As Passed by the House
| 129th General Assembly |
| Regular Session |
| 2011-2012 |
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Representative Martin
Cosponsors: Representatives Mecklenborg, Thompson, Carey, O’Brien, Fende, Celeste, Johnson, Ramos, Anielski, Antonio, Ashford, Barnes, Beck, Boose, Boyd, Brenner, Bubp, Buchy, Carney, Celebrezze, Damschroder, Garland, Gerberry, Goyal, Grossman, Hackett, Hagan, R., Hall, Hayes, Hill, Hottinger, Kozlowski, Landis, Letson, Luckie, Lundy, Lynch, Mallory, Milkovich, Okey, Reece, Sears, Slaby, M., Slesnick, Smith, Stinziano, Williams, Winburn, Young, Yuko Speaker Batchelder
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To enact section 5.2267 of the Revised Code to |
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designate March as “Multiple System Atrophy |
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BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF OHIO:
| Section 1. That section 5.2267 of the Revised Code be enacted |
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| to read as follows: |
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| Sec. 5.2267. The month of March is designated as “Multiple |
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| System Atrophy Awareness Month” to increase public awareness of |
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| this progressive neurodegenerative disorder that affects the |
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| autonomic functions of the body. |
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Thanks to Frank Cervone and Susan Polson Cervone for their efforts to see this bill passed in Ohio! Are you wondering how to get a similar bill passed in your state? Susan Polson Cervone says “Contact your local State Representative and ask for a House Bill. Tell them Ohio started with House Bill 184. It’s a very short piece of legislation, but can be very powerful for us.”
October 3, 2012
“Ask Professor Wenning“
MSAawareness.org is proud to present
Professor Gregor Wenning MD PhD MSC
Medical doctor, scientific researcher and educator, and internationally known expert on Multiple System Atrophy.
Professor Wenning has volunteered to devote one hour of his time each week to answer your questions about Multiple System Atrophy.
Go here for more information on how to Ask Professor Wenning a question
Today is World MSA Day initiated by Rita Schouppe-Moons as a day of unity, a day of remembrance and a day of action.
Light a candle tonight in memory of those we’ve lost to Multiple System Atrophy.
Light a candle in honour of those who still fight on with dignity.
Light a candle in honour of all caregivers and lovegivers who ache for their loved one and mourn for the precious moments that this disease takes away.
Light a candle to light the way for the researchers who will one day cure MSA.
Against all odds, video featuring woman with very rare neurological disease wins fan favorite at the Neuro Film Festival.
FOR IMMEDIATE RELEASE
PRLog (Press Release) – Apr 22, 2012 -
Sioux Falls, South Dakota - Today Sioux Falls resident, Paola Drapkin Vermeer received the call from the Neuro Film Festival that she had been anticipating for several weeks. The call confirmed that her video entry depicting her mother Patricia Drapkin’s struggle with the rare neurological disease Multiple System Atrophy had been officially voted fan favorite via online voting.
For several weeks in late February and early March the worldwide community involved with raising awareness for Multiple System Atrophy had rallied to get out the vote through their social media connections. The votes came in slowly at first but then momentum began to build. During this period Paola made these remarks to supporters: “When I check the voting status of the video, I am always moved to tears…each time the number of votes is higher than the last time and each time I continue to be amazed.”
“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.”
Watch the Fan Favorite film here: http://www.youtube.com/watch?v=t-Db2cMgvSs
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.
So how was a film on such a rare disease able to win the fan favorite? The film festival happened at an opportune time for the MSA community since the voting window ran into March which has been designated Multiple System Atrophy awareness month (see http://www.prlog.org/11814804-facebook-group-fights-to-cr… ) Fans of the facebook group Miracles for MSA http://www.facebook.com/Miracles.for.MSA worked feverishly to garner votes from family and friends creating a buzz of excitement as word of the film spread.
“I have to say that I feel an overwhelming sense of community with all those that have voted, shared the link and asked their friends and family for their vote” says Paola Vermeer. “Along with that sense of community comes a sense of total and complete humility, that my small effort to bring MSA some awareness has been embraced so strongly”.
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.
