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 
As of December 10, 2011 Multiple System Atrophy now qualifies under Compassionate Allowance for SSA in the United States. This link is to their official description of MSA: https://secure.ssa.gov/apps10/poms.nsf/lnx/0423022630
PATIENTSLIKEME AND R.A.R.E PROJECT UNITE TO FIND AND CONNECT ONE MILLION RARE DISEASE PATIENTS
Nonprofit and “Not Just for Profit” Announce Collaboration at PartneringForCures Event
NEW YORK, NY – November 7, 2011 – Today, PatientsLikeMe and R.A.R.E Project, a nonprofit advocacy and support group for patients with all rare diseases, announce a new partnership to find and connect one million rare disease patients to share and learn everything possible about their conditions. The organizations, co-presenting at the PartneringForCures event today in New York, are launching an international rare disease awareness campaign with the goal of connecting 1 million patients by the end of 2012.
“There are 35 million patients in the U.S. with 7,000+ rare diseases and we want to find them, connect them and support them in sharing and learning by their specific disease and across all rare diseases,” says Dean Suhr, Chief Innovation and Community Development Officer at R.A.R.E. “We’re excited to work with PatientsLikeMe because their open patient registry allows patients to contribute to research, while getting immediate benefits to improve their immediate quality of life from sharing this information with others.”
The goal of this collaboration between R.A.R.E and PatientsLikeMe, an online health community that initially launched in 2005 for only ALS patients, is to rapidly connect patients to disease specific and cross-disease data, patients, researchers, companies and nonprofits to allow for better shared learning and acceleration of discovery. The partners will combine resources to provide patients with the opportunity to make online and local in-person connections, identify and evaluate nonprofits and local specialists, and contribute their health data to the Open Patient Registry™ at PatientsLikeMe. Unlike other registries, the Open Patient Registry allows patients to query the data to compare their medical data to others with similar diseases, symptoms, or therapies and they can also compare their data across other diseases.
“The key to accelerating research for any patients, although particularly powerful for those with rare conditions, is to have efficient access to well clinical patient populations willing to be part of research,” adds Jamie Heywood, Co-founder and Chairman of PatientsLikeMe. “It’s both terrifying and hard to think you’re alone or to manage your rare illness with a doctor who might not have ever seen another patient like you. We will change that.”
For patients and nonprofits that want to join PatientsLikeMe, go to www.patientslikeme.com.
FOR IMMEDIATE RELEASE
Contact: Bruce Janele, 800-457-4777
janele@curepsp.org
PSP, CBD, MSA, ALS/PDC Approved for Social Security Compassionate Allowance
TIMONIUM, Maryland, October 14, 2011 – The Social Security Administration (SSA) has approved four new rare diseases to now qualify for Compassionate Allowance (CAL):
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- Progressive Supranuclear Palsy (PSP)
- Corticobasal Degeneration (CBD)
- Multiple System Atrophy (MSA)
- Amyotrophic Lateral Sclerosis/Parkinsonism-Dementia Complex (ALS/PDC)
Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards.
Compassionate Allowances (CAL) are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to quickly target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly.
CAL conditions are developed as a result of information received at public outreach hearings, comments received from the Social Security and Disability Determination Service communities, counsel of medical and scientific experts, and our research with the National Institutes of Health (NIH). Also, SSA considered which conditions are most likely to meet current definitions of disability.
Commissioner Astrue has held seven Compassionate Allowances public outreach hearings. The hearings were on rare diseases, cancers, traumatic brain injury (TBI) and stroke, early-onset Alzheimer’s disease and related dementias, schizophrenia, cardiovascular disease and multiple organ transplants and autoimmune diseases.
The SSA’s decision to include these neurodegenerative disorders was based on the clinical information which CurePSP and its medical experts have provided over the past couple of years, as well as the active advocacy of CurePSP on behalf of patients and caregivers.
PSP, CBD, MSA, and ALS/PDC will not become an active part of SSA’s Compassionate Allowance until December 2011, at which point Social Security plans to begin accepting applications.
