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

]]> http://www.msstrength.com/news-about-oral-fingolimod/feed/ 0 http://www.msstrength.com/world-ms-day-2010/ http://www.msstrength.com/world-ms-day-2010/#comments Wed, 26 May 2010 17:06:39 +0000 Jen http://www.msstrength.com/?p=3901

Today’s the second annual World MS Day, where nations bring about awareness and support for multiple sclerosis. For a glimpse of what different countries are doing for the day and ways that you can support the movement, check out WorldMSDay.org. And always bear in mind that awareness should be EVERY day!

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!

Joan

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 24^th 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 mslifelines.com.  Don’t wait – nominate your “lifeline” today!

For detailed program guidelines, visit www.mslifelines.com/redbook

***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 Strength.com 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!

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:

• Walk MS (fellow MS writer Nadja is featured in the campaign)
• Bike MS

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: Surviving the Information Age

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.

]]> http://www.msstrength.com/ms-awareness-week-march-8-14-2010/feed/ 2 http://www.msstrength.com/ms-news-the-month-of-february-2010/ http://www.msstrength.com/ms-news-the-month-of-february-2010/#comments Thu, 25 Feb 2010 22:25:34 +0000 Jen http://www.msstrength.com/?p=3567 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.

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.

Best,

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: www.AMPYRA.com

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 www.elandrugtechnologies.com.

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.

Terri Says:

Hi there, this is probably going to sound very strange but i just dont know what to do, i feel very alone and frightened to see my doctor to ask for help. i have so many symtoms and sometimes end up telling myself its just in my head and feel like im going crazy. im only 24 but at a lose end i have blurred vision dizzy spells, extreme muscle pain and can sometimes lay awake at night with muscles tightning cramping and twitching. i’ve had a few times where a certain part of my body just tightens to the point im unable to move it for days without it seriously hurting along side all my other symtoms, but after a few days it just disapears and i feel fine again and even more confused then before! have you any advise for me as i just feel as though if i walk into my docs and say i think i have ms that i will be laughed at.

Jen Says:

Hi Terri—

I don’t think this sounds strange at all. It actually sounds like SOMETHING, but the question is “what?” Since I’m not a doctor, I would suggest that you visit your primary care physician for a work-up. That’s how many MS patients start the journey towards diagnosis. If you find your primary doctor to be unhelpful, unknowledgeable, or unwilling to refer you to a specialist, then you might want to seek out a neurologist (an MS specialist) on your own. This type of doctor is the one who can diagnose multiple sclerosis (or rule it out.) I also suggest that you continue to pursue this until you get a satisfactory, definite answer. You may change doctors a few times, but make sure that your eventual doctor takes you seriously.

And please know that there are many of us MSers and others with conditions that are here to support you, whether you have MS or not. If you seek out a local MS organization near you, you may also find contacts for good doctors and/or support networks.

I’m hoping the best for you: feel free to email me or comment again. I’d love to hear how things work out. womenzhealth@yahoo.com

Hi B–

Lots of things….

First, everyone is different with MS. Some have relapsing/remitting disease that comes and goes, and it can cause continual damage when it strikes. Do you know if your friend has relapsing/remitting MS or progressive MS? The progressive type often takes over after years of relapsing/remitting. It is a worse kind because it keeps progressing with no remissions.

Men often have worse MS cases than women, although less men develop it. But it sounds like your friend is still mobile. Does he use any canes, crutches, a scooter, or a wheelchair? Sometimes people with MS don’t need these devices all of the time, just during attacks. It depends on the person.

People react differently to MS, depending on how severe they have it. Some are hardly affected, whereas others are severely challenged (such as the woman you saw in the movie. I’m thinking it might have been Annette Funicello, who has a very progressive form of it.) The vast majority of patients have a moderate case, where they are affected but not severely enough to be in a wheelchair. I hope this is the case with your friend. Does he work? How old is he? I myself am home on disability, but I don’t use assistive devices on good days. I do get very tired from the MS, which is a common symptom.

What you can do for your friend is ask him what would help or cheer him. Does he need help with any chores? Does he just want you to visit and spend time with him? MS can be very isolating if a patient is stuck at home. Would he like to join a support group that you could take him to? I find when people ask me what I want/need then I can be specific and not have them always guessing and wishing they knew what to do. And sometimes just being there for support is fantastic.

About the sexual activity: this is a tricky area, because many patients have problems in this realm. Due to numbness in the genital region. Not all patients have this, but sometimes males can have problems getting erections because they lack feeling in this area. It depends on the patient. Others can be mildly affected and still maintain active sex lives.

Basically MS is a disease of the central nervous system (brain and spinal cord) where the body attacks itself (autoimmune) and damages nerve coverings. This causes all sorts of symptoms like numbness, pins-and-needles, loss of function in body parts, pain, vision problems, and so on. Some of this damage can be temporary and sometimes it ends up being permanent. We currently have several medications that HELP the MS, but there is no CURE at this time. But there is a lot of research going on and the chance of a cure in the future is good.

I hope this has helped a bit. Here are some websites that may also help you and your friend. Feel free to pass my website along to your friend as well. I like to provide MS news, support, and my own MS story:

www.multiplesclerosiscentral.com
www.nmss.org (the National MS Society in the U.S.)
www.msfocus.org

Maris Says:

Thanks for the Jethro Tull interlude (music video.)  Happy holiday season!

