Judy's Notes

Ronn and I will be on a road trip to Maryland 7/22-8.1to see family and friends and to eat blue crab, if there are any available, since many come from the Gulf Coast (Don’t tell anyone from Maryland that.) If you need me, my cell is 446-2990.

July 20—10:00 at La Hacienda. Our meeting on “Cognition” will be presented by Connie Kay. This will be an interesting, entertaining and important for caregivers as well as those with MS.

August 3—11:30 We will meet for lunch at Orange Blossom Country Club on the east side of Rte 441. RSVP to kathysunset@embarqmail.com or 751-0207.

August 10—9:30 We will meet at Spanish Springs Lanes for Bowling and we go to lunch after bowling. Join us for bowling or just for lunch.

August 17—10:00 We will meet Dr. Smirnoff, neurologist, who has an office in The Sharon Morse Building . He will introduce himself and tell us about his practice. Steve Berkovitz will speak about public transportation available in The Villages.

August 24—There will NOT be a caregivers meeting. The meeting room is being used for another function.

De Burrows is now living in an assisted care facility in Michigan near her family. Her home at 8301 SE 176 Lawson Loop is now for sale. It has 3 Brooms/2 Baths and has been modified for accessibility. There is a pool with a ramp and rail for access. Asking price $269,000; the Bond is paid off. If you are interested, call Gerald Bowles at 753-4000

Connie Kay is at home driving her modified van and enjoying her new found independence.

Amy Judd is living with and caring for Connie. Many of us have met Amy because she has been attending MS functions. Amy would like to clean houses. Connie says she is very thorough. If you would like her help, you can contact Amy at 753-4395.

Warning: Ronn had an unpleasant happening in July which required an evening in the ER and a night in the hospital. Monday he had itchy blotches on his body. He took Benedryl which didn’t stop the problem. The next morning in addition to the original problem, the left side of his face and lips were swollen. He saw a nurse practitioner in his doctor’s office who gave him 3 prescriptions. While he was waiting for the prescriptions the left side of his tongue began to swell. She gave him a shot and sent him home with instructions to go to the ER if his tongue swelled more. It did and we went to the ER. The ER Dr. decided it was due to his blood pressure medicine which is an ACE inhibitor. The doctor sees this 2-3 times a week with the “pril” drugs among others. Ron was taking RamiPRIL. Our son-in-law had three similar episodes and didn’t know what caused them. He was on a different “pril” drug. This can happen several years after beginning this medication as the body sets up a sensitivity to the drug. This is similar to the person who eats seafood for thirty years and then has an allergic reaction to shell fish.

If you are disabled in a chair and your entire household income from all sources is less that $25,300, you do not have to pay property tax.

If you are a disabled veteran who was disabled while you were in the service, you do not have to pay property tax.

There is a great amount of medical equipment gathering at our house. I would like to find a storage unit free or very cheap. If anyone has space in a locker which we might share or a connection with a storage company which might donate space, please call me. 750-6689

At our house we have: a standard wheelchair, transfer chair, a sliding bench to transfer into the tub, 2 twin-size washable soft, fleecy bed pads, a grabber, an adjustable gold metal cane, a large seated walker, a regular walker, a 10-foot folding aluminum ramp, a raised seat for a commode, a bedside commode/shower seat and an over-the-bed trapeze. If you can use any of these items, pleeeeeese call.

July 13—Bowling 9:30 Spanish Spring Lanes. We go to lunch after bowling. No reservation needed.

July 20—10:00 Meeting at La Hacienda Center. Topic will probably be about cognition.

August 3—11:30 Luncheon probably at Orange Blossom. I will confirm. RSVP to Kathysunset@embarqmail.com or 751-0207

MS Trial Alert: Study Recruiting 8,000 People to Study JC Virus Levels in People Taking Tysabri
Summary: Investigators nationwide are recruiting 8,000 people with relapsing MS who are taking Tysabri® (natalizumab, Biogen Idec and Elan Pharmaceuticals). The primary goal of this study is to better understand whether the incidence of PML (progressive multifocal leukoencephalopathy, a severe brain infection caused by JC virus) in Tysabri-treated patients who do not have detectable antibodies to JC virus (antibody negative) is lower than in patients who have detectable antibodies to JC virus (antibody positive ). This is a research question and it is not known whether detection of antibodies to JCV in an individual can predict their risk of developing PML. For this reason, the test result from this study should not be used in treatment decisions. The study is sponsored by Biogen Idec.

Please note: This is not a clinical study of an MS therapy, but rather a research investigation related to MS.

. According to information released by Biogen Idec, as of May 6, 2010 there have been 49 confirmed cases of PML among people who have used Tysabri after it became available for prescription. At this point, there is no way to determine the risk for developing PML in people taking Tysabri.

Scientists at Biogen Idec have developed a blood serum test that would detect antibodies to the JC virus. The presence of antibodies indicates that a person has at some point been infected by the virus, which usually does not cause symptoms but lies dormant. In a study of 13 patients who developed PML on natalizumab, all had serum antibodies prior to the onset of PML. The team has tested 800 serum samples and has found this test can distinguish between people with MS who are negative for antibodies (about 40 to 50%) and those who are positive (about 50 to 60%). (Abstract S31.003, American Academy of Neurology Annual Meeting, 2010) The company is now conducting further studies of the test in people starting or already taking natalizumab therapy to determine whether it can reliably predict a person's risk for developing PML, which may help doctors and patients make more informed treatment choices.

