Multiple System Atrophy Awareness

Spreading awareness worldwide

Multiple System Atrophy Awareness Month 2012

FOR IMMEDIATE RELEASE

Contact:  Pam Bower

pbower@accesscable.net

 

Kim Jackson

kim@kimjacksonpr.com

Download a copy of this press release here

Facebook Group Fights to Create Awareness for Rare Neurological Disease;

Declares March as Multiple System Atrophy Awareness Month

ANYWHERE, U.S. (March 1, 2012)—There are no Hollywood celebrities linked to MSA (Multiple System Atrophy)—just more than 3,000 fans known on Facebook as “Miracles for MSA,” whose goal is to draw attention to this rare, currently incurable disease. As the movement continues to spread and grow rapidly worldwide thanks to the power of social networking and social media, this group continues to designate March as Multiple System Atrophy Awareness Month, in order to increase public awareness and encourage research activities.  Many towns across the U.S. have made proclamations that March is Multiple System Atrophy Awareness Month, due in part to the grassroots efforts of those affected by this rare disease.

 

Multiple System Atrophy is a neurodegenerative disorder that affects many of the autonomic body systems that people take for granted. The symptoms can occur in any combination, from loss of balance and coordination, fainting and dizziness due to severely low blood pressure, bladder and bowel issues, speech and swallowing difficulties, sleep disturbances, breathing problems, and rigidity and tremors similar to Parkinson’s disease or ALS.

 

“Multiple System Atrophy (MSA) is a rare disease,” said Cindy Corminy of Vanderbilt University Medical Center, one of the hubs for research for this and other neurological diseases. “But, if your loved one has it, it’s no longer rare to you. Help us find a miracle for MSA.”

 

This is now the third year of MSA Awareness month activities, The Miracles for MSA Facebook page now has more than 3,000 fans. (http://www.facebook.com/Miracles.for.MSA) The vast majority are from the U.S. but there is also representation from Canada, UK, Australia, South Africa, and many European nations. Each year more awareness is raised and efforts are spreading worldwide because of the encouragement and support of participants in this forum.

 

This year a film about Multiple System Atrophy and its direct effects on a family in South Dakota has been entered in the Neuro Film Festival sponsored by the American Academy of Neurology. The Miracles for MSA community has come together to try to help make this film the fan favorite in the voting. Should the film win this distinction it will mean much increased publicity for Multiple System Atrophy and much needed awareness among the 10,000 attendees who will be present at the American Academy of Neurology’s 64th Annual Meeting on April 22, 2012 in New Orleans, where the winning film will be screened. At press time, the MSA film was in first place, with voting closing on March 8.

 

 

-more-

 

March is MSA Awareness Month, page two

 

“I had just run 42 km when a few months later I was diagnosed with MSA, now I cannot run a flight of stairs,” said Brenda Paquet, living with MSA in Ottawa, Canada. “I am always trying to raise awareness as it is only through awareness a cure will be found. It is my first thought when I open my eyes and when I close them at the end of the day…there must be something that will work. I feel I was given a death sentence, not for doing anything wrong but for doing everything right. Currently I am in the race of my life, to find a cure for MSA.”

 

Previously known by such names as Shy-Drager Syndrome, sporadic olivopontocerebellar atrophy and striatonigral degeneration, MSA is not considered to be hereditary. It generally affects middle-aged men and women, advancing rapidly, with progressive loss of motor skills, eventual confinement to bed, and death.  It is very rare for someone to live 15 years with MSA. There is no remission from the disease and currently no cure. The current lack of awareness of MSA leads to misdiagnosis and mistreatment, as well as misdirected research funding that could be better applied to the MSA effort.

