Meeting of MS Outcome Assessments Consortium and FDA Clears Pathway for New Tool for Clinical Trials in MS, Particularly Progressive Forms
The National MS Society-funded MS Outcome Assessments Consortium (MSOAC) held its first annual meeting with the U.S. Food and Drug Administration on April 1-2 to discuss steps needed to “qualify” a new measure of MS disability that will be recognized by the FDA and the European Medicines Agency to speed new therapies for MS, particularly progressive forms of the disease. This consortium of industry, academia, patient representatives, regulatory and other government agencies, the National MS Society, and the Critical Path Institute agreed to next steps for collecting, standardizing and analyzing data from clinical trials of MS therapies and other related research to develop a new “clinician-reported outcome measure.”
There is a critical need for more sensitive and accurate ways to detect the benefit of potential treatments that slow or reverse worsening disability in people with MS. There has been some progress in developing improved imaging tools as windows to MS nervous tissue damage, but progress in developing a clinical outcome measure that can accurately track a person’s clinical condition has been slow.
Chapter volunteers and staff gathered for the annual Maine, New Hampshire, and Vermont State House visits that coincided with MS Awareness Week. The MS information tables were well attended and many new connections were made with legislators of influence, including those with personal connections to MS. Newly elected state legislators with MS were identified in New Hampshire and Maine. Information on each state’s legislative priorities were distributed.
Vermont: The House issued a resolution designating MS Awareness Week, and staff and volunteers were recognized on the House floor. Governor Shumlin visited the MS information tables for the second year.
New Hampshire: The event was sponsored by Representative Dick Barry. The chapter partnered with the Governor’s Commission on Disability.
Maine: The event was sponsored by Representative Paul Bennett and Senator Edward Youngblood. Staff from U.S. Senators King and Collins offices met with chapter staff and volunteers. A joint resolution designating MS Awareness Week was signed by every member of the legislature. Chapter Board member Gail Kelly was recognized through a resolution read on the senate floor on behalf of her recent staffer award presented by the National MS Society.
MS NEXT STEP® is intended for people at the time of diagnosis. This program includes a booklet and DVD (closed captioning in English and Spanish, and print transcripts are also offered). You’ll learn what MS is, including possible causes, how it is treated, and some of the new challenges a person with MS may face. There is guidance on where to go for more information and a description of what the Society offers.
If your MS is newly diagnosed and you want to receive a copy of MS Next Step®, contact us at 800-344-4867 or firstname.lastname@example.org.
March 11-17, 2013
The goal of MS Awareness Week (MSAW) is to increase awareness about the disease and about the programs and services of the National MS Society.
Following are just a few of the activities in which the Society and its members engaged.
Flags of Hope: One orange flag is planted to represent each individual living with MS. We planted 1,600 flags at University of Vermont, Burlington; 3,000 flags at HealthSouth New England Rehab Hospital of Portland, Maine; and 11,300 flags at Bernie & Phyl’s, Saugus, Mass.
In-store MS Awareness Kits and banners were displayed at seven Bernie & Phyl’s furniture stores in Massachusetts and New Hampshire.
Several local cable access stations aired interviews and Society-related videos before, during, and after MSAW: Billerica Public Access TV;Self-help group leader Diana Towle, Athol-Orange Community Television, Channel 13; Nashua, NH Community TV, Manchester; NH Pubic access TV; and Provincetown, MA Public TV, “Bridging the Gap.”
There were radio interviews on WNTK of NH and ZONE Radio of Bangor, ME.
Social Media: Msconnection.org encouraged people to log on to the site and create their own MSAW Connection banner. There were many updates on our Facebook page encouraging people to connect, donate their status line, or join a walk, bike, or other fundraising event.
We had our first ever “Ask the MS Expert” Twitter chat with Dr. Ellen Lathi of the MS Center at St. Elizabeth’s Medical Center. Dr. Lathi answered more than 10 questions in one hour.
Over 10,000 Action Bookmarks were distributed at over 30 libraries across the chapter and Bernie & Phyl’s furniture stores. These bookmarks listed seven days of action individuals could do.
On Church Street, Burlington, Vermont, we had an Orange MS Ribbon campaign to heighten awareness of MS.
There were MSAW informal socials held at local restaurants to encourage people to connect, including Gritty McDuff’s in Portland, ME and Ake’s Place in Burlington, VT.
More than ten National MS Society information table displays were featured at libraries and banks.
Publications about Cognition and MS
Facing the Cognitive Challenges of Multiple Sclerosis (2006).Gingold, J. “This is a courageous and compelling personal account of one man’s anguishing struggle with this aspect of the disease. It was written for the silent majority of MS patients who are privately dealing with MS cognitive symptoms and potential disabilities.
Multiple Sclerosis: Understanding the Cognitive Challenges (2006). LaRocca, N. & Kalb, R. This book provides in-depth information about cognitive dysfunction as well as hands-on strategies for living and coping with this symptom.
Annual Meeting of Members and Research Update: “A Shared Promise”
Saturday, October 26, 2013
All sites include a resourse EXPO.
- Maine – Doubletree, Portland
- Massachusetts – Best Western, Marlborough
- New Hampshire – Church Landing, Meredith
- Vermont – Hilton, Burlington
By Walt Huffman
Having lived with my best friend and wife for 46 years, 20+ years her having been diagnosed with MS has taught me a few things. These are about love, staying the course, patience and the realization that MS does not preclude any other diseases, illnesses or conditions of growing older.
