Category Archives: News / Research

The Wahls Protocol Review

I recently finished The Wahls Protocol, a diet and lifestyle book for treating autoimmune conditions. The author, Dr. Terry Wahls, was able to go from a state of progressive multiple sclerosis to a state of significant remission (enabling her to resume physical activity and bicycle many miles). I definitely appreciate that she is a medical doctor (M.D.) and that she embraces alternative approaches to treating disease.


The book presents variations of a “Wahls” diet, giving readers three levels of commitment. The diet has some of the elements of a Paleo lifestyle, including reducing carbohydrates and increasing fruit/vegetable consumption, discarding dairy, discarding gluten, and increasing organic meats and wild-raised fish. But this is only touching the surface: there are definite differences at each level of the diet. And there are also lifestyle suggestions such as proper exercise, detoxification, stress management, and vitamin supplements.


I really appreciated this book for a host of reasons: I like that the author is a doctor of medicine but also a doctor embracing alternative remedies, there are three levels of diet alterations to chose from, there are supplementary lifestyle alterations, and there are scientific explanations for why these changes are good. I do feel that I might incorporate some of the basic diet changes into my own regimen: getting more greens/veggies, cutting down on dairy and gluten, and increasing organic meats/wild fish.


I definitely think this book is worth a read, whether you have an autoimmune condition or you just want to become more healthy in general.

Harry Potter Author Helps MS Cause

I found the following USA Today news story on Facebook this morning. I didn’t realize the famed author of the Harry Potter series had a mother who was affected by multiple sclerosis. Apparently J.K. Rowling’s own mother died from complications related to MS when Rowling was young, and it has shaped the writer’s own understanding of illness, loss, and helping others. Having been catapulted to fame and fortune with her novels, Rowling has recently donated a large sum, $15.4 million, to the University of Edinburgh (Scotland) to create a research center for multiple sclerosis, Alzheimer’s disease, Parkinson’s disease, and other neurodegenerative illnesses.

Joan’s Next MS Chat: This Friday, August 13th

Delaware Area MS Online Chat
Friday 13 August, 7:00 – 9:00 pm, EST
Topic: Emergency Preparedness
Open conversation 7:00 – 8:00 pm
Topic begins at 8:00 pm

On Friday the 13th, let’s discuss what to do when really bad weather strikes. Are you prepared for a flood, hurricane, or heat wave? Can you manage if no one can get to you for several days? Let’s discuss ideas for being ready for the unpredictability of our situations when the weather gets nasty.

I’ll share information from a Delaware Emergency Preparedness Forum that I’m attending Thursday. This will be hosted by the University of Delaware’s Center for Disabilities Studies and is part of Delaware’s Workgroup on Emergency Preparedness for Individuals with Non-Typical Functional Needs.

If you are uncomfortable typing, you are still welcome to come and watch the conversation. Chat is open to everyone and you don’t have to be from the Delaware area to attend. To join, visit A Short in the Cord and click on the coffee cup or “Enter My Chat Room” in the upper right of the page.

Hope to see you in the room!


News About Oral Fingolimod

I’m currently enjoying a summer respite from some of my freelance work: has taken a much-needed hiatus for the next few weeks and I’m relishing NOT writing or talking about multiple sclerosis. However, I leave an article below for anyone who peruses this page. It’s an update about the process for oral fingolimod getting FDA approval as the first oral disease-modifying med in the United States. Although I don’t think this drug might be appropriate for me (given some of its side-effects), I am awaiting one of the other oral meds soon to follow. Crossing fingers that some of these oral medications will replace the invasive injections/infusions that so many of us must tolerate.

