Nearly 75% of people living with MS depend on a neurologist for regular assessment and care of MS. Without proper compensation, however, it is expected that the number of neurologists who enter the MS field will considerably decrease. E-mail your Senators now and ask them to co-sponsor S. 597 to ensure adequate access to neurologists!
Senators Klobuchar (MN) and Collins (ME) have introduced a bipartisan bill to add neurology to the list of physicians eligible for the primary care incentive included in the Patient Protection and Affordable Care Act. The original provision was put in the Affordable Care Act to ensure that individuals in Medicare have appropriate access to primary care physicians, however, the bill did not list neurology as a specialty that could qualify. By excluding neurologists from eligibility for the bonus, it could cause fewer doctors to choose neurology as a specialty. Thus, it could have long-lasting ramifications for people living with MS, by threatening access to important specialized care.
Email your Senators today and urge them to ensure the proper care of people with MS and other neurologic disorders by cosponsoring S.597.
To keep future MS activism messages out of your junk folder, add the following address to your contacts or safe sender list: MSActionNetwork@nmss.org
Monday, March 21, 2011
Wednesday, March 16, 2011
Support MS Activists on Capitol Hill
Last Wednesday, March 9, hundreds of MS activists from across the country met with their federal legislators on Capitol Hill as part of the National MS Society's 20th 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. Click here to take action today and write your Members of Congress to echo our requests on Capitol Hill!
MS activists discussed three priority issues:
* Improved Access to Neurological Care: The Affordable Care Act provides a 10 percent bonus to Medicare physicians who specialize in family medicine, internal medicine, geriatric medicine and have allowed charges for evaluation and management services that account for at least 60 percent of their total allowed charges. Neurology is the only group of physicians who are responsible for coordinating overall patient care that are left out of the incentive and in 2011, MS activists seek to correct that inequity. With nearly 75% of people living with MS depending on a neurologist for regular care of their condition, inclusion of neurologists is vital.
* Adult Day Achievement Center Enhancement Act (H.R. 883/S. 495): MS activists urge support of this legislation that would sustain and grow Adult Day programs by establishing 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 (MS) and similar diseases.
* MS Research in the Congressionally Directed Medical Research Programs (CDMRP): MS activists have successfully advocated for a new federal funding avenue that thus far, has yielded approximately $13 million for MS research. MS activists request $15 million in appropriations for MS research in the CDMRP in Fiscal Year 2012.
Click here to email your Members today to help advance these three important issues!
To keep future MS activism messages out of your junk folder, add the following address to your contacts or safe sender list: MSActionNetwork@nmss.org
MS activists discussed three priority issues:
* Improved Access to Neurological Care: The Affordable Care Act provides a 10 percent bonus to Medicare physicians who specialize in family medicine, internal medicine, geriatric medicine and have allowed charges for evaluation and management services that account for at least 60 percent of their total allowed charges. Neurology is the only group of physicians who are responsible for coordinating overall patient care that are left out of the incentive and in 2011, MS activists seek to correct that inequity. With nearly 75% of people living with MS depending on a neurologist for regular care of their condition, inclusion of neurologists is vital.
* Adult Day Achievement Center Enhancement Act (H.R. 883/S. 495): MS activists urge support of this legislation that would sustain and grow Adult Day programs by establishing 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 (MS) and similar diseases.
* MS Research in the Congressionally Directed Medical Research Programs (CDMRP): MS activists have successfully advocated for a new federal funding avenue that thus far, has yielded approximately $13 million for MS research. MS activists request $15 million in appropriations for MS research in the CDMRP in Fiscal Year 2012.
Click here to email your Members today to help advance these three important issues!
To keep future MS activism messages out of your junk folder, add the following address to your contacts or safe sender list: MSActionNetwork@nmss.org
Friday, March 11, 2011
“Facing Multiple Sclerosis in Massachusetts”
As you may know the Greater New England Chapter has decided not to hold *MS Action Day at the State House in 2011. The chapter decided this year to take the opportunity to educate our newly elected senators and representatives and those re-elected about the impact of MS on individuals across the lifespan and the need for public policies that support independent living in the community. The chapter has invited all the legislators to a “Legislative Coffee Break” at the State House from 10:00 am to 11:00 am on Wednesday, March 16th in the House Members Lounge. The event is sponsored by Representative Ron Mariano and Senator Mark Montigny. Speakers who represent all the faces of MS will talk about the challenges and struggles that people face every day living with MS.
What can you do to help make this program successful? Please contact your senator and representative today or Monday, March 14th and urge them to attend this program on you behalf. We need your voice now, more than ever!
