenfield, Lowell and Worcester, and there is a $50 stipend for those who are selected and participate. Please see the eligibility criteria and contact information below. Thank you and have a great day. UMASS FOCUS GROUP Recruitment The University of Massachusetts Medical School’s Center for Health Policy and Research is conducting a study to understand the types of health care services people with disabilities need in order to work or return to work. We are looking for volunteers to participate in a focus group, which is a group discussion that lasts about 2 hours. If you participate in a focus group, you will be paid $50 for your time. Refreshments will be provided. Focus groups will be held in Boston, Fall River, Greenfield, Lowell, and Worcester in early 2013. To volunteer, you must: Be a person with a physical disability, mental or emotional problem, a sensory impairment (such as blindness or deafness), or a long-term or chronic disease Be currently receiving employer-sponsored or private health insurance or Medicare (in addition to other insurance, you may also be receiving Medicaid or MassHealth) Be currently employed either full-time or part-time, or actively looking for a job Speak English or use American Sign Language Be working age, between 21-64 years of age Live in the community For more information or to volunteer for a focus group, please contact Laura Sefton by calling (508) 856-4213 or emailing Laura.Sefton@umassmed.edu. Please leave your name, e-mail address and/or phone number so that we may contact you. Thank you! Your participation is entirely voluntary. Nothing will happen to any services you receive if you decide not to participate. Your identity will be kept strictly confidential and your name will not be connected with anything you say in the focus group. Only a summary report of the issues discussed during the focus group will be shared in our final report. This research is funded by the Social Security Administration, which is part of the federal government. See also: Subscribe to Greater New England Chapter Publications Chapter Calendar at a Glance National Multiple Sclerosis Society, Greater New England Chapter 101A First Avenue, Suite 6 | Waltham, Mass. 02451-1115 tel: 1 800-344-4867 | fax: 1 781-890-2089 | MSnewengland.org

Friday, January 4, 2013

Federal Focus - January 2013

Happy New Year, MS Activists! Fiscal Cliff Averted, but Much Work for the 113th Congress After intense negotiations, Congress has passed and the President signed into law a bill that averts the so-called “fiscal cliff.” The fiscal cliff was a drastic convergence of increased taxes and reduced spending that could have propelled the country into another recession. Vice President Joe Biden and Senate Minority Leader Mitch McConnell (KY) led the final conversations and the deal includes compromises on both sides of the aisle. The package contains several tax provisions including an extension of the Bush-era tax rates for individuals making $400,000 and less in annual income and families making $450,000 and less, as well as a five-year extension of the American Opportunity Tax Credit, Child Tax Credit and Earned Income Tax Credit. The law also contains health and other provisions that impact the MS and disability communities. These include: Physician Reimbursement: Avoiding a scheduled 26.5% cut to Medicare physicians (through December 31, 2013); Therapy Caps: Extending a Medicare therapy cap exceptions process so that patients can continue to access needed outpatient physical, speech, and occupational therapy services (through December 31, 2013); CLASS Program Repealed: Repealing the Community Living Assistance Services and Supports (CLASS) Program, a voluntary long-term insurance program that would have provided a cash benefit to people who become functionally or cognitively impaired to help maintain community residence and independence; Sequestration Delay: Delaying for two months scheduled across-the-board cuts (the “sequester”) to defense and non-defense programs including medical research; and Limit on Itemized Deductions: Limiting itemized deductions for individuals making over $250,000 a year and families earning over $300,000 per year, but does not limit or cap the charitable deduction. The Society is pleased that the cut to Medicare physicians and the Medicare therapy exceptions process were extended. A supporter of the CLASS program and its goal of helping people with disabilities stay in their communities and be independent, we are disappointed that the program is not currently solvent and had to be repealed. The law fortunately sets up a bipartisan commission tasked with developing legislative long-term care alternatives and we look forward to finding workable solutions to our nation’s long-term care crisis. The 113th Congress was sworn in and commenced yesterday. With the across-the-board cuts only delayed for two months and the debt limit not increased, members will hit the ground running. Stay tuned for opportunities to weigh in with your members of Congress over the next several weeks. We will have to educate the new Congress about the importance of protecting medical research and programs like Medicaid and Social Security.

Wednesday, January 2, 2013

Register Now for the 2013 Employment Teleconference Series

Join us for the 2013 Employment Teleconference Series: Career Decisions and MS The National Capital, New York City-Southern New York and Greater Delaware Valley Chapters of the National MS Society are pleased to present a series of six teleconferences on a variety of topics related to employment and MS. Teleconferences will take place from 7 to 8 p.m. EST on alternate Wednesdays between January 16 and March 27, 2013. About the series A teleconference is an opportunity to learn new information by calling into a designated toll-free number to hear an interactive presentation. You can ask questions or just listen to the information. Best of all, you can do so from the comfort of your own home. Participate in all six teleconferences or just the ones that interest you. Please note that you will need to register for each teleconference individually. (1) Should I Work From Home or Start My Own Business? Wednesday, January 16 from 7 to 8 p.m. EST Trying to decide if working from home or starting your own business is for you? Experts in both of these areas will talk about what it takes to be a successful home-based employee or entrepreneur. The deadline to register for this call is January 9. Register online. (2) Is it Time? Deciding to Change Careers or Stop Working Wednesday, January 30 from 7 to 8 p.m. EST Working with MS is possible, but can be challenging at times. Is working or working in your field no longer an option? How do you know when it's time to stop or make a change? Learn from a counseling professional what to consider when having to make this important decision. The deadline to register for this call is January 23. Register online. (3) Deciding How to Plan Your Job Search. Employers Share How They Find Employees Wednesday, February 13 from 7 to 8 p.m. EST Hear from a panel of employers on what they really look for in a job candidate, where they find candidates and how they fill openings. The deadline to register is February 6. Register online. (4) Should I Work? Work from Home Options for People on Social Security Disability Wednesday, February 27 from 7 to 8 p.m. EST Are you on Social Security and want to work? Do you need to or prefer to work from home? Learn how working might impact your disability benefits and hear about work from home opportunities for people on Social Security. The deadline to register is February 20. Register online. (5) The Impact of Health Insurance on Career Decisions Wednesday, March 13 from 7 to 8 p.m. EST Health insurance considerations can impact your decision to change jobs or leave the workforce. Learn about legal protections and questions to ask to ensure you have the coverage you need. The deadline to register is March 6. Register online. (6) How to Talk About MS to Your Employer Wednesday, March 27 from 7 to 8 p.m. EST Once you decide to disclose there are still many unanswered questions. Hear from employers and disability advocates on how to talk with your employer about your MS. The deadline to register is March 20. Register online. How to register To register for one or more of the teleconferences in this series, please click on the link(s) provided or call the National MS Society at 1-800-344-4867 at least one week prior to the teleconference(s) in which you would like to participate. You will receive call-in instructions and an information packet via email approximately one week prior to each call for which you are registered. If you have any questions, please do not hesitate to contact me at Amber.stalker@nmss.org. Warm regards, Amber R Stalker, MEd Director, Community Programs See also: Teleconference Series Chapter Calendar at a Glance Subscribe to Chapter Publications

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About Me

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North Grafton, Massachusetts, United States
Well-educated, disabled at this point with Multiple Sclerosis. I am very glad that I was able to do the things that I have been able to do over the years. had to change the picture, this one's more realistic.