Category Archives: News / Research

My Interview at Multiple Sclerosis Central

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I’ve been off of the radar lately, and not due to lousy health but because of the TONS and TONS of reading, writing, and discussing I have to do for my online Abnormal Psychology class. It’s been very interesting but time-consuming. That said, I’m ready to sign up for my next class this fall: Personality Theory. I’m hoping to learn more about the ins and outs of introversion/extroversion and what makes us act like we do….why, Why, WHY? LOL

On the topic of MS: I am currently featured at Merely Me’s Multiple Sclerosis Central site as the latest MS patient profile. I’ve given some insight into my various symptoms, my long road to diagnosis, my philosophies for coping, and my “words of wisdom” to neurologists/medical staff. If you have a moment, please feel free to check it out.

Now onto a new article here, because I am COMPLETELY behind….

Posted in Blog, News / Research

MSAA: Multiple Sclerosis Association of America

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A great multiple sclerosis resource has been around since 1970: the Multiple Sclerosis Association of America (MSAA.) Headquartered in Cherry Hill, New Jersey, the association has various regional offices throughout the United States and its main functions are to inform, empower, and assist MS patients and their families/friends. The following are some of the MSAA’s main services:

Programs and Services:

This is a link to such services as a toll-free telephone helpline, reassurance calls, a lending library, information about support groups, events and classes, an MRI assistance fund, information about barrier-free housing, an equipment (including cooling devices) lending service, and program applications.

News Center:

Access the latest multiple sclerosis information here. Learn more about the MSAA, find out about current research, MS-related organizations, frequently asked questions (FAQ’s), and access the MSAA’s news archive.

MSAA Publications:

The Multiple Sclerosis Association of America has a quarterly, free publication: The Motivator. It also has various, free booklets and brochures that cover such topics as depression, complementary and alternative medicines, wellness tips, cooling devices, the MRI assistance program, and MSAA’s services and programs.

Life Lessons: MSAA’s Life Coaching Blog:

This is a fairly new component to the MSAA’s website. A group therapist and life coach provides life coaching sessions (via telephone) and she writes about helpful tips and tricks to live fully and realistically with multiple sclerosis.

Regional Offices:

Contact an MSAA regional branch near you.

Posted in MS and Assistive Devices, News / Research

Walk MS

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It’s April and the National Multiple Sclerosis Society’s Walk MS fundraising event is in full swing. There are many opportunities for walking participants to raise money and support MS research. You can walk as an individual or as part of a team (both as family/friends or as a corporate group.) There are also many volunteering opportunities available to help make the walk days run smoothly. Access these links for more information:

Find a Walk MS near you: This page helps walkers find local MS walks in their areas. There are regional and zip code breakdowns that make the process easy. There are links to register for walks, sponsor walkers, and also to donate.

Challenge Walk: Find one of the nine national challenge walks, which log 30-50 miles over a 2 to 3 day timeframe.

Send a Walk MS eCard: This page allows a participant to email family, friends, coworkers, and so on about registering to walk, joining teams, sponsoring him or her, and thanking sponsors after a walk.

My Participant Center (visit your chapter website and login): A place to email fundraising materials to sponsors, check fundraising progress, and communicate with other team members.

Team Up for More Fun: Find out how to create a team and be a Walk MS team captain. Tips and tools are included.

Volunteer: This is the route I’ve taken for the past three years. I help set up and man the registration tables, then welcome walkers back for the appreciation barbeque. Learn how you can volunteer at a walking event.

Posted in Fundraising Info, News / Research

Website that Focuses on MS Technology

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I recently received this email about a website that connects MS patients with technology solutions to better adapt to daily living. Check it out:

Hello Jen,

My name is Ellen Kampel – I work for Microsoft and am a person living with multiple sclerosis (MS). I am reaching out to you on behalf of a great program in which I’m involved: The MS Technology Collaborative. The Collaborative is a partnership between the National MS Society, Microsoft and Bayer HealthCare Pharmaceuticals, dedicated to connecting people living with MS to technologies that can help them overcome MS-related challenges and live better.

The goal of the Collaborative is to provide technology solutions for people living with MS, many of which are affordable or free. Our Web site, www.MyMSMyWay.com, offers an online interactive tool called “Snapshot” that prompts users to answer a series of questions, after which they receive a customized report with technology solutions specific to each person and his or her particular challenges. We also offer technology tips submitted by members of the MS community, a monthly column that I write with a leading accessible technology expert, and information on the types of technology available.

