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Multiple System Atrophy News - April 2011

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  • Pam Bower
    Multiple System Atrophy News - April 2011 1. Clinical Trial for Rifampicin now recruiting MSA patients 2. Save the Date for the Annual SDS/MSA Patient Family
    Message 1 of 1 , Apr 22 4:03 PM
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      Multiple System Atrophy News - April 2011
       
      1. Clinical Trial for Rifampicin now recruiting MSA patients
      2. Save the Date for the Annual SDS/MSA Patient Family Conference
      3. CurePSP webinars available online
      4. Sarah Matheson Trust (UK) gets new name and website
      5. Faces of MSA Campaign
      6. Upcoming Events
      7. March 2011 MSA Awareness Month highlights
      8. World MSA Awareness Day October 3rd

       
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      1. Clinical Trial for Rifampicin now recruiting MSA patients

      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.

      To find out more about the clinical trial go to:
      http://rarediseasesnetwork.epi.usf.edu/ARDCRC/studies/6102.htm


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      2. Save the date for the Annual SDS/MSA Patient Family Conference

      The date for this year’s event will be October 28th to 29th in Dallas , Texas .  Note this is a free event and always fun and informative.

      Details on the hotel venue are still being worked out.  Please watch the SDS/MSA Support Group website for more details:  
      http://www.shy-drager.org/sds-msa-events

      Also now find them on Facebook:
      http://www.facebook.com/#!/pages/Sdsmsa-Support-Group/160268974011093


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      3. CurePSP Webinars Available Online

      A series of informative webinars on PSP, MSA and related Parkinson Plus disorders have been recorded and made available at the CurePSP organization’s website. Don’t miss this great resource.
      See:
      http://www.psp.org/news-and-events/webinars.html


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      4. Sarah Matheson Trust (UK) gets new name and website

      The former Sarah Matheson Trust headquartered in London UK has been renamed the Multiple System Atrophy Trust.  They have also launched a brand new website at http://www.msatrust.org.uk

      Find them also on Facebook at
      http://www.facebook.com/pages/Multiple-System-Atrophy-Trust/182824945086605

      For many years they have published “SMART News”, a newsletter full of great information on MSA.  You can find archived copies of SMART News going back to 2002 at this link:
      http://www.msatrust.org.uk/living-with-msa/how-the-trust-can-help-you/magazine/magazine-archive



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      5. Faces of MSA Campaign

      NOTE: This campaign is open to all, you do not have to be from New Jersey USA to participate.

       
      Multiple System Atrophy (MSA) is a rare neurological disorder that follows a progressive and terminal course. Support, awareness, and research are needed to help those afflicted with this deadly disease.

      One of the most significant ways to spread the word is to personalize patient encounters with these disorders. It is important for others to see the real people that face a daily struggle with the symptoms these diseases cause.

      As part of a support, awareness, and fundraising campaign in New Jersey we would like to share the Faces of MSA

      Please consider submitting up to two or three photos of you or a loved one diagnosed with a rare neurological disease, along with some basic information you may opt to share. The most powerful images would include a photo in younger, healthier times along with a recent photo, but the choice of what you share is yours. We can, and should, include those currently struggling with the disease as well as those who lost the battle.

      A photo slide show will be created of all submissions to show as a backdrop at the charity function for MSA on May 15 in New Jersey . Later this album will be available at YouTube and may be shared links at related organization web sites and social network pages. We can continue to grow this album after the event in order to continue awareness efforts.

      Please consider this meaningful way to spread awareness while paying tribute to a loved one. Let’s join forces to fight these devastating, debilitating diseases.

      To find out more please see this website on Facebook
      http://www.facebook.com/pages/Multiple-System-Atrophy-Awareness-Month/177821
      185595030#!/notes/movement-for-support-awareness/faces-of-msa/186917588013595

      Or contact Cynthia Roemer at Cynthia.roemer@...


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      6. Upcoming Events

      Several MSA events are happening during the months of May and June.