Back to the beautiful weather here: today’s 80 degrees with little humidity. Might hit up the beach for the remainder of the afternoon… : )

UPDATE: FDA Panel Recommends Approval of Oral Fingolimod for Relapsing MS — If agency follows advice, it would become first oral disease-modifying therapy for MS

Updated June 14, 2010

A U.S. Food and Drug Administration advisory committee today recommended that the agency approve marketing of fingolimod capsules (formerly called Gilenia, Novartis International AG) for the treatment of relapsing multiple sclerosis. If approved, fingolimod would be the first oral disease-modifying therapy for the treatment of MS. While the FDA is not required to follow the recommendations of its advisory committees, it usually does. According to Novartis, the agency is expected to make a final decision about whether to approve the drug in September 2010.

During an all-day meeting held June 10, 2010, the FDA advisory committee reviewed data about the effectiveness and safety of fingolimod, as well as a proposed plan designed to monitor and mitigate risks – called Risk Evaluation Mitigation Strategies (REMS) that would likely be mandated to monitor safety if the agent is approved. The committee also heard public testimony from individuals and patient advocacy groups, including the National MS Society, which testified to the unmet need for more therapies for people with MS.

Among its discussions, the advisory committee recommended that fingolimod be approved at the dose (0.5 mg once daily) recommended by Novartis and that:
• Fingolimod demonstrated substantial evidence of effectiveness for the treatment of relapsing MS to reduce the frequency of clinical relapses and to delay the accumulation of physical disability;
• the safety data currently known justify the drug’s approval, and the FDA should require a post-marketing study that would proactively gather information about adverse events and longer-term safety, the effects on a broader range of people than were included in the trials, and possible complications of taking other medications including steroids along with fingolimod;
• patients should be monitored during the first dose for possible lowering of heart rate and other potential heart effects, and that some assessments for potential adverse events related to eye (especially macular edema) and lung function be required, to an extent to be determined by the FDA;
• the FDA should consider requiring a study to evaluate whether a lower dose would be as effective as the recommended dose, with fewer adverse events;
• this therapy should be approved as a first-line therapy, meaning that patients would be eligible to take fingolimod without having to try an alternative therapy first.

Click here to read the remainder of this article

MS News: May 2010

Here are a few interesting MS bits for May:

Joan’s Online MS Chat
Friday 14 May, 7:00 – 9:00 pm
Energy Conservation and MS (suggested topic)

How do you manage your energy? Can you share any tips? Have you received guidance from occupational therapists who have helped you to conserve energy? I will share changes that have helped me, and will pass along information from MSAA’s Energy Conservation and MS webcast that is scheduled for May 13.

Of course, we WILL chat about birds. The chat topics are just guidelines, so feel free to bring your questions or topics to discuss. To attend, just CLICK HERE and follow the directions. Newcomers are always welcome and you don’t have to live in the Delaware area to join.

  • If you are uncomfortable typing, you are still welcome to come and watch the conversation.
  • If you have trouble seeing, you can increase the font size in the chat room by going to the top menu and selecting Options/Increase Font. Each time you select that option, it increases the font by one point.

Hope to see you in the room!


First oral disease modifier goes to FDA review panel

The first oral disease-modifying MS drug fingolimod (trade name Gilenia) will be coming up against the U.S. Food and Drug Administration’s advisory panel for recommendation. The date is set for June 10th and if it is approved, the drug could be marketed to patients by year’s end.  For more information about Gilenia’s benefits and risks, visit the National Multiple Sclerosis Society’s website.

MS LifeLines® announces special collaboration with Redbook magazine on Who’s Your LifeLine? program

MS LifeLines® is excited to announce that the Who’s Your LifeLine? program is collaborating with Redbook magazine to feature an upcoming LifeLine Spotlight in the October print issue.

Who’s Your LifeLine? is an online recognition program for people in the multiple sclerosis (MS) community, to recognize others who have made positive differences in their lives.  Maybe you were recently inspired by someone at a local MS event, or you find inspiration every day from someone close to you impacted by MS.  Now you can nominate your LifeLine and have a chance to be featured in Redbook magazine. Nominations received between now and June 24th will be reviewed for the October issue.