Lastly, I wanted to share with you a bit of a preview about our newest and most exciting initiative – we’re in the process of building a free online game that addresses the cognitive challenges of people living with MS. The game will provide cognitive exercises that target some of the main cognitive challenges faced by the MS community. It’s being developed in consultation with individuals living with MS as well as medical experts who specialize in researching and treating this condition.

With so many people finding strength and courage through your blog, I thought that both you and your readers might be interested in the resources available at MyMSMyWay.com.

I’d also like to invite you to be one of the first to preview our game this spring. Do you think that you’d be interested in reviewing the game prior to its official launch and providing your feedback? If so, please let me know. I’d love to have you involved in our efforts.

Thanks for your time, and I look forward to hearing from you soon.

Best,
Ellen Kampel

Posted in MS and Assistive Devices, News / Research

Facebook Application Lists MS Walk/Bike Events

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I recently received this email about a new Facebook application that helps readers find MS walking and biking events. It is for current Facebook users, although starting an account is very simple. Fellow MS bloggers as well as MS communities can be found on Facebook.

Jen –

My name is Brian Reid and – in the interest of full disclosure – I work with Serono on their MS LifeLines program. Last week, they launched a Facebook application that is designed to help people find National Multiple Sclerosis Society-sponsored walks and bike rides and connect with others who are also participating. There’s no commercial subtext here – the intent is to raise awareness.

The application is online here: http://apps.facebook.com/mschampions.

I know that you’re already involved in an event, and we want to make it as easy as possible for everyone who participates (or who wants to participate) to plug into the community, so anything you can do to share with your readers would be appreciated.

Thanks for the great blogging,

Brian Reid

Media Director | WeissComm Partners

P 703.402.3626 | Skype brianreid

“Healthcare Agency of the Year”

www.wcpglobal.com

Posted in Fundraising Info, News / Research

MS and Low-Dose Naltrexone (LDN)

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For the past several years there has been a bit of a cult following with a drug called LDN (low-dose naltrexone) . While writing at Suite101’s health site, I encountered several readers with MS who promoted the drug in comments sections, as well as a fellow health writer (with hyperthyroidism) who valued and wrote about its merits. There wasn’t much known about the drug then except that it wasn’t FDA-approved for multiple sclerosis patients and it wasn’t clear whether the drug could actually slow MS disease progress. Just recently I read an article from the National Multiple Sclerosis Society’s Momentum magazine with a current view about LDN. Here is what Dr. Allen C. Bowling, a neurologist and professor at the University of Colorado-Denver and Health Sciences Center, reports:

What is Low-Dose Naltrexone?

Dr. Bowling addresses the fact that LDN is getting a great deal of coverage on the internet, including various websites that are run by low-dose naltrexone organizations. Although LDN is reported to help patients with multiple sclerosis, it is considered a CAM or complementary and alternative medicine because it has not been extensively tested for effectiveness in patients with MS. Currently naltrexone is approved for opiate and alcohol addiction, with patients being treated with doses of roughly 50 milligrams/day. Patients who take LDN for MS use about 1.5 to 4.5 milligrams/daily, hence the name.

Naltrexone, which may increase endorphin productivity and increase the body’s sensitivity to it, could very well reduce pain and inflammation, as well as stabilize overall mood. It also may decrease the formation of free radicals (considered harmful) and thus protect nerve cells from injury.

LDN Studies, to Date

Not a great deal of low-dose naltrexone research has been done. Here are some recent studies and their results:

  • Two small, preliminary studies of LDN for EAE (experimental autoimmune encephalomyelitis which is an animal model of MS) found that LDN decreased nervous system inflammation, immune cell activation, and possible disease severity. These studies were presented at the annual meeting of the European Congress for Treatment and Research in MS (2008.)
  • A small clinical trial on humans with MS (reported at the same meeting this past year) was conducted at the University of California-San Francisco. 80 people were treated for 8 weeks with either LDN or a placebo. The LDN showed no effect on physical functioning, but it showed an improvement in some patients’ mental health and pain symptoms.
  • 40 primary-progressive MS patients in Italy were studied in 2008. LDN was administered for 6 months, although there was no placebo-treated control group for comparison. Patients noted an improvement in spasticity, but no effects on depression, fatigue, or overall quality of life. Some patients reported a worsening of pain. Only one patient showed a neurological worsening during the treatment.

What Does this Mean to MS Patients?

