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, 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

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.