The following information comes from Kathy Klein. This is serious. Our nephew was bitten a few years ago. He was sitting on a porch step and grabbed on to the step with his fingers on the under side of the step….big mistake!

Cindy Berkovitz fell Tuesday a week ago and is currently in OHME Rehabilitation facility which is the 3^rd floor of LRMC North.

Surgery at The Villages hospital was successful. Hopefully next Thursdays x-rays will confirm that. She has to stay off the leg for 2 to 3 months (ZERO pressure) and has a lot of healing both bone and skin. Cindy is now settled in rehab. I went to a number of facilities and discussed them with her. She was lucky to get into OHME Rehab Center in Leesburg. Cindy will receive 3 hours of therapy Monday through Friday and one hour on Saturday and Sunday. Her week day mornings are very busy with therapy. If you plan to visit her I recommend after lunch between 1:00 and 7:30. She usually has 1/2 to 1 hour of therapy in the afternoon. She gets her daily schedule every morning. Cindy has a direct phone line. Info is as follows:

I hope you saw the article about MSVP's donation of a ramp to the Spanish Springs Bowling Alley. It was in Wednesdays. Local Section of the paper.

VCC Members: If you use The Villages.Net email and you receive the request for information shown below, please delete it.
If you received it & have responded, please contact the villages.net and change your password ASAP!!!!!!
Per: Steve at The Villages.Net The following text in italics is the bogus message.

"Dear subscribers.

This message is from the Thevillages Email Administrator IT Service to
all our email account subscribers.You are to provide to us the below
information to revalidate your account due to spam and to Thevillagesgrade
the new 2010 spam version.

Notice:Your Thevillages Email account will be expired after a week, if you
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June 1-11:30 Luncheon at Longhorn's Steak house on Rt 27/441. RSVP to kathysunset@embarqmail.com or 751-0207

June 8-9:30 Bowling at Spanish Springs Lanes. We go to lunch after bowling. No reservations are needed.

I asked a friend Steve Ralph if he would take a few minutes of video and put it on u tube. This is of the 2010 Lady Lake Walk MS at The Villages Polo Fields.

Dave and Ann Steiner are new members who joined us today for lunch. Dave suggests Canadian TV has 5 excellent videos on ‘The Liberation Treatment for MS’ or what I call ‘CCSVI’. www.ctv.ca. Also, Albany, NY is doing CCSVI studies. Contact information is wilcoxm@albanyvascular.com

May 11—9:15 Bowling at Spanish Springs Lanes. We go to lunch after bowling Reservations are not necessary.

If we were to have a fundraiser selling the hardbacks and paperbacks which we are no longer reading, who would be able to donate to our book table? Please let me know if you would like to move some books out of your house. Judy

I work for an independent research company, Oxford Outcomes, located in Bethesda, MD. Our contact at MS Foundation suggested contacting your support group. Currently, we are recruiting patients for a study evaluating patient preferences related to potential efficacy and side effects associated with relapsing-remitting multiple sclerosis (RRMS) treatments. Patients will complete one online survey lasting 30 minutes and will be compensated ($50) for their time.

This study including the advertisement text has been approved by the IRB and DOES NOT INVOLVE DRUGS OR ANY INVASIVE PROCEDURES. We are only interested in patient opinions. All information provided by patients will be will remain strictly confidential and will not be shared with anyone other than the study researchers from Oxford Outcomes.

Oxford Outcomes is conducting research to understand patient preferences with respect to the potential effectiveness and side effects of treatments for people with relapsing-remitting MS (RR MS). They are seeking to recruit up to 400 people with RR MS who are residents of the United States, 18 years of age or older, have adequate written and oral fluency in English, and are willing and able to provide written informed consent

Eligible subjects will be directed to a secure web server which will host preference and demographic questionnaires. The questionnaires should take approximately 30-45 minutes to complete. Subjects will be compensated upon completion of the questionnaires online.

The preference survey will ask subjects to rate desirability of various attributes of MS treatments, such as potential side effects, effectiveness, and administration regimen, and to indicate their preferences among hypothetical MS treatments. The clinical and demographic questionnaire will ask patients about their MS treatment and management experience as well as a set of demographic questions.

For more information or to participate, please contact Alexis or Tina, toll-free, at 1-866-893-0282, or e-mail Alexis at alexis.french@oxfordoutcomes.com.

I would be happy to provide you additional information or documentation related to the study if you would like to see it. I can be reached at (240) 482-0034, ext 27. I look forward to hearing from you. Thank you.

A man came over and offered his services as a painter to a female putting gas in her car and left his card. She said no, but accepted his card out of kindness and got in the car. The man then got into a car driven by another gentleman. As the lady left the service station, she saw the men following her out of the station at the same time. Almost immediately, she started to feel dizzy and could not catch her breath. She tried to open the window and realized that the odor was on her hand; the same hand which accepted the card from the gentleman at the gas station.
She then noticed the men were immediately behind her and she felt she needed to do something at that moment. She drove into the first driveway and began to honk her horn repeatedly to ask for help. The men drove away but the lady still felt pretty bad for several minutes after she could finally catch her breath. Apparently, there was a substance on the card that could have seriously injured her.
This drug is called 'BURUNDANGA' and it is used by people who wish to incapacitate a victim in order to steal from or take advantage of them. This drug is four times dangerous than the date rape drug and is transferable on simple cards. So take heed and make sure you don't accept cards at any given time you are alone or from someone on the streets. This applies to those making house calls and slipping you a card when they offer their services.

While browsing on the web, a notice is given to press your F1 key (that's across top left of your keyboard, and usually means "Help". Not this time.