Dr. Bowling stresses that the preliminary studies still don’t show enough evidence that LDN effectively reduces multiple sclerosis inflammation/nerve attacks in humans and thereby slows MS’s progression in patients. The studies are a good start in the discovery of what low-dose naltrexone is capable of, although the studies on EAE were done on animals and not true MS patients, and the other studies were brief and the results were conflicting.

Questions Dr. Bowling—as well as other neurologists– still have:

  • Does LDN truly and consistently decrease the severity of MS symptoms?
  • Does LDN slow the progression of relapsing and/or progressive MS?
  • Is LDN safe to use on a long-term basis?
  • Does LDN interact with conventional MS medications?

In the meantime, low-dose naltrexone continues to be considered a complimentary and alternative medicine and is being further studied to determine its ability to slow disease progression (like other disease-modifying meds), its long-term safety, and its ability to effectively treat symptoms. At this point, many MS patients have been able to acquire it for “non-MS” use.

For further reference:

Bowling, Allen C, MD. “Low-Dose Naltrexone (LDN): The ‘411’ on LDN.” Momentum, the Magazine of the National Multiple Sclerosis Society. Spring 2009, pp 44 – 46.

Posted in MS Medications, News / Research

MS Awareness Week: March 2 – 8, 2009

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The National MS Society (in the United States) hosts an MS Awareness Week to raise consciousness about the disease. Many activities— already in motion but spotlighted during this time— are open to anyone who’d like to get involved. This year’s theme is MOVE IT:

Walk MS: the annual walking event that recruits thousands of participants who raise pledges for the Society. People participate as individuals, as family and friends groups, and as corporate groups.

Bike MS: this ongoing event recruits cyclists— both novices and Olympic-worthy athletes— for routes of varying difficulties. Again, pledges are raised and teams can be formed.

Volunteering: chapters need volunteers for the above-mentioned activities (I’ve volunteered several times for both and have enjoyed the camraderie and the new people I’ve met) as well as in-office support for local chapters.

Advocating: MS advocates are sought to push for government funds for MS research. Anyone can advocate.

Donating: donations for the MS Society are sought year-round.

Make Your Mark: write on the “MS Wall” and leave your personal note.

Post a Video to YouTube: make your own statement and post to the Society’s YouTube page.

****So much more: check out all the other ways to spread MS AWARENESS this week. And remember to be AWARE year-round.

Posted in Fundraising Info, News / Research

Skiers Raise Funds for MS: Birkebeiner Races

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I used to love to ski. I went a few times with my high school friend and her family, and also during our senior trip to New York State. Something about the fluid movements and the challenge of staying upright really thrilled me. Plus I enjoyed the snow. I remember feeling so proud when I advanced to the intermediate slopes (although I’d watch young whippersnappers — some looked like they were only four years old! —race past me with NO poles. Crazy.) I was happy and felt accomplished on the intermediate slopes considering I didn’t take up the sport until I was 15 years old. My high school buddy, on the other hand, was a pro on the advanced slopes because she had been downhill skiing since SHE was about four years old.

Now I look at cross-country skiing as maybe a new option. I’ve been off the downhill slopes for too long and my balance is sub-par, but I think the flat trails could offer some needed exercise and a way to improve my balance/stamina. When I recently read about an MS skiing fundraiser at my local NMSS website, I was intrigued. Here’s what’s happening in Wisconsin this week:

From February 19 – 21, the 36th annual American Birkebeiner cross-country races will be in full swing. Birkie Skiers for Cures, in collaboration with the National Multiple Sclerosis Society, have created a fundraiser similar to the NMSS’s biking and walking events, with participants raising pledges. There are four races including the 50K American Birkebeiner, the 54K Birkie Classic, the 23K Kortelopet, and the Johnson Bank Prince Haakon 8K. Participants raising a minimum of $2,500 will receive an invitation to meet and ski with Norwegian ski Olympian Bjorn Daehlie. Those raising $250 or more will be entered into a drawing to meet the skier. Of note: Daehlie’s mother suffers from multiple sclerosis and has been the source for his quest to find the cure.

****To learn more about this event, visit the American Berkebeiner website.

Posted in News / Research

Alemtuzumab Clinical Trials

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I recently received this email from a PR representative promoting the study of the drug Alemtuzumab for multiple sclerosis in global clinical trials. I have seen this pitch letter floating around at other websites, and I’m posting it here in case any readers are interested in participating:

Hi Jen,

My name is Brenna Fitzgerald and I’m writing to you from Fleishman-Hillard, a communications company, contracted to create awareness regarding two clinical research studies in multiple sclerosis. As your blog chronicles your journey with multiple sclerosis, I wanted to let you and your readers know about two global clinical research studies that are seeking adults with relapsing-remitting MS.