CurePSP is working with SSA’s Office of Disability Programs to develop instructions, documents, articles, webinars, and other information to inform the public about the program and facilitate the application process.
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CurePSP is the foremost organization dedicated to curing PSP, CBD, and related brain diseases. Since 1997, the Foundation has awarded over 125 PSP-related research grants totaling more than $9 million.
CurePSP’s mission is to increase awareness of progressive supranuclear palsy, corticobasal degeneration, and related brain diseases; fund research toward cure and prevention; educate healthcare professionals; and provide support, information, and hope for affected persons and their families.
More information can be found at: http://www.curepsp.org/
The National Ataxia Foundation is pleased to announce that the Social Security Administration has announced the addition of Multiple System Atrophy (MSA) to the list of Compassionate Allowance Conditions beginning in December 2011.
Michael J. Astrue, Commissioner of Social Security, announced on Thursday, October 13th that 13 new Compassionate Allowances conditions have been added including Multiple System Atrophy (MSA). “Social Security handles more than three million disability applications each year and we need to keep innovating and making our work more efficient,” Commissioner Astrue stated. “With our Compassionate Allowances program, we quickly approved disability benefits for more than 60,000 people with severe disabilities in the past fiscal year. We have made significant improvements, but we can always do more.”
Compassionate Allowances (CAL) are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to quickly target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly.
Social Security launched the Compassionate Allowances program in 2008 with a list of 50 diseases and conditions. The announcement of 13 new conditions, effective in December, will increase the total number of Compassionate Allowances conditions to 113. Currently, the Compassionate Allowance Conditions include Friedreich’s ataxia, Spinal Muscular Atrophy (SMA) – Types 0 and 1, Spinocerebellar Ataxia, and Ataxia Telangiectasia. Beginning in December 2011 there will be an additional 13 new Compassionate Allowance Conditions being recognized by the Social Security Administration including Multiple System Atrophy (MSA).
The National Ataxia Foundation (NAF) is a membership supported non-profit organization established in 1957 and is dedicated in serving ataxia families through support, education, and research. To find out more about ataxia and NAF, please visit our web site at www.ataxia.org. Thank you.
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Worldwide Awareness Day for Multiple System Atrophy
http://www.world-msa-day.org/
Worldwide action: A Mile & A Candle for MSA
Worldwide action to be held on the 3rd of October (World MSA Day).
Miles, all day long
Light a candle at 20:00 hrs / 8:00 p.m. for one hour local time
The population of the Earth is estimated to be 6,952,785,870 (as of August 1,
2011). This means that statistically we can estimate that worldwide 347.635*
people may be affected with MSA at this time. (*5 cases per 100,000)
We want to have a candle lit for everyone that may be affected with MSA and for
all those loved ones who have lost their battle in the past.
A Candle:
You can light your candle at home alone, or with friends and family, or during
your local activity that is planned for World MSA Day.
As candles are lit around the globe, a virtual 24-hour wave of light will be
created as it moves from time zone to time zone. Please light your candles at
20:00 hrs / 8 p.m. in your local time zone for one hour.
The flame of the candles will unite family and friends all over the world and
bring awareness to MSA. If you organize an event, you can sell candles to all
participants and send the proceeds to benefit and support local MSA groups. Each
single $, €, £ , ¥ counts. (MSA Support Groups who are interested please forward
your full information, so we can add your info on the list).
A Mile:
You can walk alone, or with family, friends and neighbors. Every step, every
kilometer or mile we will count together. The goal is to attempt to walk around
the earth (40,075.16 kilometers or 24,901.55 miles around the Earth at the
equator).
Let’s see how far we come this year.
Send in your mileage to be tallied. If you are able to get sponsors for your
steps, your wheelchair distance, your miles or kilometer, please forward the
proceeds to support local MSA groups.
A Mile and A Candle… please do as much as you are able to do, each step, each
inch or centimeter is a start for the 40,75.16 kilometers or 24,901.55 miles
needed. Each single candle counts toward the 347.635* needed.
Thanks to all who are willing to create awareness for MSA.
