maandag 27 december 2010
I'll Stand by You, JiePie - walking on and on
Dedicated to the Memory of JiePie - Forever Missed Forever Loved
From Ritje with Love
dinsdag 21 december 2010
Reflect on what we did and what we could have done ...
Dear all,
As the end of the year is near, it’s time to reflect on what we did and what we could have done over the past year.
A lot of good ideas have been raised by different individuals and support groups around the globe. Thanks to every single person for the effort made to bring about awareness of MSA and World MSA Day.
Although we at times feel alone, we have a common interest; that is our fight against MSA.
We are fortunate to be able to communicate through the Internet. Even though we are kilometres apart, we are brought together by a click of the mouse, joining together countries such as New Zealand – Australia – South Africa- the USA – Venezuela – Israel – and all the countries in Europe.
Our voices will be echoed around and will be multiplied each time, again and again till everyone on earth will know what MSA is. There will be a day they find a cure; I strongly believe this.
To achieve our aim, we need to persevere through out the years ahead.
We all make New Year resolutions and would like to hear from all what good intentions they have.
The next World MSA Day will be here sooner than we think. Please; place this date on your agenda and try to organize a local event on or around October 3rd.
It can go from very small actions in the little town by talking with a few school kids and make them aware about MSA. Organize a local Bingo, Bowling …, or even some bigger events together with local Medical support from your Neurologist, Doctor or Nurse. …If you are up to it, even a large show to raise proceeds would be welcome. Please let us know what your plans are and we will add it into the international MSA calendar.
There will be a song composed by a famous Irish singer and songwriter in multilingual language. The song and name of the singer / writer will be released with the song in the near future.
From our side we have a lot to chair and we hope you will chair this with us.
We like to thank you all again and wish you a peaceful Christmas, and a prosper 2011.
Season Greeting to all of you!
Rita Schouppe, spokesperson
World MSA Day Volunteers Team posted December 21, 2010
As the end of the year is near, it’s time to reflect on what we did and what we could have done over the past year.
A lot of good ideas have been raised by different individuals and support groups around the globe. Thanks to every single person for the effort made to bring about awareness of MSA and World MSA Day.
Although we at times feel alone, we have a common interest; that is our fight against MSA.
We are fortunate to be able to communicate through the Internet. Even though we are kilometres apart, we are brought together by a click of the mouse, joining together countries such as New Zealand – Australia – South Africa- the USA – Venezuela – Israel – and all the countries in Europe.
Our voices will be echoed around and will be multiplied each time, again and again till everyone on earth will know what MSA is. There will be a day they find a cure; I strongly believe this.
To achieve our aim, we need to persevere through out the years ahead.
We all make New Year resolutions and would like to hear from all what good intentions they have.
The next World MSA Day will be here sooner than we think. Please; place this date on your agenda and try to organize a local event on or around October 3rd.
It can go from very small actions in the little town by talking with a few school kids and make them aware about MSA. Organize a local Bingo, Bowling …, or even some bigger events together with local Medical support from your Neurologist, Doctor or Nurse. …If you are up to it, even a large show to raise proceeds would be welcome. Please let us know what your plans are and we will add it into the international MSA calendar.
There will be a song composed by a famous Irish singer and songwriter in multilingual language. The song and name of the singer / writer will be released with the song in the near future.
From our side we have a lot to chair and we hope you will chair this with us.
We like to thank you all again and wish you a peaceful Christmas, and a prosper 2011.
Season Greeting to all of you!
Rita Schouppe, spokesperson
World MSA Day Volunteers Team posted December 21, 2010
woensdag 8 december 2010
MSA in de Media
MSA in de Media
http://www.youtube.com/watch?v=J855ZB59ZHQ
Persconferentie in beeld:
Opnames van Werelddag MSA 2010
Deel 1 - Welkom
Film MSA Info - ( 7,41 Min)
Historiek opstart patiënten vereniging MSA-AMS.be, door Rita SCHOUPPE-MOONS, voorzitsterMSA-AMS.be vzw
Prof. Dr. Patrick CRAS - deel 2
Wat is MSA? oude en nieuwe naamgeving -hoe frequent en bij wie?