It will release a potent virus in your computer. . . if you don't press F1, you will be reminded until you do. . .just click on the little 'x' on the window, or close your browser totally - might even be better to reboot.

Click on the SNOPES link below for further confirmation at of this threat.

Do not press the F1 key no matter how many times your computer asks you to.

Researchers at SUNY Upstate Medical University in Syracuse New York recently announced that pelvic floor disorders in women are associated with low vitamin D levels.

In a paper published in the April issue of Obstetrics and Gynecology, Dr. Samuel Badalian and Paula Rosenbaum studied 1,961 women and found 23% of American women over the age of 20 have a pelvic floor disorder, which often leads to urinary incontinence. Women who are overweight or who have had more than one child are at an increased risk.

The researcher found that low vitamin D levels predicted pelvic floor disorders, even in younger women and that urinary incontinence was twice as likely in vitamin D deficient women compared to women with higher vitamin D levels.

“Our findings suggest that treatment of vitamin D insufficiency and deficiency in both premenopausal and postmenopausal women could improve pelvic muscle strength, with a possible reduction in the prevalence of pelvic floor disorders, including urinary incontinence.”

Press contact information: Dr. Samuel Badalian, MD, 104 Union Ave., Suite # 803, Syracuse, NY, badalian@netzero.com

I have found a resource that may be helpful to your members & clients who may qualify for this service so I’m sharing :o)

Please visit the website link to get details & share with others. Thanks a bunch & have a wonderful Wednesday!!

Dr. Kantor has several dozen blogs covering various MS problem including the one he presented here in November. I encourage you to visit them. Judy

This message is from Steve Berkovitz.
"This is of the 2010 Lady Lake Walk MS at The Villages Polo Fields. I asked a friend, Steve Ralph, if he would take a few minutes of video and put it on u tube. Please forward this link to those you feel may want to see it. http://www.youtube.com/watch?v=3zgrQProK5s

I have spoken to our group about the Congressionally Directed Medical Research fund and how in the past couple of years we have been successful in securing millions of dollars for MS Research and that recently, $2.4 million of it is funding the stem cell research at the Cleveland Clinic.

It is now time for the 2011 Budget and our efforts to secure even more funding for MS research. The Society is urging all connected to the disease to write to their Congressional representatives to urge them to fund MS research. The Society is offering an easy way to do this online. Here is the web link: http://capwiz.com/nmss/issues/alert/?alertid=14845801&queueid=%5Bcapwiz:queue_id%5D

April 6—at 11:15 luncheon at Gator’s Dockside. RSVP to Kathy at kathysunset@embarqmail.com or 751-0207

Saturday April 10th Seminar-- Route 46 Entertainment District, 4316 W. SR 46, Sanford, FL 32771, 10:30 Registration, 11:00 Program “Living Well—How to Live a Healthy Lifestyle with MS” featuring Mark Cascione, MD and Connie Easterling, ARNP. Lunch will be provided. RSVP 1-877-329-8327

April 13—at 9:15 Bowling at Spanish Springs Lanes. We go to lunch after bowling. Reservations are not necessary

April 20—10:00 Meeting at La Hacienda Center. Pat Chuck from The Society will speak on cognitive issues.

We had 2 successful fundraisers this week. On Thursday Mary Jo Vitale and Dave Worker played to a packed house at the Church on the Square. Our sponsors were so impressed they are ready to help again next year.

On Sunday 76 women played Mah jongg for prizes. TooJay's catered and Elaine Johnson, a friend of Barb's, baked 36 dozen cookies for the event. It was another sucessful fundraiser.

RSVP a must: March 16th we will host a seminar sponsored by TEVA Neuroscience. It will be held at La Hacienda Center from 10:00-12:45. The seminar is open to all MS groups in the area. TEVA will serve breakfast treats, but not lunch. Since space is limited you must RSVP to Joe 751-1663 or iamjoe640@aol.com. Space is limited. After a Walk update, Dr. Gaudier will field questions, we will have a short break, then Jack LLewellyn, Sports Psychologist and Motivational speaker will talk. For those of you who have not heard Jack speak, you are in for a treat. He is both inspirational and entertaining. Those who have heard him will definitely be there to hear him again!
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At our February meeting we met a new member Vita Crain she has contact with and/or works at a medical closet associated with St. John's and at Love, Inc.Vita knows of a family (Mom, Dad and four boys) whose home burned down Thursday of last week and everything is gone. Other organizations took things to them on Sunday but they still need a microwave and a table and chairs where they can eat. They may alsp need a bed, but I'm not sure.If you can help, please let me know.
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Many of us were excited about the opportunity to be part of a large international study on MS and were looking forward to having Dr. Kantor's staff here to draw bloods. I received the following email from Pat Chuck. It appears this will not happen the way we had planned. Perhaps we can find another way.

It has come to our attention that Dr. Daniel Kantor of Jacksonville has been approaching Society self help groups to discuss a research project he is involved with, and is also collecting blood samples from volunteers at the conclusion of the program.

The National MS Society North Florida Chapter is supportive of MS research that is performed according to the strict and usual protocols of academic research. However, it is in the opinion of the Clinical Advisory Committee and chapter and national staff that Society self help groups are not the appropriate venue for taking blood samples for research due to safety concerns.

