Multiple System Atrophy Awareness

Spreading awareness worldwide

Updates: Multiple System Atrophy Awareness Month 2013

March 28, 2013

An article about living with MSA by Gary Rose appears in the March/April issue of CurePSP’s newsletter

March 28, 2013

From Vera James:  Coming to the end of March Awareness and before it does end I want to give my thanks to Don Summers.   He has been there for so many of the patients/caregivers giving his knowledge so that they could understand MSA and not feel so alone.    He did this since the 90′s when he led the SDS/MSA Support Group, until he stepped down a few years ago because of his own health issues.   He is a true warrior for MSA!    If anyone wants to send Don Summers a card or letter,  they can mail it to:  Don Summers P.O.Box 279 Coupland, TX 78615

March 28, 2013

March 28 is National Multiple System Atrophy letter writing day!

In recognition of multiple system atrophy awareness month, The MSA Coalition is sponsoring a national letter-writing day on March 28, 2013 to bring awareness to members of Congress issues that are important to this rare disease community.    Find out how to participate.

Note: This page is still available even after March 28th so keep sending in your letters.

March 27, 2013

BLOG: MSA A Daughter’s View by Angelina Cervone

March 26, 2013

Walk raises more than $8000 for MSA

March 26, 2013

News from Vera James:   She received a letter from Senator Fienstein (CA) regarding MSA.   Part of the post:

“You may be pleased to know that on March 4, 2013, California State Senator Bill Emmerson introduced California State Senate Concurrent Resolution 21, which would designate March 2013 as MSA awareness month.   California State Senate Concurrent Resolution 21 passed the California State Senate on March 18, 2013.   It is currently being considered in the California State Assembly.”   View the wording of Resolution SCR 21

March 25, 2013


From Vera James: Just received my flag and the certify note that the flag was flown over US Capitol on March 1, 2013 at the request of the Honorable Edward R.Royce Member of Congress and the MSA Coalition for Multiple System Atrophy March Awareness


 

March 25, 2013

VIDEO: Sharon and Eric Sutton are interviewed about Multiple System Atrophy

March 24, 2013

Blog: MSA Awareness Month Part 2 by Frank Cervone

March 22, 2013

MSA patient Tim Burden was featured on the DIY Network show “Rescue My Renovation”.   The show will be repeated several times in March and April.   View the listing.

March 21, 2013

Reported by Philip Fortier

MICHIGAN RESOLUTION PASSED….

Michigan Representative Sarah Roberts (D-18) called me yesterday to tell me that on a verbal vote, her resolution declaring March as Multiple System Atrophy Awareness Month passed…. I am awaiting the actual language of the resolution and we will have a photo op with the resolution and the representative in the coming days… Will post all details here….. :) YAY – Add Michigan to the List….

March 20, 2013

Blog: Multiple System Atrophy Awareness Month by Frank Cervone

March 18, 2013


From Olga Korbut: “I lost a great friend to MSA. Please read if you like my sport. A couple of years ago I was watching ESPN and saw he passed away.”

Olga Korbut joins the fight against MSA – Article from MSA News – Multiple System Atrophy Trust

March 15, 2013

VIDEO: Family shares man’s experience with Multiple System Atrophy

March 14, 2013

There have been 5000 unique views of our press release announcing March as Multiple System Atrophy Awareness Month.  Please continue to share this link  http://prlog.org/12062758

March 13, 2013

Note from WDKN 1260 AM Country Gospel Talk Radio: “Due to numerous requests from around the world, WDKN will rebroadcast the Power Lunch interview with Bob Summers and Mona Law on Multiple System Atrophy Awareness Month at 11:30 am US CDT on Friday, March 15. The broadcast on this rare fatal neurological disorder has generated more response than any program in the four-year history of the Power Lunch and drew comments from South Africa, Sweden, England, Minnesota, Kentucky, Texas, Michigan and elsewhere from online listeners.”

