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.

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.

About Me

My photo
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.