While he is welcome to discuss his research and offer interested participants a way to get in touch with him, we have asked that Dr. Kantor not take samples before, during, or after any Society sponsored meetings.
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Healthy Recipes
Creamy Asparagus Pasta Recipe
Nutritional Info (Per serving):
Calories: 359, Saturated Fat: 4g, Sodium: 602mg, Dietary Fiber: 7g, Total Fat: 10g, Carbs: 55g, Cholesterol: 18mg, Protein: 18g
Carb Choices: 3

Recipe Source:

Prep Time: 15 mins
Cook Time: 20 mins
Total Time: 35 mins
Ingredients

Preparation

1. Bring a large pot of water to a boil. Add pasta and cook for 3 minutes less than the package directions. Add asparagus and continue cooking until the pasta and asparagus are just tender, 3 minutes more. Drain and return to the pot.

2. Meanwhile, whisk milk, mustard, flour, salt and pepper in a medium bowl. Heat oil in a medium saucepan over medium-high heat. Add garlic and cook, stirring, until fragrant and lightly browned, 30 seconds to 1 minute.

3. Whisk in the milk mixture. Bring to a simmer, stirring constantly, and cook until thickened, 1 to 2 minutes. Stir in tarragon, lemon zest and juice.

4. Stir the sauce into the pasta-asparagus mixture. Cook over medium-high heat, stirring, until the sauce is thick, creamy and coats the pasta, 1 to 2 minutes. Stir in 1/4 cup Parmesan. Divide the pasta among 4 bowls and top with the remaining 1/4 cup Parmesan.

Free entertainment: On Monday February 15^th we have been invited to see the Villages Theater Company’s performance of Neil Simon’s “The Last of the Red Hot Mamas” at Mulberry Recreation Center. The performance begins at 3:00 and there is no charge. This performance is put on at no charge for those with a handicap and one carepartner. In April they will present “The Trip to Bountiful.” Time and date to be announced

Free items: Ruth and Bob Larmondra are moving to Virginia in April and have the following items available to anyone who would like them: bedside commode, walker and crutches. For more information, call Ruth at 347-6028.

Feb 16—Meeting. John Simonetti will tell us about the exciting research happening around the world and update us on the new medications. Steve Berkovitz and Barb Gaines will talk about upcoming fundraisers and the Walk.

Feb 18--7:00pm Church on the Square. Concert by Mary Jo Vitale and Dave Worker. Tickets are available through the Box Office or on line.

Feb 21—9:00-4:00 Mah jongg Tournament at Bridgeport Recreation Center. There are still a few seats available.

Mar2—11:15 (note time change) Luncheon at Ay Jalisco! on Main Street Spanish Springs. RSVP to Kathysunset@embarqmail.com or 751-0207.

Mar 9—9:15 Bowling at Spanish Springs Lanes. We go to lunch after bowling. Reservations are not needed.

Mar 9-- Mar 2—3:30-9:00 Vendor night at Lake Sumter Landing with the Wheel of Hope

Mar 16—MSVP will host a seminar sponsored by TEVA Neuroscience. It will be open to those with MS from the surrounding area and breakfast treats will be available. The speakers for the day include Dr. Gaudier who will do a Q & A and Jack Llewellyn, Sports Psychologist and Motivational Speaker who is both informative and entertaining. This one will be excellent!

Our own Connie Kay was interviewed by CNN while she was at the Shepherd Center in Atlanta, a rehabilitation center for those with spinal cord injuries. This segment featuring Connie was aired at 9:00am December 26th and can be seen by typing www.cnn.com then type 'shepherd center' and click on the magnifying glass. Then click on the small picture at the center of the screen.

Tuesday January 5th at 11:30 we will have lunch at Seafood Galley. RSVP by Sunday 1/3/10 to kathysunset@embarqmail.com or 751-0207.

If you will attend the seminar on Saturday at Canal Recreation Center January 16th at 10:30, RSVP to kathysunset@embarqmail.com with your lunch order. This seminar and lunch is provided by Biogen Idec makers of Avonex and Tysabri.

If you would like tickets to the Mary Jo Vitale and Peter Worker concert on February 18th at 7:00 at The Church on the Square, please contact Steve Berkovitz 751-0207 for tickes. We have accessible seating and the best seats in the Church!

There is funding for 10 people who would like to do therapeudic horeseback riding. First time participants will receive preference for the grant money. The 10-week session will start in February or March. You can print forms from their web site mtraocala.org. The forms must be signed by your neurologist.

Our member Pat Provance, PT sent this to me. Pat is a consultant to MSAA, NMSS and MSF

Staying One Step Ahead - PROGRAM TWO:
A Four-Part Live Video Webcast Series on
Mobility and Multiple Sclerosis

Join MSAA online for this free interactive live webcast where MS fitness expert Brad Hamler discusses and demonstrates safe and effective exercises which help fight fatigue, build strength, decrease spasticity, and improve walking, balance, and coordination. These stretches and strength training exercises can be done by patients at any level of MS. Also, learn from Brad, who is the author of Exercises for Multiple Sclerosis, about the keys to sticking to your exercise program and how to work with your body - not against it.

Program Two: Exercise and Multiple Sclerosis

When: Thursday, January 21, 2010
8 pm - 9 pm EST (7 - 8 pm CST / 6 - 7 pm MST / 5 - 6 pm PST)
Presenter: Brad Hamler, MS fitness expert and author

Join us online - Register for the webcastThe following webcast series is presented by the Multiple Sclerosis Association of America and is made possible through the generous support of Acorda Therapeutics and Eli Lilly and Company.