 

“Ann was first diagnosed with MSA in 2003 and has been fighting to stay active but is in a slow, steady decline because Multiple System Atrophy is a progressively, degenerative disease,” said her husband Roger, from their home in Westminster, Mass. “One of the symptoms of the disease is neurological orthostatic hypotension (NOH). We have been advocates as patient and caregiver for a new medication, Droxidopa, which combats the symptoms of NOH. We appeared at an FDA hearing in February to explain Ann’s success with the medication during the research phase. She has been in the research trial on the medication since August, 2008. If final approval is given for the medication the trade name will be Northera.”
Approximately 50,000 Americans are now reported to have MSA (possibly more). A recent epidemiological survey, reported on the European MSA Study group website, has found MSA to have a prevalence rate of 4.4 people per 100,000.

 

Those are the clinical facts of MSA. But they don’t begin to address the havoc the disease wreaks not only on patients but also on family members, caregivers and friends, who watch their once vibrant loved one gradually lose all those abilities once taken for granted. It is the goal of all those who have been affected in some way by this disease to draw attention to it, not only during March but also throughout the year.

 

“Novel research to diagnose this debilitating illness sooner and to separate it from Parkinson’s and other disease is critical for creating a better future for MSA patients,” said Dr. Anna Langerveld, who owns Genemarkers of Kalamazoo, MI. “An important first step was taken in 2009 with a pilot study to define a genetic signature of MSA in patient blood samples. The initial work was a collaboration between Genemarkers, Dr. Charles Ide of Western Michigan University and Dr. David Robertson of Vanderbilt University Medical School. Efforts have begun to design and fund a new study to extend and improve these findings. Success will require continued scientific and financial participation from all interested groups. Our passion and the data generated in the ongoing work will expand awareness of MSA, draw more scientists and physicians into our efforts, and begin to bring hope to MSA patients and caregivers.”

 

For more information on Multiple System Atrophy, including links to MSA organizations and research groups worldwide please visit http://www.MSAawareness.org

 

To join the “Miracles for MSA” Facebook page, visit http://www.facebook.com/Miracles.for.MSA