Everyone in the MS community is encouraged to nominate the person or people who most inspire them.  Each submission will be reviewed by a distinguished panel, and selected stories will be featured as a Who’s Your LifeLine? spotlight on  Don’t wait – nominate your “lifeline” today!

For detailed program guidelines, visit

***MS LifeLines is an educational support service for people living with MS and their families.  The program is sponsored by EMD Serono, Inc. and Pfizer Inc.

MS reaches over $100 in ad revenue AGAIN and procedes will be donated to the National MS Society’s scholarship fund

It’s great to be able to donate again to the scholarship program, and so the fundraising thermometer will again climb until the next $100 is reached. Thanks to all who support the site!

NMSS Walk / Bike Events and Current Survey

Some of the current MS fundraisers sponsored by the National MS Society (U.S.) include the Walk MS event and the Bike MS event, which are both coming into full swing. Both raise many thousands of dollars towards MS Society programs and MS research. For the past several years I’ve volunteered at both of the events: I’m not much of a fundraiser but I definitely can donate my time to help the local events run smoothly. To find out about donating, fundraising, or volunteering for either of these national events visit:

There is also a current survey in which the NMSS asks for MS writers’ / bloggers’ input about online communications and information. If you are an online writer, feel free to have your say:

MS Awareness Week: March 8 – 14, 2010

It’s multiple sclerosis awareness week again and time to spread knowledge and news about this life-altering condition. Living with it can range from being a small nuisance to being a great daily challenge. No two cases are alike and no one patient presents the entire scope of the disease. Those looking in may assume that a mild case represents the case for everyone, or that a severe case– such as Annette Funicello’s— is the norm. Not so. We are all different in terms of physical symptoms, although we are all united in our general feelings, fears, hopes, and knowledge about multiple sclerosis. Please take the time this week to become aware of what multiple sclerosis means and how it impacts patients. Althought the ideal is to be aware YEAR-ROUND.

*For information on MS Awareness Week, visit the National MS Society.
*For more information about multiple sclerosis, read MS Defined.



MS News: February 2010

I’ve been busy with some new contract work and so I’m just dropping a note to report a few of the latest happenings in the month of February. Be well and please hope for an early spring!


Joan’s MS Chat Room this Friday, February 22nd:

Join Joan’s MS chat room this Friday, February 26th, from 7 – 9 pm Eastern Standard Time. Log into the chat from Joan’s blog A Short in the Cord by clicking on the coffee cup in the right margin of the homepage. Always fun and not always reverent, the chat is for anyone who would like to join (not just Delaware area MSers.) The topic this session will be “information exchange”, so if you have any news, tips, or happenings you’d like to offer (or receive), come out and join the discussion. All from the comfort of your home.

Latest about Prospective Oral MS Disease-Modifying med Fingolimod, now called Gilenia®:

Novartis International AG, the pharmaceutical company who created FTY720 or fingolimod, an initial oral disease-modifying MS medication, has been given priority review from the U.S. Food and Drug Administration, due to the drug’s potential for multiple sclerosis. Novartis petitioned for FDA approval in December of 2009, and priority review speeds up the process– if the drug is seen to be safe for use– to six months or less. At the same time the FDA will carefully evaluate whether FTY720 or fingolimod should require a risk management program to coincide with drug usage. For more information about this oral medication, see the National MS Society’s news piece.

First American Study of Venous Insufficiency (CCSVI) in Multiple Sclerosis Patients Intrigues and Spawns Further Research:

This topic I find fascinating: the idea that MS patients have an insufficient flow of blood leading away from the brain, causing abnormal flow patterns and neuron damage within the brain. My thoughts are still murky about this topic and I’m not completely convinced of the validity of the idea, but I’m happy to see that the University of Buffalo has and is continuing to study the topic. They’ve performed a large study with MS patients and healthy control patients. Ultrasound venous Doppler tests were performed and a significant amount- over 55%- of MS patients were seen to have the vascular anomaly compared with about 22% of healthy individuals. These findings are prompting more research into this CCSVI phenomenon. The U of Buffalo has had the first large study after the idea was initially tested by Dr. Paolo Zamboni in Italy. For more information about this cutting-edge research, see the University of Buffalo’s news release.

