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)
These individuals and organizations embody the spirit of the Multiple System Atrophy Awareness movement that is growing every year and spreading around the world.
1. SDS/MSA Support Group Also find them on facebook
For their steadfast support of MSA patients and families, I hearby nominate the SDS/MSA Support Group as an “MSA Awareness Ambassador”. Please accept this badge (MSA Awareness logo on black background) and pledge to join in the effort to raise awareness for Multiple System Atrophy during March 2012. Cheers!
Founded in 1989 by Dorothy Trainer-Kingsbury and Dr. David Robertson, the Shy-Drager Syndrome Support Group was the first U.S. based national charity focused solely on helping people affected by its namesake disease. They host a major MSA conference annually for patients and their families and provide phone support through their toll free phone number 1-866-537-5999.
Read more about the history of the group
Volunteer board members are Dr. David Robertson, Dr. Tom Chelimsky, Donald Crouse, Judy Biedenharn and Vera James.
Past president Don Summers resides in Coupland, Texas, USA with his wife Sylvia.
2. Vera James
For her unending devotion to MSA patients and families, I hearby nominate Vera James as an “MSA Awareness Ambassador”. Vera please accept this badge (MSA awareness logo on black background) and pledge to raise awareness for MSA in March and spread this movement around the world. Cheers!
Vera is a volunteer board member of the US based non-profit SDS/MSA Support Group and she provides phone and in person support to MSA patients and families as well as moderating and/or contributing to various online support groups for MSA. Vera dedicates her work for MSA patients and their families to the memory of her late husband Fred who had MSA. Vera resides in beautiful Walnut, California, USA.
3. Bob & Sue Summers
For Bob and Sue Summers’ tireless quest to shine a light on the plight of MSA patients and families, I hearby nominate them both as “MSA Awareness Ambassadors”. Bob & Sue, please accept this badge (MSA awareness logo on black background) and pledge to raise awareness for MSA in March and spread this movement around the world. Cheers!
Bob is a former high school basketball coach who is always full of encouraging words for those fighting MSA. Bob & Sue reside in Murfreesboro, Tennessee, USA.
4. Tim’s Shoe
For “Tim’s Shoe’s” determination to circle the globe and wear out his sole/soul in the quest to teach everyone about Multiple System Atrophy, I hearby nominate him as an “MSA Awareness Ambassador”. Mr. Shoe please accept this badge (MSA Awareness logo on black background) and pledge to double your efforts during the month of March and make March MSA Awareness Month a worldwide event. Cheers!
Watch this news video to learn the story of Tim’s Shoe.
In the photo above, holding Tim’s Shoe is Tim McNutt himself, former owner of Tim’s Shoe. Beside him are two lovely ladies who work behind the scenes ensuring that Tim’s Shoe makes it to his next destination. Pictured above are Gretchen Turner on the left and Darlene Ogden on the right. It was Gretchen’s mother, Pearl Turner who inspired Darlene to use Tim’s Shoe’s exploits to raise awareness for MSA. Tim, Darlene and Gretchen all live in the state of Georgia, USA. Tim’s Shoe continues to circle the globe raising MSA Awareness. Congratulations to all for your extraordinary efforts on behalf of MSA awareness!
5. Rita Ydennek
For her tireless efforts to bring MSA to the attention of the world in declaring World MSA Day October 3rd, I hearby nominate Rita Ydennek as an “MSA Awareness Ambassador”. Rita please accept this badge (MSA awareness logo on black background) and pledge to help us also make March Multiple System Atrophy Awareness Month a worldwide movement. Cheers!
Rita has dedicated herself to spreading worldwide awareness of MSA in memory of her late husband JiePie Schouppe who had MSA, his birthday was October 3rd. Rita resides in Belgium and is fluent in three languages.
6. Jessica “Sami” Pennington
For her ground breaking vision in bringing awareness to Multiple System Atrophy through YouTube video clips, I hearby nominate Sami as an “MSA Awareness Ambassador”. Sami please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
Sami has a series of videos on YouTube, the first was called Your Sami has MSA part 1. Sami resides in Othello, New Jersey, USA.