Sadly, Paola’s mother Patricia passed away from complications of MSA in October 2011. “Mom’s MSA video will be shown tonight at the AAN Neuro Film Festival at 8:30pm in New Orleans at the Academy of Neurology Annual Meeting and promptly posted on their website and facebook page. Thanks again to all that voted and shared the link. This will be a great day for MSA awareness and will hopefully make a difference in the care, diagnosis and treatment of MSA patients the world over. It’s a great day for you, Mom, as your suffering will surely help many. This is a victory for MSA!”
You can watch all the 2012 Neuro Film Festival videos at this website
For more information on Multiple System Atrophy please see http://www.MSAawareness.org
STATES:
State of Ohio USA (Thanks to Frank Cervone)
State of Michigan, USA (Thanks to Roger Soderstrom)
State of Indiana, USA (week of March 11, 2012) (Thanks to Renate Sharp)
CITIES:
City of Fairborn, Ohio USA (Thanks to Frank Cervone)
City of Xenia, Ohio USA (Thanks to Frank Cervone)
City of Kettering, Ohio USA (Thanks to Frank Cervone)
City of Beavercreek, Ohio USA (Thanks to Frank Cervone)
City of Ottawa, Ontario CANADA (Thanks to Brenda Paquet)
City of Kokomo, Indiana USA (week of March 4, 2012) (Thanks to Renate Sharp)
City of Sioux Falls, South Dakota USA (Thanks to Paola Vermeer)
City of La Verne, California USA (Thanks to Ashley Sourapas)
City of Newark, California USA (Thanks to Yvonne Valle-Mott)
City of Oakland, California USA (Thanks to Yvonne Valle-Mott)
City of Alameda, California USA (Thanks to Yvonne Valle-Mott)
City of Hayward, California USA (Thanks to Yvonne Valle-Mott)
City of San Leandro, California USA (Thanks to Yvonne Valle-Mott)
City of Union City, California USA (Thanks to Yvonne Valle-Mott)
COUNTIES:
County of Rutherford, Tennessee USA (Thanks to Sue & Bob Summers)
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!
A film on Multiple System Atrophy has been entered in the Neuro Film Festival.
TO VIEW THE FILM PLEASE CLICK HERE
We need your help to get enough votes to make it the “Fan Favorite”, this will
mean increased publicity for Multiple System Atrophy which is so desperately needed.
This is an achievable goal if we all work together.
As of February 11th the film is in first place in the voting but the second place film is very close behind, every single vote counts.
Ask your friends to vote, post on your facebook wall and twitter accounts, get
your teenage relatives involved so all their friends will vote too. We can do
this!!!
PLEASE TAKE ACTION NOW! GO TO THIS WEBSITE AND ENTER YOUR VOTE BEFORE MARCH 8TH.
Please follow these instructions exactly to ensure your vote is counted:
Step 1: Go to Neuro Film Festival Website
http://patients.aan.com/go/about/neurofilmfestival
Step 2: click on the VOTE NOW! tab.
Step 3: Click on Register Now and enter your details
Step 4: Check you email inbox for a verification email – click on the link to
verify your registration
Step 5: Go Vote — Go back to Neuro Film Festival Website
http://patients.aan.com/go/about/neurofilmfestival and click VOTE NOW
Step 6: Find the “Multiple System Atrophy MSA” film in the list and click on the word VOTE
Note: If you have more than one email address you may register that email and vote again. One vote per registered email address.
TO VIEW THE FILM PLEASE CLICK HERE
Leading up to March Multiple System Atrophy Awareness month, I will be nominating individuals or groups as “MSA Awareness Ambassadors” by presenting them with this MSA Awareness badge. A list of nominees and the reason for their nomination will be highlighted on this page and also on our sister site Multiple System Atrophy Awareness Month on facebook. It is my hope that those tagged will agree to spread MSA Awareness during the month of March as representatives of this movement around the world. And as “imitation is the greatest form of flattery”, it’s also my hope that others will be inspired by their good works. These are all people or organizations that stand out in their efforts to support MSA patients and their families and/or to raise the profile of Multiple System Atrophy in the general public. If you know of an unsung MSA Awareness hero who you’d like to nominate please forward their name to me at pbower@accesscable.net and state why you think they should be an MSA Awareness Ambassador. Cheers! Pam 