MS Strength’s Fundraiser for the MS Society Scholarship Program is Soon to Hit $100 (AGAIN):

This is my own little project and if you glance to the upper right of the homepage here, you’ll see that the funds for the second donation are now over $95. Thanks for your help and for supporting a great cause: EDUCATION. You can read about recent recipients of the MS Scholarship fund by accessing the MS Society’s scholarship page.

AMPYRA: New MS Symptom Medication

I recently received the following press release about a new multiple sclerosis therapy (symptom-managing as opposed to disease-modifying) that is viewed to increase mobility. Given that we spoke a bit about it at my MS support group last night, I feel the need to share with you this information and to allow you to make your own decision as to whether to try it:

Hi Jen:

On January 22nd, the US FDA approved a new MS therapy called AMPYRA from Acorda Therapeutics. Ampyra is indicated to improve walking in people with MS as demonstrated by an increase in walking speed. As a leader in the effort to inform and inspire people with MS about the disease, we hope that you will want to share information about this important development with the people who follow your blog.

Below please find a press release with more details about Ampyra and Acorda. Please feel free to contact us with any questions.


Agnes Cao

Berry & Company Public Relations

57 East 11th Street

Sixth Floor

New York, NY 10003

Acorda Therapeutics Announces FDA Approval of

AMPYRA™ (dalfampridine) to Improve Walking in People with

Multiple Sclerosis – Demonstrated by Increases in Walking Speeds

HAWTHORNE, N.Y., January 22, 2010 – Acorda Therapeutics, Inc. (Nasdaq: ACOR) today announced that it has received marketing approval from the U.S. Food and Drug Administration (FDA) for AMPYRA™ (dalfampridine), an oral treatment to improve walking in patients with multiple sclerosis (MS). This was demonstrated by an increase in walking speed. AMPYRA demonstrated efficacy in people with all four major types of MS (relapsing remitting, secondary progressive, progressive relapsing and primary progressive). AMPYRA can be used alone or with existing MS therapies, including immunomodulator drugs.

“The approval of AMPYRA marks an important milestone for the many people with MS who suffer walking impairment. Difficulty walking is often cited by those with MS as one of the most pervasive and challenging aspects of their disease,” said Ron Cohen, M.D., President and CEO of Acorda Therapeutics, adding “We are enormously gratified to have achieved approval for the only medication indicated to improve walking in people with MS, and we thank all of the clinicians, people living with MS and medical and patient support organizations who joined in this effort over the past decade. Reaching this milestone underscores Acorda’s ongoing commitment to develop innovative therapies for people with neurological diseases.”

“Walking impairment affects a large majority of people with MS, and we are very pleased that the FDA has approved a new treatment that addresses this aspect of the disease,” said John Richert, M.D., Executive Vice President for Research & Clinical Programs at the National Multiple Sclerosis Society. “Continuing to advance clinical research and expand the range of therapeutic options for people with MS, including treatments for the most debilitating symptoms and challenges associated with the disease, is critical to helping people with MS.”

AMPYRA, which was previously referred to as Fampridine-SR, is an extended release tablet formulation of dalfampridine (4-aminopyridine, 4-AP), which was previously called fampridine. The FDA granted AMPYRA orphan drug status, which will provide seven years of market exclusivity for the drug. In addition, Acorda has several issued patents that cover the formulation and use of AMPYRA.

AMPYRA is administered as a 10 mg tablet twice daily, approximately 12 hours apart. The primary measure of efficacy in its two Phase 3 MS trials was walking speed (in feet per second) as measured by the Timed 25-foot Walk (T25FW), using a responder analysis. A responder was defined as a patient who showed faster walking speed for at least three visits out of a possible four during the double-blind period than the maximum speed achieved in the five non-double-blind, no treatment visits (four before the double-blind period and one after).