 

~~~~~~~End of Press Release ~~~~~~~~
COMMENTS:

TO ORGANIZATIONS SUPPORTING MSA PATIENTS: We would like to encourage all MSA supporting organizations worldwide to send out a press release announcing March as Multiple System Atrophy Awareness Month.

Please feel free to make use of this free sample Press Release above announcing MSA Awareness month and change it to suit your organization and include quotes from patients, caregivers and researchers in your country. You can download a copy in word format from http://www.msaawareness.org/wordpress/wp-content/uploads/2012/03/March-MSA-Awareness-Month-2012.doc
We do ask that along with including links and information about your MSA organization that you also include the links to the grassroots MSA websites Miracles for MSA and MSAawareness.org because we want to reach everyone affected by MSA and have them join us here to make our voices even louder next year. Neither of these sites is affiliated with a charity or for-profit. They represent people affected by MSA from many countries who want to spread awareness and encourage collaboration and perhaps one day a cure.  Together we can make Miracles happen for MSA! Thank you!

 

TO INDIVIDUALS HOPING TO RAISE MORE AWARENESS IN YOUR COMMUNITY:  Please make use of this FREE sample Press Release above announcing MSA Awareness month and send it out to your local media. You can download a copy in word format from http://www.msaawareness.org/wordpress/wp-content/uploads/2012/03/March-MSA-Awareness-Month-2012.doc Please remember to change the following details before you send it out:

1. Change the contact names at the top to include your own name or a contact from your organization (you can remove Pam and Kim).

2. Change the location from “Anywhere, US” to be your own City/town and Country — remember this is not just for the United States as MSA knows no boundaries

3. Feel free to replace any of the quotes from patients and caregivers and include your own quotes.

4. If you have contact with MSA researchers in your local area be sure to ask them for a quote about MSA to include. If you don’t have a medical contact feel free to keep the quotes we included this year from the medical/research community in the U.S.

5. Please leave the links to Miracles for MSA and MSAawareness.org because we want to reach everyone affected by MSA and have them join us here to make our voices even louder next year.

6. Please remember to include links and a description about your local MSA organization so that your organization will also be highlighted.

7. You may also wish to highlight another facebook group or other online group, please feel welcome to do so.

Together we can make Miracles happen for MSA!

 

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Some Recent Progress in Therapeutics of MSA

April 15, 2011

The clinical study on the drug Rifampicin for MSA is now open and accepting patients who qualify.

http://rarediseasesnetwork.epi.usf.edu/ARDCRC/studies/6102.htm

How to participate

In order to participate in a study, you must personally contact the study coordinator of any of the participating institutions by phone or by e-mail. Please use the information below to inquire about participation

See the website for more information:

http://rarediseasesnetwork.epi.usf.edu/ARDCRC/studies/6102.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”


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March 4, 2011

Update from Phillip Low, MD

There is significant activity in the areas of diagnosis and treatment trials of early MSA.  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 – Phillip Low MD) and a Autonomic Disorders Rare Disease Consortium (U54 NS0 65736; Principal Investigator – David Robertson MD). We are about to commence our study “Double blind placebo controlled study of Rifampicin in Multiple System Atrophy,”  Principal Investigator, Phillip Low; Co-Prinicipal Investigators: Sid Gilman, David Robertson within a month or so. The goal of this trial is to test if Rifampicin will prevent progression of the disease. NIH funding has been limited so that private funding has been extremely important. My program is most appreciative of the financial support of Lily Shih and her father Mr Shih, in supplementing this treatment trial.

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

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Note:  If anyone would care to make a donation directly to Dr. Low’s research project for the study of the drug Rifampicin in MSA patients please contact:

Mayo Clinic
Contact: Scott Arthur
Department of Development
200 First Street SW
Rochester, MN 55905
Phone: 507-538-7564 Fax: 507-284-1550
E-mail: arthur.scott@mayo.edu

Be sure to mention the “Rifampicin double-blind study” to ensure your gift goes to the right place.

To donate online go to:

Mayo Online Donations

Enter the amount and change the designation to: Other Designation

Beside Other, please type in: “Rifampicin double-blind study”

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April 26, 2010

Some Recent Progress in Therapeutics of MSA
by Phillip 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 – Phillip Low MD) and a Autonomic Disorders Rare Disease Consortium (U54 NS0 65736; Principal Investigator – David Robertson 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, Phillip Low; Co-Prinicipal Investigators: Sid Gilman, David Robertson. 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.

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TOP TEN THINGS YOU NEED TO KNOW ABOUT MULTIPLE SYSTEM ATROPHY

February 9, 2011

TOP TEN THINGS YOU NEED TO KNOW ABOUT MULTIPLE SYSTEM ATROPHY

These are things not normally highlighted in traditional literature about
Multiple System Atrophy. This list was compiled from the collective
experience (since 1995) of hundreds of members of the shydrager online