*The chapter is developing a tool kit about how to effectively meet with your senator and representative in their district office. More info to follow. The chapter plans to hold MS Action Day during the second year of legislative session in 2012.
Have a great weekend!
Thanks,
Sarah
Sarah MacIsaac, MSW, LCSW
Community Program Manager
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue Suite 6
Waltham MA 02451
sarah.macisaac@nmss.org
tel +1 800 344 4867
tel +1 781 693 5153
fax +1 781 890 2089
What can you do to help make this program successful? Please contact your senator and representative today or Monday, March 14th and urge them to attend this program on you behalf. We need your voice now, more than ever!
*The chapter is developing a tool kit about how to effectively meet with your senator and representative in their district office. More info to follow. The chapter plans to hold MS Action Day during the second year of legislative session in 2012.
Have a great weekend!
Thanks,
Sarah
Sarah MacIsaac, MSW, LCSW
Community Program Manager
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue Suite 6
Waltham MA 02451
sarah.macisaac@nmss.org
tel +1 800 344 4867
tel +1 781 693 5153
fax +1 781 890 2089
JOIN THE MOVEMENT
Dear Friend:
As you know, MS Awareness Week is March 14-20, 2011. The goal of MS Awareness Week is to raise public awareness of multiple sclerosis and the impact it has on individuals and families, and to introduce people to the National Multiple Sclerosis Society, to the ways in which the National MS Society helps people who are affected by MS, and how people can join the movement to create a world free of MS.
The 2011 theme for MS Awareness Week is: "MS=" or "What does MS mean to you?"
When people were asked "What does MS mean to you?", responses fell into the following categories:
* MS = unknown (don’t understand cure, cause, never the same, no one understands)
* MS = invisible (people don’t understand the invisible symptoms of MS)
* MS = unpredictability of disease/uncertainty of my future/uncertainty day to day
* MS = change (learning to adapt, have had to change how I live my life, how I do things, its changed me, the way I look at the world)
* MS = challenges (presents challenges in my life, a path not planned, limitations/new opportunities)
In each of the four states in the Greater New England Chapter (Maine, Massachusetts, New Hampshire, and Vermont) there will be a Flags of Hope display, with one orange flag representing each person who has multiple sclerosis in that state. In Maine, the flags will be displayed at the New England Rehabilitation Hospital of Portland on Monday, March 14. In Mass., there will be two installations, both on Saturday, March 12. One at RJ Kelly and Company, Mall Road in Burlington, Mass., and the other at Bernie & Phyl's Furniture, 901 Broadway (Rt. 1) in Saugus. In New Hampshire, the Flags of Hope will be displayed also at Bernie & Phyl's Furniture, 243 Daniel Webster Highway in Nashua. In Vermont, the location is to be determined. 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. Contact the local office to make arrangements to volunteer.
The following are a few suggestions on ways you can Join the Movement and raise awareness of MS!
* Visit www.Facebook.com/MSnewengland, and tell us what MS means to you!
* Donate your Facebook status line to MS Awareness Week
* Write a letter to your local newspaper and tell them what MS means to you. A template letter can be found on the MS Awareness Week page on MSnewengland.org.
* Be creative! Visit and download a variety of digital media items such as badges, Instant messaging icons, electronic banners and video public service announcements (PSAs)
* There are electronic wallpapers you can download for your computer. (Eric & Susan are from our Chapter!)
* Add an MS Awareness Week logo to your email signature!
* Create a video that tells us what MS means to you and post it on YouTube, then send a link to your video to NationalMSSocietyGNE@nmss.org.
* Wear orange to raise awareness. Orange is the Society's color! Need something new to wear, visit the Society Store.
* Be sure to check the Chapter's MS Awareness Week page for more details!
THANK YOU for helping to create a world free of multiple sclerosis!
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue
Waltham MA 02451-1115
As you know, MS Awareness Week is March 14-20, 2011. The goal of MS Awareness Week is to raise public awareness of multiple sclerosis and the impact it has on individuals and families, and to introduce people to the National Multiple Sclerosis Society, to the ways in which the National MS Society helps people who are affected by MS, and how people can join the movement to create a world free of MS.
The 2011 theme for MS Awareness Week is: "MS=" or "What does MS mean to you?"