Maris in Israel

Jen Says:

You too!

Mike Says:

My fear is that I might be fooling myself that I can handle the MS…am I kidding myself? My father- in- law had MS for 35 years and it was horrible on the family, so I can see the possibilities for me.

Jen Says:

I don’t think you’re fooling yourself. I think you are a different patient than your father-in-law and you just have to see where your path takes you. Yes, you may have a similar path as him, but it’s not a given. Thankfully MS is very individual and no two cases are exactly alike. This makes it difficult to know what will happen to you, but— JOYFULLY— you will not know what will happen and you can create your own life and live it the best that you can.

Thanks for reading, Mike, and I hope for your courage and individuality to take your life by the bullocks and LIVE.

I’m looking forward to getting a copy of this new multiple sclerosis book I’ve recently discovered. Two of my favorite online writers, Diane and Joan, have been included in an MS anthology that gives patients’ stories about the trials and victories of living with multiple sclerosis. The book is Voices of Multiple Sclerosis: The Healing Companion, with more than 30 individual stories about dealing with the condition:

States Diane: “LaChance Publishing has sold books filled with the personal stories of those whose lives have been touched by breast and lung cancer, autism, Alzheimer’s, and most recently multiple sclerosis. The “Voices of…” book series is critically acclaimed, and 100% of the net proceeds go toward the foundation Debra LaChance has started. Read about The Healing Project and buy a book for yourself or a loved one who is dealing with a health condition in the book series.”

“When I was first diagnosed with MS, I searched (and purchased) any MS book I could find. I still have them all. But, with the exception of a few autobiographies, there were no stories about the experiences of regular people. I had learned the technical aspects of my new friend (multiple sclerosis), but I would have given anything for a book like The Voices of Multiple Sclerosis. Not only does it cover, in easy-to-understand terms, all the facts about MS, but it is also filled with short stories written by others with MS, as well as those who care for someone with the condition. And unlike many other books, it is light-weight and easy to hold. I couldn’t put it down until I’d read every story. I am honored to have one of my stories included in this book.”

***Voices of Multiple Sclerosis is available in bookstores, at online booksellers ( Amazon.com), in most major libraries, and at LaChance Publishing. This would make a great holiday gift for the newly diagnosed, veteran MSers, or anyone who wants to better understand multiple sclerosis.

]]> http://www.msstrength.com/new-non-profit-ms-anthology/feed/ 0 http://www.msstrength.com/ms-news-updates/ http://www.msstrength.com/ms-news-updates/#comments Wed, 21 Oct 2009 19:53:42 +0000 Jen http://www.msstrength.com/?p=3046

It’s been a bit of a crazy week here at the Jersey shore, and so I’m posting a catch-all of latest news. Hope this finds you well and happy:

Joan’s Next MS Chat Room Session: This Friday, Oct 23rd

Come enjoy a Halloween party with Joan and her fellow chatters. The session is from 7 – 9pm, Eastern Standard Time. All are welcome, and more info and login instructions are available at her blog A Short in the Cord……… Joan’s chat is THE BEST!!

Glenn Close’s Mental Health Website

I learned about this site just this morning, as actress Glenn Close and her sister Jessie told of Jessie’s long battle with bipolar disorder on ABC-TV’s The View.  Having struggled with depression since multiple sclerosis altered my life course, I am a HUGE advocate for mental health and bringing knowledge to the forefront. So many people hide their emotional problems because of embarrassment/shame, misunderstanding, and doubt. I seek the ongoing help of a social worker and a psychiatrist— I take an antidepressant— and I want to pass this helpful site on to you and anyone else you might know who is afflicted by emotional illness. There’s help and support: www.bringchange2mind.org

MS Strength has Reached its (First) Goal of $100 in Ad Revenue

It’s taken over a year, but MS Strength has reached the $100 threshold needed for Google to pay out ad revenue. 100% of the profits will be donated to the National MS Society (the U.S.), who has a high priority of using funds towards MS research. The thermometer is set back to $0, and the next donation will be made at the next $100 threshold. Thanks to those who helped the thermometer rise; it feels great to take this money and donate it to our MS cause. A future post will tell about the actual donation, as I am currently waiting for Google’s check.

A New Website for MSers Which Chronicles 5 Patients’ Journeys and Distributes Information about Disease-Modifying MS Medications

I, along with 4 other MS webwriters ( Lisa, Julie, Kimberly, and Bill) have been hired to video blog our multiple sclerosis stories—along with personal journal entries— at a new website sponsored by EMD Serono, a maker of one of the current disease-modifying MS medications and a future MS medication. The site focuses on our stories and it also provides drug information to those who subscribe. As a HUGE advocate for newly-diagnosed patients learning about and trying disease-modifying medications, I’m proud to have been tapped and I feel myself helping others to weigh their medication options, no matter what the brand and the final decision. Thanks, EMD Serono, for allowing the 5 of us to accomplish this: www.howifightms.info

A Local Piece of News About Officials “Spinning Wheels for a Day”

This story caught my eye— I found it at the Nat’l MS Society’s FB page. Interesting, and it gives those in charge a chance to see what others with adaptive devices must navigate on a daily basis. I doff my hat to you, fellow resident Jackie Jackson: The Star Ledger’s Oct 15th Middlesex County News