7. Andrea Lynn
For her pioneering work in using YouTube to bring awareness to the plight of patients with Multiple System Atrophy, I hearby nominate Andrea as an “MSA Awareness Ambassador”. Andrea please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
Andrea’s YouTube video: A Bit about Multiple System Atrophy has had 13,685 viewings as of this posting! Andrea resides in Minneapolis, Minnesota, USA.
8. Paul Walsh
For his efforts in educating others about Multiple System Atrophy through his website and blog “Living with Multiple System Atrophy” I hearby nominate Paul Walsh as an “MSA Awareness Ambassador”. Paul please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
Note that besides his website and blog, Paul was instrumental in writing and editing this Multiple System Atrophy pamphlet produced by Parkinson Society Canada. Paul has also established a website called Speak Up! to offer guidance in improving speech for people with Parkinsonism disorders. Paul resides in Toronto, Ontario, Canada.
9. Bonnie Bereskin, M. Ed., Speech-Language Pathologist
For her contributions in education and support of Multiple System Atrophy patients, improving their lives with speech therapy and establishing the Speak Up! website. I hearby nominate Bonnie Bereskin as an “MSA Awareness Ambassador”. Bonnie please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
Bonnie resides in Toronto, Ontario Canada
10. Cindy & Gene Rechsteiner & Kathy Pistoresi
In honor of her late husband Gene Rechsteiner who was the subject of the informative MSA Exercise Video on Youtube, I hearby nominate Cindy Rechsteiner as an “MSA Awareness Ambassador”. I also nominate Kathy Pistoresi, Gene’s personal trainer who did such an excellent job teaching Gene and all of us how to safely exercise while considering the limitations of MSA. Cindy & Kathy please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
Cindy and Kathy reside in Bakersfield, California, USA
11. Scott Poole
Scott has been nominated as an MSA Awareness Ambassador because of his much appreciated blog entitled Living with a Snow (Wo)man. Scott please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
Scott resides in Winston-Salem, North Carolina, USA.
12. Frank Cervone
Frank has been nominated as an MSA Awareness Ambassador because of his much appreciated MSA blog hosted by The Hollywood Republican. Frank please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
Frank resides in Fairborn, Ohio, USA where he served on the city council.
13. Sonja Van Rhyn and Karin Holzhausen
Sonja has been nominated as an MSA Awareness Ambassador because of her much appreciated MSA blog MSA in South Africa with Sonja. Karin has also been nominated as an MSA Awareness Ambassador because of her work in creating the website to host Sonja’s blog and her other initiatives for raising MSA Awareness in South Africa. Sonja and Karin please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
Both Sonja and Karin reside in South Africa.
14. Multiple System Atrophy Trust Also find them on facebook
For their steadfast support of MSA patients and families, I hearby nominate the Multiple System Atrophy Trust as an “MSA Awareness Ambassador”. Please accept this badge (MSA Awareness logo on black background) and pledge to join in the effort to raise awareness for Multiple System Atrophy during March 2012. Cheers!
The Multiple System Atrophy Trust was founded by MSA sufferer Sarah Matheson, their office is located in London England UK.
15. Paola Drapkin Vermeer
For her contributions in spreading awareness of of Multiple System Atrophy I hearby nominate Paola Vermeer as an “MSA Awareness Ambassador”. Paola please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
Paola has entered this video about her mother’s battle with MSA in the 2012 Neuro Film Festival from the American Academy of Neurology. Paola resides in Sioux Falls, South Dakota USA.
16. Orange MSA Kayaking Team Also find them on facebook
In 2010 Kevin Vermaak, Christopher “Granny” Drysdale, Ryan Sephton and Russell York took nearly three months to paddle the length of the Orange River in South Africa to raise awareness for MSA and to raise funds for the MSA trust.
