Donna wanted to post this to the group - MSA info

[Guest guest]

MSA RESEARCH NEWS:

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April 26, 2010

Some Recent Progress in Therapeutics of MSA

by Low, MD

The diagnosis and characterization of MSA has significantly improved over the

past decade. There is also a better understanding of the mechanisms underlying

this disease (pathogenesis). Progress has been facilitated by a combined effort

of the National Institute of Health through NINDS which has funded a program

project specifically in MSA (P01 NS4 4233; Principal Investigator �

Low MD) and a Autonomic Disorders Rare Disease Consortium (U54 NS0 65736;

Principal Investigator � on MD). Progress is also facilitated by

the activities of patient support groups.

For a disease for which there is only treatment of symptoms, we should have 3

treatment trials for MSA this year. Underway is a study entitled " A

Multi-centered, Randomized, Double-blind, Placebo-controlled Clinical Trial to

Assess the Efficacy, Safety, and Tolerability of Rasagiline Mesylate 1 mg in

Patients with Multiple System Atrophy of the Parkinsonian Subtype (MSA-P) " , by

Teva Pharmaceutical Industries, Ltd.

A study that is about to commence entitled: " A Phase IIA, multi center,

double-blind, randomized, placebo-controlled, parallel-group 12 month study to

assess the efficacy, safety, tolerability and pharmcokinetics of AZD3241 in

patients with Multiple System Atrophy " also aims to affect the natural history

of the disease.

A third study " Double blind placebo controlled study of Rifampicin in Multiple

System Atrophy, " Principal Investigator, Low; Co-Prinicipal

Investigators: Sid Gilman, on. The goal of these trials is to test

if these drugs will prevent progression of the disease.

These studies are not likely to help advanced MSA. Indeed the studies will only

be open to patients with very early MSA. The importance of these studies is that

they will likely lead to additional and better treatments in the future. Studies

with intravenous gamma globulin and stem cell therapy are in the exploratory

stages. I stress that it is important to maintain a realistic perspective. These

studies should not be interpreted as reason for optimism for a cure, but is

certainly ground for hope for the future.

Donna wanted to FW this email to the group but it didn't work - so I cut/paste

for you all.

RESEARCH UPDATE:

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October 2, 2010

by Pam Bower

Moderator of shydrager, the online MSA support group at Yahoo Groups

http://groups.yahoo.com/group/shydrager

Email: pbower@...

From notes taken from doctor's presentations at the Annual MSA Conference held

in San Diego .

For news of future MSA conferences see http://www.shy-drager.org

1. Rasagiline(Azilect) - a transgenic mouse model of MSA showed that rasagiline

reduced nigral striatal and cerebellar cell loss in a mouse model of MSA and can

be considered a promising disease-modifying candidate for testing in humans with

MSA. A clinical trial is underway to test this. Volunteers are needed. There are

51 clinical study sites in 12 countries. 140 patients are needed. Participation

in an imaging substudy will be offered to enrolled subjects at selected sites.

To be included in the Rasagiline for MSA study you must be:

- greater than 30 years old with a diagnosis of possible or probable MSA of the

Parkinsonian subtype (MSA-P)

- less than 3 years from documented MSA diagnosis

- anticipated survival of greater than 3 years in the opinion of the

investigator

- willing and able to give informed consent

There will be investigator evaluations at the screening visit and study - weeks

0, 12, 24, 36 and 48

Phone visit and assessment between study visits at weeks 6, 18, 30 and 42.

See list of study sites at:

http://www.clinicaltrials.gov/ct2/show/NCT00977665?term=rasagiline+msa & rank

2. There is a clinical trial starting soon for Rifampicin!

Go here to register in the patient database to be notified of when the trial

will start:

http://rarediseasesnetwork.epi.usf.edu/ARDCRC/studies/index.htm

" 6102 - An Oligo-centered, Randomized, Double-blind, Placebo-controlled Clinical

Trial to Assess the Efficacy, Safety, and Tolerability of Rifampicin in Patients

with Multiple System Atrophy "

MSA AWARENESS NEWS:

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1. October 3rd is World MSA Day!

MSA Groups around that world have declared an international day of awareness for

Multiple System Atrophy to be held annually on October 3rd.

Read about it at:

http://www.world-msa-day.org

View the World MSA Day promotional video (English version) on YouTube at:

2. " Tim's Shoe " Raising Awareness for MSA!

Where is Tim's Shoe???? - not on Tim's foot!

It started out as a practical joke to steal Tim McNutt's shoe and send it around

the country and then post pictures of it on Facebook posed in front of various

city landmarks. But when Tim's friends heard about how this website made MSA

patient Pearl laugh they turned this joke into a positive and fun way to

raise awareness about MSA that is taking the country by storm.

Here is a news article written about " Tim's Shoe " .

http://www.cortezjournal.com/main.asp?SectionID=1 & SubSectionID=1 & ArticleID=10786\

& TM=71374.11

View a video about " Tim's Shoe " on YouTube:

Follow " Where is Tim's Shoe???? " on Facebook:

http://www.facebook.com/pages/Current-Location-Unknown/Where-is-Tims-Shoe/348809\

933762

You can request to host Tim's Shoe by emailing Tim's Shoe's caretaker Darlene

Ogden darlene_ogden@...

3. " Miracles for MSA " has 2000 members!

This Facebook group is becoming a popular meeting place for sharing ideas and

activities about raising MSA Awareness. If you have ideas on raising awareness

and/or funds for any MSA charity please join us there.

http://www.facebook.com/pages/Miracles-for-MSA/138909258573

4. Photos from the MSA Conference held in San Diego , California on October 1st

and 2nd.

http://www.facebook.com/album.php?aid=253515 & id=707756399 & l=9f5db08991

A special guest appearance was made by " Tim's Shoe " and he also celebrated World

MSA Day with flags from the countries of the conference attendees.

5. Online Support Group for MSA still going strong after 10 years

The online support group for MSA called " shydrager " is still going strong after

10 years on Yahoo! Groups. The group now has over 1600 members from all over

the world who share coping tips, information and resources daily.

We are grateful for the vision of Dr. on and his colleagues at

Vanderbilt University for starting the group back in 1995 and hosting it on

their university server until 2000.

Because MSA / Shy-Drager Syndrome is so rare it is so important to reach out to

talk to others around the world and know you are not alone in your struggle.

Many of the group's members are former caregivers who have remained with the

group and continue to pass on their vast knowledge on the subject of MSA.

Collectively this group truly has the most expertise on Multiple System Atrophy

you could find anywhere in the world. The richness of the friendships formed

and our diverse backgrounds makes this group unique. Please feel welcome to

join us and share your journey with MSA.

To join the group go to:

http://groups.yahoo.com/group/shydrager

Any problems with joining please contact the moderators at

Shydrager-owner

6. New MSA Pamphlet from Parkinson Society Canada

See: http://tinyurl.com/PDCANADA-MSA

This new pamphlet is an excellent addition to the other MSA resources already

available to us. Please share these informative pamphlets with doctors and

family and friends to make them aware of MSA.

Other good resources:

http://www.acnr.co.uk/pdfs/volume3issue6/v3i6reviewart1.pdf

http://emedicine.medscape.com/article/1154583-overview

http://www.rarediseases.org/programs/mult_sys_atrophy_brochure.html

http://www.msaweb.co.uk/msaguide.htm