To register:
www.msaassociation.org
Go to the 3rd block down on the right.
Click on "Exercise......Register now"
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There is exciting news regarding research in the quest for a cure for MS. I have copied several articles which I feel give a good overview of some studies which are underway including LDN for PPMS, CCSVI studies in Italy and in Buffalo, New York. which are looking for volunteers, and a summary of programs which NMSS supports.
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(1) PILOT TRIAL NEWS - 1: Mult Scler. 2008 Sep;14(8):1076-83 A pilot trial of low-dose naltrexone in primary progressive multiple sclerosis. Dept. of Experimental Neurology (INSPE) and Department of Neurology, San Raffaele Scientific Institute, Via Olgettina 58, Milan, Italy; Fondazione Don Carlo Gnocchi, IRCCS, Milan, Italy. A sixth month phase II multicenter-pilot trial with a low dose of the opiate antagonist Naltrexone (LDN) has been carried out in 40 patients with primary progressive multiple sclerosis (PPMS). The primary end points were safety and tolerability. Secondary outcomes were efficacy on spasticity, pain, fatigue, depression, and quality of life. Clinical and biochemical evaluations were serially performed. Protein concentration of beta-endorphins (BE) and mRNA levels and allelic variants of the mu-opiod receptor gene (OPRM1) were analyzed. Five dropouts and two major adverse events occurred. The remaining adverse events did not interfere with daily living. Neurological disability progressed in only one patient. A significant reduction of spasticity was measured at the end of the trial. BE concentration increased during the trial, but no association was found between OPRM1 variants and improvement of spasticity. Our data clearly indicate that LDN is safe and well tolerated in patients with PPMS. PMID: 18728058 PubMed - in process http://www.ncbi.nlm.nih.gov/pubmed/18728058 By: FRC Blog ? Multiple Sclerosis Treatment with Adult Stem Cells ? Blogging | December 14, 2009 at 10:42 pm [...] Read more: FRC Blog ?
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MS Patient Videos Found on the Adult Stem Cell Therapy website Take a look at Preston Walker's Video, created in September 2009. Click this link: http://adultstemcelltherapy.ning.com/video/preston-walker-1 See Preston, before and after his stem cell treatment Hear of his symptoms, including fatigue and depression Click the above link and take the time to watch and listen Tuesday, December 22, 2009 ImmunoSupressive vs Immunomodulator Therapies for Multiple Sclerosis What are immunosuppressive drugs? Research indicates that MS is an autoimmune disease. As immunosuppressants have been proven to be beneficial in other autoimmune diseases such as rheumatoid arthritis and psoriasis, drugs that have an immunosuppressant function have shown to be potentially beneficial in controlling disease progression in patients with MS. Immunosuppressive drugs work by suppressing the body's immune reaction, and they prevent the body's 'good' white cells (leukocytes) from attacking each other. Normally, leukocytes help regulate the immune system. Immunosuppressive drugs offer another way of treating MS but they are normally used if the disease is progressing in spite of immunomodulatory treatment. There are a variety of immunosuppressive drugs that have been used in cancer treatment and that have proved effective in treating advanced forms of MS. Specific immunosuppressive drugs used in MS therapy include azathioprine, mitoxantrone and occasionally cyclophosphamide or methotrexate. However, only Tysabri? (Natalizumab) (in the USA) and Novantrone? (Mitoxantrone) (in the USA, France and Switzerland) are currently licensed specifically for use in the treatment of MS. +++++++++++++++++++++++++++ What are immunomodulatory drugs? Immunomodulatory drugs are Disease Modifying Drugs(DMDs), which alter the course of the disease. Treatments for MS have been considerably advanced by the availability of Disease Modifying Drugs. Positive outcomes in people with relapsing forms of the disease have been demonstrated, including: reduction in the frequency and severity of relapses; and reduction of brain lesion development, as evidenced by Magnetic Resonance Imaging, (MRI), and (for some DMDs) the possibility of future disability. As the name suggests, immunomodulatory drugs 'modulate', i.e. change, the disordered immune processes of MS, and have a corrective effect on the immune system. Interferons belong to this group of drugs. Interferons are small soluble proteins or glycoproteins that, as 'messenger substances', modulate immune responses. Read more about Interferons and the role they play in treating MS. Recent results from clinical studies indicate that therapy should begin as soon as possible after diagnosis. Dosage and route of administration of current available immunomodulatory drugs Proprietary name Rebif? Avonex? Betaferon? Copaxone? International non-proprietary name Interferon beta-1a Interferon beta-1a Interferon beta-1b Glatiramer Acetate Delivery systems Ready to use Pre-filled syringe Reconstitution needed / pre-filled syringe Reconstitution needed Ready to use pre-filled syringe Available dosage 22 mcg three times a week or 44 mcg three times a week 30 mcg once a week 0,25 mg every other day 20 mg daily Route of administration Subcutaneous injection Intramuscular injection Subcutaneous injection Subcutaneous injection Other characteristics, such as indications, format, etc. may vary from one country to another. Always consult the product leaflet. SOURCE for the above data comes from the MS-Network - However, their information has not been updated in a couple of years. Such the case that Cytoxan and Imuran are also being used for MS and are immunosupressants.
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All Press Releases for December 22, 2009 Subscribe to this News Feed National MS Society Continues to Propel Research Forward end MS - Launches 2010 With Call for Research Grants to Pursue CCSVI 2009 saw exciting research progress, unprecedented opportunities on the horizon, and more scientists than ever working on resolving important questions. Despite the year's economic and financial challenges, the National Multiple Sclerosis Society continues to propel research forward to end MS. New York, NY (Vocus/PRWEB ) December 22, 2009 -- 2009 saw exciting research progress, unprecedented opportunities on the horizon, and more scientists than ever working on resolving important questions. Despite the year's economic and financial challenges, the National Multiple Sclerosis Society continues to propel research forward to end MS. In 2009 the Society provided over $33.5 million to support 345 new and ongoing projects in its research portfolio, plus $1.5 million for Fast Forward, the Society's drug development subsidiary which