Go to this link to listen to the program on Friday, March 15 at 12:30 PM Eastern time  = 4:30 PM GMT

March 12, 2013

VIDEO: State of Pennsylvania passes house resolution designating March as Multiple System Atrophy Awareness Month.  Thanks to Tommy Fitzgerald for working with state representatives to achieve this success.  View the video.

March 11, 2013

Reported by Tommy Fitzgerald: “Tomorrow I will be going to Harrisburg, PA in order to observe The Pennsylvania State Representative’s vote on designating March, MSA Awareness month. This is a resolution designed to create awareness to the orphan disease Multiple System Atrophy (MSA). I am presently diagnosed with MSA, and research into this incurable, progressive disease is my only hope. I worked on this project personally, along with PA State Representative Keith Gillespie, to bring the disease and it’s symptoms to the forefront of the general public. It is my understanding that they will be televising the event after 11:00 AM on Tuesday March 12, 2013 on the PCN Network in PA, and on http://pcntv.com/

March 8, 2013

From the MSA Coalition: Rex Griswold, an MSA patient has generously requested that his company (Nestle Waters) donate to the MSA Coalition. As a result, The MSA Coalition was selected as the beneficiary of the 2013 CARRE Foundation fundraising event in honor of Rex Griswold of Nestlé Waters North America and Tom Gillard, formerly of Tropicana, QTG and MetRx. The proceeds donated by members of the CARRE Foundation will be donated to the MSA Coalition Research Fund.

Dr. David Robertson describes the disease and the need for research as Rex Griswold shares his personal story battling Multiple System Atrophy.   View the VIDEO

March 8, 2013

VIDEO: Woman’s post raises MSA awareness

March 8, 2013

WEBCAST REMINDER: Listen to Bob Summers discuss MSA LIVE online Friday, March 8th 12:30pm Eastern 5:30PM UTC/GMT Go to this link to listen to the webcast

NOTE: This interview will be replayed on Friday, March 15 12:30 PM Eastern time  = 4:30 PM GMT

Go to this link to listen to the program

March 6, 2013

Reported by Hugh Hogan:  “The Alabama Senate has passed a declaration making March MSA month. I worked with State Senator Gerald Dial on this thank you sir!!”

March 5, 2013

8000 Nigerians May Be Suffering from MSA

March 5, 2013


VIDEO: 12 year old girl, Logan Gable appears on TV interview with her grandmother who suffers from Multiple System Atrophy

View the video

March 5, 2013

Cervone continues to raise awareness

March 3, 2013

March 1, 2013

Reported by Don Crouse, board member of the Multiple System Atrophy Coalition:  “Good news! We received confirmation a few minutes ago from Senator Richard Burr that a flag is being raised over the US Capital today in recognition of Multiple System Atrophy Awareness Month! The Coalition will receive the flag in about two weeks and plans to use it to continue creating awareness for MSA.”

February 28, 2013

VIDEO: Sharon Sutton gives a wonderful speech about Multiple System Atrophy on Rare Disease Day

February 18, 2013

Indiana Senate passes resolution designating March as “Multiple System Atrophy Awareness Month”

Full Video available of the vote on Arkansas bill HR1005

February 15, 2013

House passes resolution to designate the month of March as “Multiple System Atrophy Awareness Month.”

1. Reported by Stacy Jenkins Cowart: “Arkansas passed a resolution today officially declaring March MSA Awareness month.” VIEW VIDEO

2. Reported by Charmayne Bischel: “MSA bill is being proposed in the state of Oregon” View the wording of the bill

February 13, 2013

1. There have been nearly 3000 hits on the online link to our press release… please keep sharing this link and if possible write your own press release using this as a model and send to local press.

http://www.prlog.org/12062758-march-is-multiple-system-atrophy-awareness-month.html

2. The Parkinson’s Disease Foundation has written expressing their support of MSA Awareness Month. They have offered up these tips for getting greater awareness on a local level in dealing with media.

http://www.pdf.org/en/parkinson_awareness_spread#media

3.  Cynthia Roemer (MSA New Jersey) has prepared this page with tips to guide you in getting MSA Awareness Month proclamations from government officials.

http://www.msanj.org/march-awareness-month-effort/

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