      May 7: West Coast Family Conference
      Sponsored by CurePSP
      Location: Los Angeles , California USA
      See: http://www.psp.org/news-and-events/educational-conferences.html

      May 14: Smolenski MSA Research Fund annual fundraiser
      Sponsored by Smolenski MSA Research Fund
      Location: Grand Rapids , MI USA
      See: http://www.smolenskimsaresearchfund.com/Event.html

      May 15: Feeding Frenzy Family Picnic for Multiple System Atrophy Support
      Sponsored by: Movement for Support & Awareness
      Location: Wall , New Jersey USA
      See: http://cjphc.org

      May 22: Dance Fundraiser for Multiple System Atrophy
      Location: Paducah , Kentucky USA
      Proceeds to SDS/MSA Support Group
      See: http://www.prweb.com/releases/2011/04/prweb5264484.htm

      Jun 11: East Coast Family Conference
      Sponsored by CurePSP
      Location: New Brunswick , New Jersey USA
      See: http://www.psp.org/news-and-events/educational-conferences.html

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      7. March 2011 MSA Awareness Month Highlights

      This year’s March MSA Awareness Month campaign was a great success. The campaign increased awareness, inspired more local support group activities and fundraisers, and helped forge relationships among MSA contacts worldwide.

      This grass roots campaign aims to motivate others to take up the challenge to get the word out about MSA. We can all do our part simply by speaking up or sending out letters and sharing web links.  All organizations that serve families in need of support are encouraged to use the opportunity generated by the annual March MSA Awareness month campaign to highlight their organization and reach out to the MSA community that they serve.  

      Below are some of the highlights from this year’s effort:

      -  The MSA Awareness petition created in January 2011 has been signed by over 1700 people to date.
      See: http://www.gopetition.com/petition/42198.html


      -  A new website for MSA Awareness was launched in February 2011. There has been a very positive response and over 5000 hits to date.  

      "Multiple System Atrophy Awareness is a portal to resources for Multiple System Atrophy. Highlighting the latest and best information, it aims to pull all available resources together in one easily accessible location so it may be shared by all … spreading awareness worldwide."

      See: http://www.MSAawareness.org


      -  MSA Awareness now also has a Facebook Page.
      Please “LIKE” us on Facebook at:
      http://www.facebook.com/pages/Multiple-System-Atrophy-Awareness-Month/177821185595030


      -  MSA Awareness now also has a Twitter Account.
      Please follow us on Twitter - @MSAawareness http://twitter.com/#!/MSAawareness


      -  In late February the 2011 press release announcing March MSA Awareness month was sent to free online websites.
      See:
      http://www.prlog.org/11325502-march-is-multiple-system-atrophy-awareness-month.html


      -  In March, the SDS/MSA Support Group picked up the press release and created another with their own spin that reached a much wider audience via the paid newswire services.  
      See:
      http://www.prweb.com/releases/2011-MSA-Awareness-Month/03/prweb5145184.htm


      -  Numerous articles and blogs about MSA were generated this year, spreading awareness in local communities and getting the real human story out to the world.  
      Read a collection of 2011 articles at this link:
      http://www.msaawareness.org/?p=782


      -  At least 3 US States and many cities signed official proclamations declaring March Multiple System Atrophy Awareness Month.  View the list and some photos at: http://www.msaawareness.org/?p=836


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      8. World MSA Awareness Day

      What’s next for MSA Awareness?  

      MSA Groups around the world, led by groups in Europe , 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:
      http://www.youtube.com/watch?v=G6iYpkxYEZo




      CALL TO ACTION: All Worldwide MSA groups Unite!

      Please use this opportunity to create more local events and news articles.
      Keep the momentum going for MSA Awareness all year long!

       
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      To subscribe to the online MSA-NEWS please go to http://groups.yahoo.com/group/MSA-NEWS
       
      Or send and email to MSA-NEWS-subscribe@yahoogroups.com

       
       
       

       

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