When people were asked "What does MS mean to you?", responses fell into the following categories:
* MS = unknown (don’t understand cure, cause, never the same, no one understands)
* MS = invisible (people don’t understand the invisible symptoms of MS)
* MS = unpredictability of disease/uncertainty of my future/uncertainty day to day
* MS = change (learning to adapt, have had to change how I live my life, how I do things, its changed me, the way I look at the world)
* MS = challenges (presents challenges in my life, a path not planned, limitations/new opportunities)
In each of the four states in the Greater New England Chapter (Maine, Massachusetts, New Hampshire, and Vermont) there will be a Flags of Hope display, with one orange flag representing each person who has multiple sclerosis in that state. In Maine, the flags will be displayed at the New England Rehabilitation Hospital of Portland on Monday, March 14. In Mass., there will be two installations, both on Saturday, March 12. One at RJ Kelly and Company, Mall Road in Burlington, Mass., and the other at Bernie & Phyl's Furniture, 901 Broadway (Rt. 1) in Saugus. In New Hampshire, the Flags of Hope will be displayed also at Bernie & Phyl's Furniture, 243 Daniel Webster Highway in Nashua. In Vermont, the location is to be determined. 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. Contact the local office to make arrangements to volunteer.
The following are a few suggestions on ways you can Join the Movement and raise awareness of MS!
* Visit www.Facebook.com/MSnewengland, and tell us what MS means to you!
* Donate your Facebook status line to MS Awareness Week
* Write a letter to your local newspaper and tell them what MS means to you. A template letter can be found on the MS Awareness Week page on MSnewengland.org.
* Be creative! Visit and download a variety of digital media items such as badges, Instant messaging icons, electronic banners and video public service announcements (PSAs)
* There are electronic wallpapers you can download for your computer. (Eric & Susan are from our Chapter!)
* Add an MS Awareness Week logo to your email signature!
* Create a video that tells us what MS means to you and post it on YouTube, then send a link to your video to NationalMSSocietyGNE@nmss.org.
* Wear orange to raise awareness. Orange is the Society's color! Need something new to wear, visit the Society Store.
* Be sure to check the Chapter's MS Awareness Week page for more details!
THANK YOU for helping to create a world free of multiple sclerosis!
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue
Waltham MA 02451-1115
Thursday, March 10, 2011
Welcome to the Rocky Mountain MS Center
Summary: Investigators worldwide are recruiting 1350 people with MS to study the safety and effectiveness of glatiramer acetate (Teva Pharmaceutical Industries, Ltd.). The current approved dose for glatiramer acetate is 20 mg per day delivered subcutaneously (under the skin), and this study is investigating the effectiveness of a higher dose, 40 mg, given less frequently (three times a week). The one-year study is funded by Teva Pharmaceutical Industries, Ltd., and is also called the GALA study.
Rationale: Glatiramer acetate is a synthetic protein that simulates myelin basic protein, a component of the myelin that insulates nerve fibers in the brain and spinal cord. This therapy seems to block myelin-damaging T-cells through a mechanism that is not completely understood. Glatiramer acetate is approved by the U.S. Food and Drug Administration to reduce the frequency of relapses in patients with relapsing-remitting MS and for use in individuals who have experienced a first clinical episode (clinically-isolated syndrome) and have MRI features that are consistent with MS.
Eligibility and details: Participants should be 18 to 55 years of age with a confirmed diagnosis of relapsing-remitting MS. Participants must be in a relapse-free, stable neurological condition for a minimum of 30 days, but have experienced at least one documented relapse in the past 12 months, two documented relapses in the past 24 months, or one documented relapse between 12 and 24 months with disease activity on MRI. Further details on enrollment criteria are available from the contact below.
Participants will be randomly assigned to receive either glatiramer acetate 40 mg or inactive placebo three times a week subcutaneously for 12 months. The primary endpoint being measured is the effectiveness in reducing the total number of relapses, and secondary endpoints being measured are new disease activity on MRI, cumulative disease activity on MRI, and brain tissue volume loss. Other endpoints under study include quality of life.
Contact: To learn more about the enrollment criteria for this study, and to find out if you are eligible to participate, please email UStevatrials@teva.co.il.
Sites are going to be recruiting in the following U.S. cities:
Akron, OH
Aurora, CO
Boulder, CO
Centennial, CO
Columbus, OH
Dayton, OH
Detroit, MI
Fort Collins, CO
Fullerton, CA
Gilbert, AZ
Kirkland, WA
La Jolla, CA
Lenexa, KS
Lexington, KY
Lubbock, TX
Miami, FL
Naples, FL
Nashville, TN
Northbrook, IL
Oklahoma City, OK
Phoenix, AZ
Pompano Beach, FL
Ponte Verde, FL
Richmond, VA
Roanoke, VA
Round Rock, TX
Salt Lake City, UT
San Antonio, TX
Sarasota, FL
Shreveport, LA
Tampa, FL
Uniontown, OH
Vero Beach, FL
Vienna, VA
Click to download this as a PDF
Rocky Mountain Multiple Sclerosis Center
8845 Wagner St. | Westminster, CO 80031
Rationale: Glatiramer acetate is a synthetic protein that simulates myelin basic protein, a component of the myelin that insulates nerve fibers in the brain and spinal cord. This therapy seems to block myelin-damaging T-cells through a mechanism that is not completely understood. Glatiramer acetate is approved by the U.S. Food and Drug Administration to reduce the frequency of relapses in patients with relapsing-remitting MS and for use in individuals who have experienced a first clinical episode (clinically-isolated syndrome) and have MRI features that are consistent with MS.