continues to attract new funding streams. In addition, thanks to the efforts of our MS activists, $5 million was specifically allocated for funding MS research out of the 2009 Department of Defense budget. As 2009 comes to a close, the Society maintains its nimble pursuit of promising research opportunities to end MS and has issued an international call for grant applications to expeditiously examine the potential impact of the chronic cerebrospinal venous insufficiency (CCSVI) hypothesis on disease process in MS. Working with MS Societies around the world, an international panel will be convened to conduct a joint expedited review of the grant applications submitted in order to ensure a coordinated, strategic approach to funding the best research examining the CCSVI hypothesis in 2010. http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=2206 The following is just a small sample of the many important, potentially high-impact research results that occurred during 2009, which support the Society's three research goals: stopping MS, reversing the damage and restoring function, and ending MS forever. STOPPING MS Novartis International AG announced that oral FTY720 (fingolimod) significantly reduced relapse rates and slowed disability progression over two years in a large-scale, phase 3 trial in relapsing-remitting MS. According to the company, safety data confirmed a positive benefit-risk profile, and the company plans to seek marketing approval at the end of calendar year 2009. An oral drug was submitted to the FDA for marketing approval in September 2009. In a large- scale clinical trial, cladribine tablets significantly reduced relapse rates and other disease activity in people with relapsing-remitting MS. If the FDA application is successful, it would be the first approved oral disease-modifying therapy for MS. Fast Forward made its first investments in promising agents. This effort to speed the delivery of new treatments to people with MS has already attracted over $20 million in new funding. A small NIH-supported study by Stanford University researchers found that women who breastfed their babies exclusively (without giving supplemental bottles) for at least the first two months post-partum were less likely to have an MS relapse than those who did not breastfeed or who did not breastfeed exclusively during the first two months. Multiple previous studies have documented that smoking cigarettes increases the risk of developing MS. Harvard researchers have now tracked hundreds of smokers, ex-smokers and never-smokers, all of whom had MS, for an average of over three years. They reported that disability progressed more quickly in smokers. Early, small-scale trials are underway or getting started to test the potential of a special type of adult stem cell found in the bone marrow, called mesenchymal stem cells. Although these cells have the potential for both turning down MS immune attacks and stimulating nervous system repair, it's still too early to know whether this approach will prove safe and beneficial. The first large-scale clinical ("phase II") trial of the sex hormone estriol in MS, funded by the National MS Society and especially its Southern California chapter, along with the NIH, continued to recruit women with MS to participate, expanding the number of centers to 16 across the US. The two-year trial could lay the groundwork for a larger, definitive trial that could lead to a new treatment option for women with MS. REVERSING MS DAMAGE/RESTORING FUNCTION In response to reports that a phenomenon called CCSVI (chronic cerebrospinal venous insufficiency, a dysfunction of brain blood flow and/or blood drainage) may contribute to nervous system damage in MS, the Society invited investigators to apply for grant funding and created an accelerated review process to explore this lead. If confirmed, this may open up new research avenues into the underlying pathology of MS and new approaches to therapy. The Society gathered together 70 members of the four international Promise: 2010 Nervous System Repair Teams to share progress and plan next steps to speed clinical trials of therapies to protect and reverse neurological damage. Each team reported impressive progress, with two of the teams about to launch new, small-scale clinical trials of different types of stem cells, with separate funding. (http://www.nationalmssociety.org/research/research-news/news-detail/index.aspx?nid=758) After showing benefits for temporarily improving walking speed in all types of MS in two phase 3 clinical trials, an advisory committee for the FDA recommended marketing approval for Acorda Therapeutics' fampridine. If approved, this oral drug would be the first approved specifically for managing MS symptoms. The National MS Society funded early stage studies in the development of this drug. Two groups funded by the Society reported findings on nerve tissue injury and repair that add important information needed to stop MS progression and develop nervous system repair strategies. Mayo researchers found two enzymes that may serve as markers of progressive MS and nerve fiber injury, and investigators at Mount Sinai School of Medicine (NY) reported that a different enzyme is essential for replenishing myelin-making cells that are depleted by MS. ENDING MS FOREVER The Society launched a genetics study that should identify most of the common genes that contribute to making people susceptible to developing MS. In the short run this should set us up to discover new disease pathways that can be targeted for therapy. In the longer run, this should provide a map for preventing MS. Researchers at the University of Buffalo, New York and Italy reported two studies that add to growing findings linking the Epstein-Barr virus (EBV) with multiple sclerosis. One study suggested a link between EBV exposure and the loss of nerve tissue, while the other explored interactions between a person's genes and EBV. For the first time, researchers in the UK and Canada found evidence of a direct interaction between vitamin D and a common genetic variant, the presence of which increases the risk of developing MS. The research highlights the importance of studying the interaction of genes and the environment to search for the underlying triggers of this complex disease. For details on the studies mentioned visit: http://www.nationalmssociety.org/research/index.aspx About Multiple Sclerosis Multiple sclerosis, an unpredictable, often disabling disease of the central nervous system, interrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 400,000 people in the U.S. and over 2.1 million worldwide. Each hour, someone is newly diagnosed with MS. About the National Multiple Sclerosis Society The National MS Society addresses the challenges of each person affected by MS through funding cutting-edge research, driving change through advocacy, facilitating professional education, collaborating with MS organizations around the world, and providing programs and services designed to help people with MS and their families move their lives forward. The Society is dedicated to achieving a world free of MS. Join the movement at www.nationalMSsociety.org. About Fast Forward, LLC Fast Forward, LLC is a nonprofit organization established by the National Multiple Sclerosis Society in order to accelerate the development of treatments for MS. Fast Forward will accomplish its mission by connecting university-based MS research with private-sector drug development and by funding small biotechnology/pharmaceutical companies to develop innovative new MS therapies and repurpose FDA-approved drugs as new treatments for MS. For more information visit: www.fastforward.org For Further Information and Interviews Contact: Arney Rosenblat/212 476-0436