After the initial diagnosis of MS, which was a shock to our system to say the least, and with help and support of a very capable and supportive physician we came to recognize the nature and projected course of the disease. As partner and husband it was my long-time thought that “If the MS is managed all will be well with my wife.” I lived with that expectation through many forms of treatment and disciplines; through severe exacerbations and limitations of movement and every day activities of my spouse. Due to the nature of Charlene’s specific MS behavior she always seemed to get better and return, albeit not fully, to her prior abilities.
This, to me, seemed almost like a “trick.” Was she getting better? Was her disease going away or being diminished? I made myself believe that on many occasions even though I really knew better. Meanwhile time marched on and senior citizen status became part of our daily life. Also a shock to the system.
What now became realization as symptoms of that new senior health status was that all those minor, and major, conditions of growing older announced their presence. Aches and pains not felt before, muscles not cooperating as they had in the past, memory not being as sharp as in previous times and more trips to the doctors all became the new reality for both us, husband and wife. Frequently now the question has become: “Is this ache, pain or discomfort a part of MS or is it one more condition of aging?” Certainly food for thought during those sleepless hours after midnight.
As long-time companion and husband I can only come to one conclusion: MS will be a part of our lives until we depart this earth and so will the increase of our senior citizen status. We recognize this as we watch our children grow into loving and responsible adults and parents and our grandchildren gaining in age and wisdom. These children have grown up with MS in their lives and are not fearful of it. As young people they have a level of acceptance of things as they are and love you, no matter what. That has been the highlight of our life, not the reality of MS.
Acceptance, making the most of what we are given and enjoying the presence of those we love are the focus of our daily activities. Living in negativity, in distress and waiting for the next disaster to strike will not be beneficial in any way. A dosage of faith in a god of one’s choice has also been of benefit.
Yes, getting older and having MS, although not enjoyable at times, is do-able. It has to be.
Thank you to all who have assisted us over the years, our children and grandchildren and the entire extended family as well as the numerous medical staffs and personalities. May He bless all of you.
Our chapter had a very compelling and highly qualified group of scholarship applicants, and with the help of our review committee, 16 students were selected to receive 2013 Scholarship Awards. In addition to demonstrating financial need, these students are especially deserving of recognition due to their impressive academic records, sincere and well-written personal essays, devotion to their families, and dedication to education.
We are also thrilled that three students from our chapter have been selected as National Top Scholars! Only 17 Top Scholars are selected nationwide. These individuals stand out as being truly exceptional, and we are so very proud of this additional recognition which qualifies them to re-apply for their scholarship each of the next three years. Those top scholars are: Jason Carrier of Wakefield, MA; Ryan Herman of Charlestown, NH; and Peter Julian of Dennis, MA.
Congratulations to all of our scholarship recipients! View names and photos of the recipients.
- Any person with MS who is initiating a new exercise or recreation program should consult with his or her physician before starting.
- Find out about location accessibility.
- Reimbursement is open to individuals with MS as long as funds are available
- Reimbursement forms can be accessed online or by calling the Chapter at 800-344-4867, opt 2.
How does this work?
Go to MSnewengland.org > Programs & Services > In Your Community for Accessible Recreation. Contact the organizations directly to inquire about adaptive recreation programs offered in your community. Financial assistance opportunities may also be available directly through the organizations. Bring the reimbursement form with you for the provider to sign.
Sent completed reimbursement form to the Chapter.
- For single session programs: Participants must participate in the full program.
- For multi-date programs: Participants must participate in at least 65% of the total program dates (i.e. 2 of 3 dates, 4 of 6 dates, 7 of 10 dates).
Do you know of additional organizations that might be interested in joining our referral network? Contact Shanna McCabe at 800-344-4867, option 2 or email@example.com.
|MSConnection: a quarterly newsletter containing news and information for people with MS and their families and friends. Topics include local programs and resources, advocacy and public policy, advances in research, volunteer positions, fundraising events, and giving opportunities.|
|Research Updates: monthly email bulletins about MS research progress from around the world|
|News Flash: weekly update with what's new on the Greater New England Chapter's web site|
|Action Alerts: Join the MS Action Network, a powerful grass-roots network of individuals with MS, their families and friends, as well as health professionals, fundraisers and other concerned parties who contact their elected officials to urge their support on a federal or state issue.|
|MS Challenge Walk Blog: stories, interviews, advice, and events about the upcoming MS Challenge Walk, written by walkers, crew, and NMSS employees|
|Social Networking: Also keep up to date through the Greater New England Chapter's social media sites|
A Facebook group for parents of a child or teen with MS. A place to go with questions and concerns and a place to find other parents who understand. This group is a peer-led group available to families nationwide.
To join, visit: facebook.com/groups/PMSalliance/
What if everyone who cares about MS could join together in one place?
Share what you know at www.MSConnection.org.
Make meaningful connections when, where and how you want, with easy access to the best content and resources the MS community can bring you. Share information about the topics that are most important to you, connect with people, and have expert MS information and opinions right at your fingertips.
CONNECT to create change:
- Be an MS Activist. Connect with other Activists.
CONNECT to get involved:
- Find an MS Walk, share fundraising ideas.
CONNECT to ask questions:
- Learn more about MS from an MS Navigator.
CONNECT to be heard:
- Participate in discussion groups and blogs.
Share what you know.
CONNECT to give and receive support:
- Find Self-Help Groups near you.
- Join the “Online Peer Connections Program. ”
- Call “MSFriends.”
- MSFriends is a telephone support program: call toll free 866-673-7436.
- The Online Peer Connections Program has a telephone component for individuals with limited computer access: 303-698-6100 ext. 15169.