Eligibility and details: Participants should be 18 to 55 years of age with a confirmed diagnosis of relapsing-remitting MS. Participants must be in a relapse-free, stable neurological condition for a minimum of 30 days, but have experienced at least one documented relapse in the past 12 months, two documented relapses in the past 24 months, or one documented relapse between 12 and 24 months with disease activity on MRI. Further details on enrollment criteria are available from the contact below.
Participants will be randomly assigned to receive either glatiramer acetate 40 mg or inactive placebo three times a week subcutaneously for 12 months. The primary endpoint being measured is the effectiveness in reducing the total number of relapses, and secondary endpoints being measured are new disease activity on MRI, cumulative disease activity on MRI, and brain tissue volume loss. Other endpoints under study include quality of life.
Contact: To learn more about the enrollment criteria for this study, and to find out if you are eligible to participate, please email UStevatrials@teva.co.il.
Sites are going to be recruiting in the following U.S. cities:
Akron, OH
Aurora, CO
Boulder, CO
Centennial, CO
Columbus, OH
Dayton, OH
Detroit, MI
Fort Collins, CO
Fullerton, CA
Gilbert, AZ
Kirkland, WA
La Jolla, CA
Lenexa, KS
Lexington, KY
Lubbock, TX
Miami, FL
Naples, FL
Nashville, TN
Northbrook, IL
Oklahoma City, OK
Phoenix, AZ
Pompano Beach, FL
Ponte Verde, FL
Richmond, VA
Roanoke, VA
Round Rock, TX
Salt Lake City, UT
San Antonio, TX
Sarasota, FL
Shreveport, LA
Tampa, FL
Uniontown, OH
Vero Beach, FL
Vienna, VA
Click to download this as a PDF
Rocky Mountain Multiple Sclerosis Center
8845 Wagner St. | Westminster, CO 80031
My Life, My MS: The African-American Experience with MS
JOIN THE MOVEMENT
My Life, My MS: The African-American Experience with MS
Date: Saturday, May 14, 2011
Time: 10:00 - 2:00 pm
Location: William J. Devine/Franklin Park Golf Course
Dorchester, MA
Pre-registration is REQUIRED. This program is FREE and includes continental breakfast and lunch.
Explore how MS affects the African-American community through presentations and round table discussions. Meet other African-Americans with MS and empower yourself to live well with MS everyday.
Program Agenda:
* What Does MS Mean for Me? A look at the African-American MS population.
Speaker: Guy J. Buckle, MD. MS Neurologist at the Partners MS Center, Brookline
* Practical Tips & Handy Hints for Living with MS
Speaker: Nancy Lowenstein, MS OTR, BCSN. Occupational Therapist, Mount Auburn MS Center, Cambridge
* Roundtable group discussions — learn from others and mingle with your peers.
For more information and to register, click here
Questions? Please contact Sarah MacIsaac at 800-344-4867 or sarah.macisaac@nmss.org.
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
My Life, My MS: The African-American Experience with MS
Date: Saturday, May 14, 2011
Time: 10:00 - 2:00 pm
Location: William J. Devine/Franklin Park Golf Course
Dorchester, MA
Pre-registration is REQUIRED. This program is FREE and includes continental breakfast and lunch.
Explore how MS affects the African-American community through presentations and round table discussions. Meet other African-Americans with MS and empower yourself to live well with MS everyday.
Program Agenda:
* What Does MS Mean for Me? A look at the African-American MS population.
Speaker: Guy J. Buckle, MD. MS Neurologist at the Partners MS Center, Brookline
* Practical Tips & Handy Hints for Living with MS
Speaker: Nancy Lowenstein, MS OTR, BCSN. Occupational Therapist, Mount Auburn MS Center, Cambridge
* Roundtable group discussions — learn from others and mingle with your peers.
For more information and to register, click here
Questions? Please contact Sarah MacIsaac at 800-344-4867 or sarah.macisaac@nmss.org.