support group for MSA founded by Vanderbilt University Autonomic Dysfunction
Center staff and currently hosted at

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

Please feel welcome to join and browse through the archives of posts since 2000 and to ask any questions of the over 1500 members.

1. PREVENT INFECTIONS: MSA patients often register a body temperature that is a
degree or more below normal. Because of this a fever may not be detected. Any
sudden worsening of symptoms or confusion could be a sign of infection. An even
lower temperature than the normally (MSA) low temperature can also be a sign of
infection. Be vigilant about preventing and detecting all types of infections.
Urinary tract(UTI) and lung infections(PNEUMONIA) are very common. Stay well
hydrated (64 oz fluid per day) to prevent urinary tract infections. Stay dry
and shift weight often to prevent skin pressure sores. Swallow carefully, avoid
choking and aspiration. Puree foods when swallowing becomes difficult. Get
speech and swallowing therapy to avoid aspiration pneumonia.

2. WATCH FOR SLEEP AND BREATHING PROBLEMS: Sleep and breathing problems are
very common in MSA patients. Sleep apnea (momentary lapses in breathing),
respiratory stridor (noisy breathing), REM behavior disorder (shouting and
acting out dreams) and excessive daytime sleepiness can be among the earliest
symptoms of MSA. Sleep apnea is very serious and can lead to sudden death
during sleep. Ask your bed partner if you snore, breathe loudly in your sleep,
talk in your sleep or act out your dreams. Ask to be referred to a sleep
specialist for a sleep study, often this can be performed in your own home.
Not getting a good night’s sleep can make other MSA symptoms seem worse both
for the patient and the caregiver. Sleep and breathing problems can be easily
treated with a CPAP or Bi-Pap – this is a mask with pressurized air worn at
night.

3. BE AWARE OF SITUATIONS THAT CAN AFFECT BLOOD PRESSURE:
Blood pressure can DROP suddenly(hypotension): a. After getting up in the
morning – drink a large glass of water before getting out of bed to raise your
blood pressure. b. During a bowel movement – use a foot stool in front of the
toilet to keep blood pressure up. c. After a large meal – eat 5 or 6 small
meals instead of larger meals d. After standing in one place for a long time -
sit whenever possible.
Blood Pressure can SPIKE UPWARD suddenly(hypertension): a. When lying flat
(supine) during sleep – raise the head of the bed 4 to 6 inches higher than
the foot of the bed at night to prevent this. Further note on blood
pressure: If a patient’s blood pressure is too high laying down then simply
sitting them up can bring it back down.

4. BE CAREFUL OF SURGERY/ANESTHESIA: If an MSA patient is to have any dental
work or surgery, a local anesthetic should be the preferred choice if
possible. However beware of local anaestethics with adrenaline or derivatives.
Ensure that the dentist or surgeon and anesthesiologist know that MSA affects
the autonomic nervous system. The MSA patient must be well hydrated via IV
before and during surgery to maintain a safe blood pressure. Another note on
surgery: Prostate surgery should only occur if the urologist and neurologist
have had a consultation with each other.

5. BE CAREFUL WITH OVER-THE-COUNTER COLD/FLU/ALLERGY MEDICATIONS: Many of these
medications contain pseudoephedrine that can affect the heart and raise blood
pressure, leading to stroke. They also may interact with prescribed
medications. Be very careful and consult your doctor before mixing any
medications, including over-the-counter remedies or even vitamins.

6. PREVENT FALLS: Preventing falls is very important, if you fall and break a
bone you may become bedridden and more prone to infections. When it becomes
appropriate, use a cane, walker or wheelchair. Install grab bars in the
bathroom, use a raised toilet, use a shower chair or bench, use a hoyer lift
for transfers.

7. AVOID EXTREME HEAT OR COLD: MSA can affect the body’s ability to sweat and
to maintain a proper core temperature. It’s important to stay cool during hot
or humid weather and stay warm during cooler weather. Also avoid very hot baths
and showers.

8. EXERCISE! It’s important to maintain strength and flexibility for as long as
possible. Do range of motion exercises and any gentle exercise that can be done
when sitting. Water exercises are easy to do and very helpful. Practise speech
exercises along with the other exercises to help maintain strength and clarity
of voice for as long as possible. Ask for physical and occupational and
speech therapy as these are all known to be beneficial to MSA patients.

9. PREPARE FOR EMERGENCY ROOM VISITS: Keep a short description of your medical
history, a description of MSA, and your most recent medications list handy so
you can take it with you to any new doctors’ appointments, hand it over in an
emergency room, give it to caregivers, etc. If you are in any of those
situations, it’s much easier to have something pre-prepared, especially if
you’re talking to people who have never heard of MSA.

10. BE READY TO ADVOCATE AND TO COORDINATE A TEAM OF DOCTORS: Be ready to
“advocate” with your doctors, or ask a trusted friend, family member or
caregiver to play this role. MSA is a complex disorder and not every doctor
will have heard of it, find a doctor you trust who is willing to learn. There
is literature available and there are known MSA expert neurologists who can
act as consultants. At each appointment try to focus on 1 or 2 concerns to get
them addressed adequately. Have a buddy with you who will make sure you’re
heard! Often your general practitioner can help play the coordinator role by
referring you to other experts such as a neurologist, internist, cardiologist,
urologist etc.

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