Four friends
2200km
No assistance
Mid-summer
Big white water
Namib desert
Enough said
Gentlemen, you are true MSA Awareness Ambassadors and heroes for the cause! Please accept the MSA Awareness badge and pledge to support March Multiple System Atrophy Awareness Month and help make it a worldwide movement. Cheers!
17. Margot Orchison
Margot was the chief supporter of the Orange MSA team as they paddled 2200 kms in 2010, giving daily updates and getting the word out on facebook and to local press in South Africa. She inspired fans of Miracles for MSA to take action for MSA Awareness. Margot you are a true ambassador for the cause, please accept this MSA Awareness badge and pledge to support March Multiple System Atrophy Awareness Month and help make it a worldwide movement. Cheers!
Margot resides in South Africa.
18: The Ribeiro Sisters from Brazil – Carolina, Rachel and Thais Also find their MSA organization on facebook
These three ladies are organizing MSA awareness activities in Brazilia, Brazil. Each of them are true ambassadors for the cause. Carolina, Rachel and Thais, please accept this MSA Awareness badge and pledge to support March Multiple System Atrophy Awareness Month and help make it a worldwide movement. Cheers!
19. Brenda Paquet
For her efforts in educating others about Multiple System Atrophy through her blog “One Day at a Time – Brenda’s Journey with MSA” http://msaonedayatatime.blogspot.com I hearby nominate Brenda Paquet as an “MSA Awareness Ambassador”. Brenda, please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
Brenda resides in Ottawa, Ontario Canada. Brenda was instrumental in having the mayor of the city of Ottawa officially declare March as MSA Awareness month in 2012.
20. Todd Cowsky
For his dedication to supporting families touched by Multiple System Atrophy through his two facebook sites MSA Angels and MSA Buddies, I hearby nominate Todd Cowsky as an “MSA Awareness Ambassador”. Todd, please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
Todd resides in Elk Grove Village, Illinois USA.
21. Lily Shih
For her dedication to supporting families affected by Multiple System Atrophy through the Kathy Shih Memorial Foundation (aka CureMSA), in memory of her dear mother, I hearby nominate Lily Shih as an “MSA Awareness Ambassador”. Lily, please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
Lily resides in Fremont, California USA.
22. Carol Langer
For her dedication to supporting families affected by Multiple System Atrophy and raising awareness, in memory of her dear husband Rob, I hearby nominate Carol Langer as an “MSA Awareness Ambassador” Carol, please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
Carol and her late husband Rob have appeared on local television promoting MSA awareness. Carol formerly led the Boston area MSA support group and she currently supports MSA caregivers via the monthly CurePSP sponsored webinars. Carol resides in Bedford, Massachussetts USA and summers on the island of Nantucket.
23. Gary Rose
For his dedication to supporting families affected by Multiple System Atrophy and raising awareness, I hearby nominate Gary Rose as an “MSA Awareness Ambassador”. Gary, please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
Gary currently supports MSA patients via the monthly CurePSP sponsored webinars. Gary resides in Longview, Washington USA.
24. Cynthia Roemer
For her dedication to raising awareness, I hearby nominate Cynthia Roemer as an “MSA Awareness Ambassador”. Cindy, please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
Cindy has created the Movement for Support and Awareness facebook page to organize MSA Awareness activities in New Jersey. She also created the Faces of MSA photo/video tribute to MSA patients. Cindy resides in Ridgevale Park, New Jersey USA.
25. Kim Jackson
For her dedication to raising awareness, I hearby nominate Kim Jackson as an “MSA Awareness Ambassador”. Kim, please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
Kim works in Public Relations and provided her talents in writing and promoting the MSA Awareness Month press release for the past 3 years. She is also the inspiration behind creating this MSA Awareness website. Kim resides in Bridgewater, Vermont, USA.
26. Linda Lemay
For her dedication to raising awareness, I hearby nominate Linda Lemay as an “MSA Awareness Ambassador”. Linda, please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
Linda can be found busily posting on many MSA facebook pages and groups making sure that people’s questions get answered and information is shared. Linda resides in Cumberland, Rhode Island, USA.