Arneyrosenblat@NMSS.org
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Hope and Elation - Frustration and Anger - Fear and Loathing: The Contrasting Emotional Responses to the Revolutionary Discoveries in MS Made by Dr Za My thanks to Rusty Patterson for providing me with the following article that you should all read. By Dr. Ashton Embry The beautifully crafted, CTV documentary on the astounding findings of Dr Zamboni and his team for multiple sclerosis has hit the MS community like a tidal wave and has evoked a variety of emotional responses. Most people with MS see CCSVI as a huge breakthrough for understanding and treating MS and had an initial feeling of unbridled elation that finally there was some real hope for an effective treatment on the horizon. I expect most people with MS thought "I have to get my veins checked out!", even before the credits rolled on the Zamboni documentary. Such a reaction is completely understandable. Dr Zamboni's research leaves very little doubt that most people with MS have impaired venous flow from the brain and that such a problem is caused by narrowings and outright blockages in the main veins which drain the brain. To anyone with a semblance of objectivity, this is a "no drainer". I might note that small studies in Poland and at both Stanford and the University of Buffalo in the USA have already confirmed these findings. The University of Buffalo is now doing a very large study to add further confirmation. I would be willing to bet the farm that this study will validate Dr Zamboni's findings and, most importantly, it will silence the vocal skeptics, many of whom are neurologists with a blatant conflict of interest regarding the emergence of a potentially effective, non-drug treatment. I have noticed from discussions with numerous persons with MS over the past few weeks that the initial feelings of excitement and hope have been replaced in many cases by anger and frustration. This has come about because everyone is finding it impossible to get an MRV to determine if they indeed have venous blockages. In Calgary, one person I was speaking with called every private imaging clinic and got no where. The receptionist at each clinic simply read a prepared response they had gotten from Alberta Health that there is not enough evidence to warrant such a scan. I quote from a November 26 th email from the manager of one clinic "Until we get further instruction . we don't feel that ethically we can institute these scans for patients". Always nice to know the Alberta government is out there making sure persons with MS do not find out if they have a serious venous problem or not. I have spoken to a few dozen persons with MS and each one expressed their burning desire to find out if CCSVI affects them and if so, how badly. And each one was very angry and frustrated that there was no way they could get such an important test done. The fact that the government substantially contributed to the problem only made them angrier. When it comes to fear and loathing, I expect these feelings are being harboured by other constituencies of the MS community, namely the MS clinicians, researchers, drug companies and charities. Why would such pillars of medicine fear and hate CCSVI? Regarding the clinicians, I have no doubt that they quickly realized that, if relief of CCSVI is an effective treatment, especially for the newly diagnosed, then they would essentially be cut out of the action when it comes to treating MS patients. Once a person was diagnosed with MS they would be immediately be referred to a vascular specialist who would then oversee the person's treatments. It would be "diagnose and adios" for the neurologists, a somewhat ironic development given that is how the neurologists used to treat MS patients before the advent of MS drugs in the mid-90s . As far as the MS researchers go, I can definitely empathize with them. I have been involved in research for over 40 years and I know, if someone suddenly demonstrated that I had spent the last 40 years barking up the wrong tree, I would have a variety of intense, negative feelings. One thing that has never been mentioned is how the Zamboni results demonstrate that the EAE animal model, which is widely used in MS research and upon which 10s of millions of dollars are spent every year, is clearly not suitable and is almost worthless. The mice do not develop CCSVI and thus the EAE model is no better than an animal model in which the mice developed CCSVI but no CNS lesions. A viable animal model for MS needs to exhibit both phenomena - end of story. Such a realization will cause great gnashing of teeth in the wide world of MS research. It is also not a stretch to predict that fear and loathing in the MS research community will turn to anger and I hope Dr Zamboni is prepared for some blistering attacks on both his work and his character. Hell hath no fury like a researcher proven wrong or disenfranchised. Finally, I won't belabour the fears and anger of both the clinicians and the researchers regarding the potential loss of all that drug company largesse and research money which has been a bonanza over the past 15 years. That brings us to the drug companies that supply the drugs that currently are used to treat MS or are in development. I have no doubt these companies must be having hand-wringing meetings these days to discuss the threat of a potentially effective, non-drug treatment for MS. The boardrooms must reek of fear and loathing when the obvious implications of the Zamboni discoveries are discussed. The bottom line is that there are tens and possibly hundreds of billions of dollars at stake in the foreseeable future and the drug companies are not going to let that kind of serious cash simply disappear without a fight. It is impossible to predict how the companies will deal with this real threat to their bottom lines and stock prices but you know it is not going to be pretty. Finall,y I suspect there is a lot of fear and loathing going on at the national MS societies in the