A significantly greater proportion of patients taking AMPYRA 10 mg twice daily were responders compared to patients taking placebo, as measured by the T25FW (Trial 1: 34.8% vs. 8.3%; Trial 2: 42.9% vs. 9.3%). The increased response rate in the AMPYRA group was observed across all four major types of MS.

During the double-blind treatment period, a significantly greater proportion of patients taking AMPYRA 10 mg twice daily had increases in walking speed of at least 10%, 20%, or 30% from baseline, compared to placebo. In both trials, the consistent improvements in walking speed were shown to be associated with improvements on a patient self-assessment of ambulatory disability, the 12-item Multiple Sclerosis Walking Scale (MSWS-12), for both drug and placebo treated patients. However, a drug-placebo difference was not established for that outcome measure.

“Walking impairment makes life more difficult for many of my patients,” said Dr. Andrew Goodman, M.D., Director of the Multiple Sclerosis Center at the University of Rochester. “With the approval of AMPYRA, we will have the first treatment option shown to improve walking speed in people with MS.”

Acorda expects AMPYRA to be commercially available in the United States in March 2010. AMPYRA will be distributed exclusively through a network of specialty pharmacies and coordinated by AMPYRA Patient Support Services. Dedicated and experienced customer care agents will be available to help healthcare professionals process prescriptions, work with insurance carriers to facilitate coverage, and help patients to access benefits available through reimbursement assistance and patient assistance programs.

AMPYRA Patient Support Services can be reached at 888-881-1918 for more information about AMPYRA.

The FDA approved AMPYRA with a risk evaluation and mitigation strategy (REMS) program comprising a medication guide and communication plan. The goals of the communication plan are to inform patients about the serious risks, including seizures, associated with use of higher than recommended doses of AMPYRA therapy, and the change of the established name from fampridine to dalfampridine.

AMPYRA will be marketed in the United States by Acorda’s established commercial organization, which successfully launched ZANAFLEX CAPSULES® (tizanidine hydrochloride). The Company plans to double the number of field- based sales professionals to approximately 100 by the time of commercial availability in March.

Under Acorda’s existing license and supply agreement with Elan Pharma International Limited, a subsidiary of Elan Corporation, plc (NYSE: ELN), AMPYRA will be manufactured by Elan Drug Technologies using one of their Oral Controlled Release Technologies, the MXDAS™ (MatriX Drug Absorption System) technology.

“We are delighted that AMPRYA will now be available to help people with MS. This approval represents another significant milestone in our successful collaboration with Acorda Therapeutics,” announced Shane Cooke, Executive Vice President and Head of Elan Drug Technologies. “The approval is the culmination of an enormous amount of work and effort over many years and is the second product in which we have collaborated with Acorda. We hope to find additional opportunities to work together in the future.”

Important Safety Information

AMPYRA can cause seizures; the risk of seizures increases with increasing AMPYRA doses. AMPYRA is contraindicated in patients with a prior history of seizure. Discontinue AMPYRA use if seizure occurs.

AMPYRA is contraindicated in patients with moderate to severe renal impairment (CrCl≤50 mL/min); the risk of seizures in patients with mild renal impairment (CrCl 51–80 mL/min) is unknown, but AMPYRA plasma levels in these patients may approach those seen at a dose of 15 mg twice daily, a dose that may be associated with an increased risk of seizures; estimated CrCl should be known before initiating treatment with AMPYRA.

AMPYRA should not be taken with other forms of 4-aminopyridine (4-AP, fampridine), since the active ingredient is the same.

Urinary tract infections were reported more frequently as adverse reactions in patients receiving AMPYRA 10 mg twice daily compared to placebo

The most common adverse events (incidence ≥2% and at a rate greater than the placebo rate) for AMPYRA in MS patients were urinary tract infection, insomnia, dizziness, headache, nausea, asthenia, back pain, balance disorder, multiple sclerosis relapse, paresthesia, nasopharyngitis, constipation, dyspepsia, and pharyngolaryngeal pain.