National Multiple Sclerosis Society
Greater New England Chapter
101A First Avenue, Suite 6
Waltham, MA 02451-1115
tel: 1 800-344-4867
fax: 1 781-890-2089
MSnewengland.org
Wednesday, March 9, 2011
MSConnection Spring 2011
MSConnection
PDF
Subscribe
Archives
A publication of the National Multiple Sclerosis Society,
Greater New England Chapter,
101A First Avenue, Suite 6
Waltham, MA 02451-1115
1-800-344-4867
www.msnewengland.org/
Chairman
Robert E. Shapiro
President & CEO
Arlyn A. White
MSConnection Editor
Steven R. Sookikian
Publications Specialist
Wendy Golden
The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned.
Information provided by the Society is based upon professional advice, published, experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician.
We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS.
©2011 National MS Society Greater New England Chapter
Table of Contents — Spring 2011 Issue
Susan Cohn-Child
Susan Cohn-Child was one of several local chapter members photographed to help promote MS Awareness Week
Features
* Multiple Sclerosis Awareness Week 2011
* Peer Support Volunteer Training
* Northeast Chapters Collaborate on Growing the MS Challenge Walk Cape Cod
News
* From the President
* May 25 Is World MS Day
* Society’s Chief Research Officer Named
* Visions of Technological Equality
* The North American Education Program
* New MS Learn Onlines
Newly Diagnosed
* Connect With an MSFriend
Programs
* The First Steps to Smart Money Management
* Free Tax Preparation Services
* Coffee and Conversation
* Home LINKS
* Training the Trainers
Living with MS
* The Cane Mutiny
* How to Get Started With SSDI
* Living with MS
Research
* Research Next Steps
* The World of MS Research
* Research Updates
* Resources to Find Clinical Trials
Advocacy
* Federal Updates
* State Updates
o Maine
o Massachusetts
o New Hampshire
o Vermont
Volunteers
* Passionate People = Productivity
Fundraising
* Shining Stars Awards
* Create a Fundraiser to Remember
* Walk with Us This Spring 2011
* Ride with Us in 2011
* MS Journey of Hope
* Accept the Challenge
* Marathon Strides Against MS
* MS Plane Pull
* MilesStones 2011
* Women on the Move Luncheon
Calendar of Events - see current calendar
Classified Ads - see current listings
Programs Catalog - see upcoming programs list
Subscribe
Archives
A publication of the National Multiple Sclerosis Society,
Greater New England Chapter,
101A First Avenue, Suite 6
Waltham, MA 02451-1115
1-800-344-4867
www.msnewengland.org/
Chairman
Robert E. Shapiro
President & CEO
Arlyn A. White
MSConnection Editor
Steven R. Sookikian
Publications Specialist
Wendy Golden
The National Multiple Sclerosis Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The National Multiple Sclerosis Society assumes no liability for the use of contents of any product or service mentioned.
Information provided by the Society is based upon professional advice, published, experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician.
We mobilize people and resources to drive research for a cure and to address the challenges of everyone affected by MS.
©2011 National MS Society Greater New England Chapter
Table of Contents — Spring 2011 Issue
Susan Cohn-Child
Susan Cohn-Child was one of several local chapter members photographed to help promote MS Awareness Week
Features
* Multiple Sclerosis Awareness Week 2011
* Peer Support Volunteer Training
* Northeast Chapters Collaborate on Growing the MS Challenge Walk Cape Cod
News
* From the President
* May 25 Is World MS Day
* Society’s Chief Research Officer Named
* Visions of Technological Equality
* The North American Education Program
* New MS Learn Onlines
Newly Diagnosed
* Connect With an MSFriend
Programs
* The First Steps to Smart Money Management
* Free Tax Preparation Services
* Coffee and Conversation
* Home LINKS
* Training the Trainers
Living with MS
* The Cane Mutiny
* How to Get Started With SSDI
* Living with MS
Research
* Research Next Steps
* The World of MS Research
* Research Updates
* Resources to Find Clinical Trials
Advocacy
* Federal Updates
* State Updates
o Maine
o Massachusetts
o New Hampshire
o Vermont
Volunteers
* Passionate People = Productivity
Fundraising
* Shining Stars Awards
* Create a Fundraiser to Remember
* Walk with Us This Spring 2011
* Ride with Us in 2011
* MS Journey of Hope
* Accept the Challenge
* Marathon Strides Against MS
* MS Plane Pull
* MilesStones 2011
* Women on the Move Luncheon
Calendar of Events - see current calendar
Classified Ads - see current listings
Programs Catalog - see upcoming programs list
Subscribe to:
Posts (Atom)
About Me
- Steve
- 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.