27. Renate Sharp
For her dedication to raising awareness, I hearby nominate Renate Sharp as an “MSA Awareness Ambassador”. Renate, please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
Renate resides in Kokomo, Indiana USA. She was instrumental in having the city of Kokomo and the state of Indiana officially declare March MSA awareness weeks in 2012.
28. Roger and Ann Gerard
For their dedication to raising awareness, I hearby nominate Ann and Roger Gerard as “MSA Awareness Ambassadors”. Ann and Roger, please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
In February 2012 Ann and Roger made a presentation to the FDA Committee for the approval of Droxidopa for Neurogenic Orthostatic Hypotension. The medication was subsequently approved by a vote of 7 to 4. Roger and Ann reside in Westminster, Massachusetts, USA.
29. Anna Langerveld
For her dedication to raising awareness, I hearby nominate Anna Langerveld as an “MSA Awareness Ambassador”. Anna, please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
Anna Jelaso Langerveld Ph.D, President and CEO of Genemarkers. Anna received her Ph. D from the Interdisciplinary Neuroscience program at Tulane University in 1998. She served as the former Director of Environmental Institute’s Genomics Facility at Western Mich. Univ. Anna has experience in state of the art gene expression technologies.
In October, 2008 Anna attended the SDS/MSA Support Group’s Annual Meeting, which was held in Nashville, TN. And in March of 2009 Anna attended the “Miracles for MSA” fundraising event that was hosted by Pittsburgh Steeler Fernando Bryant. After attending these events Anna felt the need to do something to help the MSA community, something positive which would motivate, bring about awareness, educate communities about the disorder, help promote research and funding and allows MSA carereceivers and caregivers the opportunity to connect. Having this deep heart felt desire to make a difference for the MSA Community she returned to Michigan and created the Facebook page known as Miracles for MSA. She asked for and received approval from Fernando Bryant and his 25 Sports Foundation to continue to use this title as her theme. In early Fall the site was up and running. Anna set out with a purpose, which lead to her vision of bringing much needed awareness to MSA. Her purpose and vision has allow all of us in the MSA Community worldwide to share her dream. To bring awareness, educate and to raise money for research. Her vision has helped gives energy to the MSA Awareness and research movement!
30. Janet Edmunson
For her dedication to raising awareness, I hearby nominate Janet Edmunson as an “MSA Awareness Ambassador”. Janet, please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
Janet is an author and speaker she resides in Maine, USA. http://www.janetedmunson.com/
31. Robin Riddle
For her dedication to supporting families touched by Multiple System Atrophy, I hearby nominate Robin Riddle as an “MSA Awareness Ambassador”. Robin, please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
32. Doug Brandt
For his dedication to raising awareness, I hearby nominate Doug Brandt as an “MSA Awareness Ambassador”. Doug, please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
33. Yvonne Valle-Mott
For her dedication to raising awareness, I hearby nominate Yvonne Valle-Mott as an “MSA Awareness Ambassador”. Yvonne, please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
34. Ashley Sourapas
For her dedication to raising awareness, I hearby nominate Ashley Sourapas as an “MSA Awareness Ambassador”. Ashley, please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
35. All the MSA bloggers
These individuals past and present are making a difference by educating and spreading awareness about Multiple System Atrophy through their websites and blogs. I hearby nominate ALL MSA BLOGGERS as “MSA Awareness Ambassadors”.
Please check out this link to view these wonderful blog sites and acknowledge the individuals behind them.
36. Roger Soderstrom
For his dedication to raising awareness, I hearby nominate Roger Soderstrom as an “MSA Awareness Ambassador”. Roger, please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
37. Melissa Wilcox
For her dedication to raising awareness, I hearby nominate Melissa Wilcox as an “MSA Awareness Ambassador”. Melissa, please accept this badge (MSA Awareness logo on black background) and pledge to support March Multiple System Atrophy Awareness month and help make it a worldwide movement. Cheers!
MORE TO COME … PLEASE STAY TUNED
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/