*For full prescribing information, please visit:

About AMPYRA (dalfampridine)

AMPYRA is a potassium channel blocker approved as a treatment to improve walking in patients with multiple sclerosis (MS). This was demonstrated by an increase in walking speed. AMPYRA, which was previously referred to as Fampridine-SR, is an extended release tablet formulation of dalfampridine (4-aminopyridine, 4-AP), which was previously called fampridine. In laboratory studies, dalfampridine has been found to improve impulse conduction in nerve fibers in which the insulating layer, called myelin, has been damaged. AMPYRA is being developed and commercialized in the United States by Acorda Therapeutics, and by Biogen Idec in markets outside the U.S. based on a licensing agreement with Acorda. AMPYRA is manufactured globally by Elan based on an existing supply agreement with Acorda.

About Multiple Sclerosis

Multiple sclerosis (MS) is a chronic, usually progressive disease in which the immune system attacks and degrades the function of nerve fibers in the brain and spinal cord. More than 400,000 Americans have MS. Most people living with MS are diagnosed between the ages of 20 and 50, and women are affected two to three times more often than men. Worldwide, MS may affect an estimated 2.5 million people.

Research indicates 64%-85% of people with MS have difficulty walking, and 70% of people with MS who have difficulty walking report it to be the most challenging aspect of their MS. Within 15 years of an MS diagnosis, 50% of people with MS often require assistance walking and, in later stages, up to a one third are unable to walk.

About Acorda Therapeutics

Acorda Therapeutics is a biotechnology company developing therapies for multiple sclerosis, spinal cord injury and related nervous system disorders. The Company’s marketed products include AMPYRA™ (dalfampridine), a potassium channel blocker approved as a treatment to improve walking in patients with multiple sclerosis (MS), as demonstrated by an improvement in walking speed; and ZANAFLEX CAPSULES® (tizanidine hydrochloride), a short-acting drug for the management of spasticity. The Company’s pipeline includes a number of products in development for the treatment, regeneration and repair of the spinal cord and brain.

About Elan Drug Technologies

Elan Drug Technologies (EDT) is the world’s leading drug delivery company and is a business unit of Elan (NYSE:ELN). EDT developed dalfampridine, using one of their proprietary Oral Controlled Release Technologies, the MXDAS™ (MatriX Drug Absorption System) technology. EDT aim to deliver clinically meaningful benefits to patients by using their extensive experience and proprietary delivery technologies in partnership with pharmaceutical companies. Products enabled by their technologies are used by millions of patients each day. More information is available at

Forward-Looking Statements

This press release includes forward-looking statements within the meaning of the Private Securities Litigation Reform Act of 1995. All statements, other than statements of historical facts, regarding management’s expectations, beliefs, goals, plans or prospects should be considered forward-looking. These statements are subject to risks and uncertainties that could cause actual results to differ materially, including Acorda Therapeutics’ ability to successfully market and sell Ampyra in the United States and to successfully market Zanaflex Capsules, the risk of unfavorable results from future studies of Amypra, the occurrence of adverse safety events with our products, delays in obtaining or failure to obtain regulatory approval of Ampyra outside of the United States and our dependence on our collaboration partner Biogen IDEC in connection therewith, competition, failure to protect Acorda Therapeutics’ intellectual property or to defend against the intellectual property claims of others, the ability to obtain additional financing to support Acorda Therapeutics’ operations, and unfavorable results from our preclinical programs. These and other risks are described in greater detail in Acorda Therapeutics’ filings with the Securities and Exchange Commission. Acorda Therapeutics may not actually achieve the goals or plans described in its forward-looking statements, and investors should not place undue reliance on these statements. Acorda Therapeutics disclaims any intent or obligation to update any forward-looking statements as a result of developments occurring after the date of this press release.

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