countries with high rates of MS (e.g. Canada). For the MS Society of Canada this has been a public relations disaster which potentially will translate into a loss of revenue. The most obvious, embarrassing aspect of this fiasco is the fact that MSSOC wasn't even aware of the Zamboni research until mid October when they put up on their website a few, pathetic paragraphs on CCSVI that were cribbed from NMSS. They had absolutely no plans to fund any research on CCSVI until the CTV documentary put a gun to their head and they then hastily cobbled together a press release (in which Dr Zamboni's name was mis-spelt) and issued a call for CCSVI research proposals. The big question is why, with their blue-ribbon scientific advisory board, did MSSOC have no clue about CCSVI when papers on the subject began appearing in 2006 and major contributions were publicly available in late 2008 and early 2009. Were all their scientific advisors asleep at the switch? Assuming these renowned researchers read the scientific literature, do they have they the ability to recognize a watershed contribution when it crosses their desk? The fact CCSVI went unnoticed by MSSOC for more than a year is cause for serious concern about the competency of the organization in terms of providing reliable and timely scientific information to their members. What other important information is currently out there going unnoticed by MSSOC and its scientific advisors? To sum up, Dr Zamboni's amazing and groundbreaking discoveries have induced a wide variety of emotions in the different factions of the MS community. Such emotions are going to make it even harder for his findings to be properly tested and, if proven to be correct, to be incorporated into clinical practice. Regardless, it is important to realize that such strong emotions exist and to be cognizant of the different and somewhat antagonistic views and goals of the two groups that comprise the MS family - those that live with MS and those that live off MS. article can be found here Posted by Stuart at 9:04 AM
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Buffalo Neurological Imaging Center is doing testing on CCSVI and is accepting applicants. If you are interested. Fill out the on-line application. CTEVD/CCSVI STUDY Thank you for your interest in the Combined Transcranial and Extracranial Venous Doppler (CTEVD) Evaluation in MS and related Diseases study. Chronic cerebrospinal venous insufficiency (CCSVI) is an ongoing problem when blood from the brain has difficulty flowing properly to the heart due to blockages or stenoses (narrowing of the veins). The main goal of the CTEVD study is to investigate the prevalence (frequency) of CCSVI in patients with multiple sclerosis (MS) when compared to healthy controls (HC) and controls with other neurological disorders (OND). Another important aim of the CTEVD study is to investigate the relationship between CCSVI and clinical, magnetic resonance imaging (MRI) and environmental- genetic outcomes in MS patients, HC, and controls with OND. We have received an enormous response to recent media reports about our study. Due to the number of applicants and limited funding we are providing you some detailed information on our study and requesting some details about you in order to assist us in evaluating your eligibility to participate. Currently, enrollment will be closed until late January 2010 in order to evaluate initial study results on first 500 enrolled subjects. If you would like to be considered for this study or any future studies, please follow the instructions below. 1) Applications will be processed according to our study criteria and in the order they are received. 2) Please only use the ctevd@bnac.net email address to communicate with our study. 3) If you decide to write to the email address above, you will receive a response with instructions to complete an online questionnaire. 4) Once the team evaluates the information you provide in the questionnaire, you will be contacted to inform you if you are eligible for further screening. Please note this is a research diagnostic study - there are no treatment interventions planned in this study. The study procedures include doppler/ultrasound testing, blood collection, a clinical examination and completion of an Environmental Questionnaire. Interested participants can also have an MRI performed. A subset of these individuals with also have an MRI of the neck veins. You must: - Be an adult or child with confirmed MS - Adult MS must be supported by fulfillment of the McDonald criteria - Pediatric MS must be supported by fulfillment of Krupp and International criteria - Have a disease course of Clinically Isolated Syndrome (CIS), Relapse-Remitting (RR), Secondary-Progressive (SP), or Primary-Progressive (PP) supported by the Lublin criteria - Have normal kidney functioning as supported by lab work performed within 2 months of MRI testing (within 2 weeks if other criteria are met) - Be able to communicate effectively - Pass screening for MRI and contrast agent safety - Be able to travel to Buffalo, NY to complete testing (we only have this site for testing) You must not: - Be in active relapse or have steroid treatment in 30 days prior to MRI - Have any vascular or heart problems - Have severe cognitive impairment/dysfunction - Have a history of drug or alcohol abuse, cerebrovascular disease or cerebral vascular malformations, head injury or brain trauma - Have any vascular malformations (Bechet Disease, Budd Chiari Syndrome, Congenital vascular malformations, Deep Vein Thrombosis within the past year, Chronic Venous Insufficiency of the lower limbs) - Be pregnant or expect to be pregnant during participation If you are writing on behalf of a relative or friend, please instruct him/her to contact us directly at this email address: ctevd@bnac.net Please do not make any travel plans until your enrollment is confirmed. All testing procedures are paid for by BNAC. However, there is no financial compensation for your participation, or travel and related expenses. No Doppler or MRV reports will be given to participants or their physicians. Research MRI reports of the brain can be made available upon request. If you think you are eligible to participate and are willing to travel to Buffalo, NY for testing, please take a moment to complete an online questionnaire which has been designed to assist our team in determining your eligibility as well as providing valuable clinical data for your research record. The questionnaire can be accessed by going to: https://vovici.com/wsb.dll/s/8727g41a07 Due to the overwhelming response, it will take some time to contact you for any next steps. But you can get the process started by completing the online questionnaire. Thank you in advance for your patience.

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

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