The Comparison of Alemtuzumab and Rebif® Efficacy in Multiple Sclerosis (CARE­MSSM) I and II studies are designed to determine the safety and effectiveness of the investigational drug alemtuzumab as compared to the FDA-approved therapy Rebif (interferon beta-1a), in adults with relapsing-remitting multiple sclerosis. The studies will look for differences between these drugs on the progression of disability and in the number of relapses (flare-ups) and brain lesions caused by MS. The studies also will compare the side effects of the drugs and monitor for risks during and after treatment.

Current therapies require frequent, long-term administration. When compared with no treatment, they have been shown to reduce the number of relapses, slow the formation of MS associated lesions in the brain, and impact progression of disability. A need still exists for more effective therapies to further slow the progression of disability.

Studies measuring investigational treatments against standards of care are advancing knowledge of these drugs on the disabling effects of MS, which may impact the patient’s quality of life. Every patient in the CARE-MS studies will receive active treatment; there is no placebo. Participation in the CARE-MS trials may offer participants the opportunity to help advance research in the treatment of MS while taking a role in their healthcare.

Alemtuzumab, Rebif, the annual dose of steroids, and study-required procedures are provided at no cost.

To be eligible to participate in the studies, volunteers must be between the ages of 18 and 50 (CARE-MS I) or 18 and 55 (CARE-MS II) and meet specific criteria, including having a diagnosis of RRMS and first experiencing MS symptoms within the last 5 years (CARE-MS I) or 10 years (CARE-MS II).

For more information about the studies, please call 1-503-432-4725 or toll-free
1-888-404–MS-CARE (United States only) or visit www.CARE-MS.com. There, you will find additional information about the studies and an online prescreener, which will allow people with RRMS to determine if they meet initial eligibility requirements.

If you find this information useful, I hope you will consider sharing it with your readers and posting 1-888-404–MS-CARE and a link to www.CARE-MS.com on your blog.

Best regards,

Brenna Fitzgerald

Account Executive

Fleishman-Hillard, Inc

855 Boylston St | Boston, MA 02116

Posted in News / Research

What is Tysabri?

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Tysabri, a disease-modifying medication indicated for the use of treating numerous autoimmune diseases including multiple sclerosis, is a lab-produced monoclonal antibody. This basically means the drug works to prevent an autoimmune attack where immune cells (for reasons unknown) fight their own body tissues. In the case of multiple sclerosis, this involves the immune system attacking the coverings of the nerves located in the brain and the spinal cord (the central nervous system.)

Tysabri, or its chemical name “natalizumab”, is indicated for use in MS patients who have not tolerated or had favorable results with the disease-modifying injectable drugs– Avonex, Betaseron, Copaxone, or Rebif— or for serious initial multiple sclerosis attacks where a stronger medication is desirable. Tysabri is believed to be about 70 – 75% effective in slowing multiple sclerosis attacks and resulting disability (the injectable drugs have a varying effectiveness of up to roughly 40%.)

Tysabri patients may develop side-effects from use of the drug, including body aches, fatigue, stomach pains, headaches, lowered immunity to certain infections, an allergic reaction upon administration, and other complications. A more serious side effect is the possible development of PML, or progressive multifocal leukoencephalopathy, a neurological virus that can be fatal. Because of this very serious risk, Tysabri has a structured system for intravenous administration throughout the United States, called the “Touch” prescribing program. It is given by infusion about once a month.

There have been three reported deaths from PML after the use of Tysabri. Two were reported during Phase III clinical trials (2005) where the two patients were taking other immunomodulating medications with the Tysabri. A recent death has been reported in the United States, after several cases of PML were acknowledged this year. Because of these deaths, Tysabri is considered a controversial medication, although thousands of patients worldwide have stabilized and even improved from its use.

****For more information about Tysabri (and its administration), see The National Multiple Sclerosis Society (US), Multiple Sclerosis Trust (UK), The Boston Business Journal (a financial perspective), and The Irish Examiner (Elan, the pharmaceutical company who co-owns the Tysabri patent with American company Biogen, is based in Ireland.)

Posted in MS Medications, News / Research
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