Diagnostische criteria - symptomen - autonoom zenuwstelsel - neuropsychiatrische stoornissen.
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw.
Wat is MSA? oude en nieuwe naamgeving -hoe frequent en bij wie?
Diagnostische criteria - symptomen - autonoom zenuwstelsel - neuropsychiatrische stoornissen.
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw.
Prof. Dr. Patrick CRAS - deel 3
Ziektemechanismen
Multiple System Atrophy: A Primary Oligodendrogliopathy.
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw .
Ziektemechanismen
Multiple System Atrophy: A Primary Oligodendrogliopathy.
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw .
Prof. Dr. Patrick CRAS - deel 4.
Dopaminerge synaps - Ziekte van Parkinson - MSA
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw
Dopaminerge synaps - Ziekte van Parkinson - MSA
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw
Prof. Dr. Patrick CRAS - deel 05
Hoe wordt de diagnose gesteld? - Prognose - Behandeling en Klinische studies
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw
Hoe wordt de diagnose gesteld? - Prognose - Behandeling en Klinische studies
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw
Prof. Dr. Patrick CRAS - deel 6
Onderzoeksinitiatieven - Klinisch team - Neurodegeneratieve Hersenziekten Groep VIB - Departement Moleculaire Genetica Universiteit Antwerpen - European Multilpe System Atrophy Study Group (EMSA-SG).
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw
Onderzoeksinitiatieven - Klinisch team - Neurodegeneratieve Hersenziekten Groep VIB - Departement Moleculaire Genetica Universiteit Antwerpen - European Multilpe System Atrophy Study Group (EMSA-SG).
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw
Prof. Dr. Patrick CRAS - deel 7
Q&A - Einde
door Prof. Dr. Patrick CRAS, UZA, Dr. Barbara Pickut, UZA & Rita Schouppe-Moons,MSA-AMS.be vzw
door Prof. Dr. Patrick CRAS, UZA, Dr. Barbara Pickut, UZA & Rita Schouppe-Moons,MSA-AMS.be vzw
Gazet van Antwerpen, 1 oktober 2010
Belang van Limburg, 1 oktober 2010
Verschenen : Gezondheid.be, editie 28 augustus 2010
dossier: Meervoudig systeem atrofie
International Gymnast Magazine and International Gymnast Magazine Online are the world's leading source of gymnastics news and information since 1956.
| |||||
Stricken by a rare neurological disorder, gymnastics legendNikolai Andrianovis fighting for his life while his family desperately seeks treatment.
The 15-time Olympic medalist, 57, is suffering from multiple system atrophy (MSA), sonSergei Andrianovtold IG.
"The diagnosis is olivopontocerebellar degeneration, terminal stage," Sergei said. "His illness is fatal and he will not have long to live, the doctors said."
MSA is a rare progressive neurodegenerative disorder similar to Parkinson's Disease. It is characterized by motor control symptoms such as tremor, rigidity and loss of muscle coordination, according to the U.S. National Institutes of Health.
Beginning with weakness on his right side, the disease has severely disabled the elder Andrianov, who is confined to his bed at his home in Vladimir, Russia.
"His condition is bad. Very bad," Sergei said. "He cannot move either his arms or legs, and he cannot speak."
While the disease is terminal, the symptoms can be eased and quality of life improved with medical care. His family is hoping someone may be able to offer him treatment.
"I would be very grateful if someone could consult American doctors about my father's condition," said Sergei, a former gymnast who now coaches in Japan.
Andrianov began gymnastics at age 12, after witnessing a boy walking on his hands at the beach. He went to the gym in Vladimir where he was the oldest boy among the beginners. He decided to quit, but coachNikolai Tolkachyovtracked him down and persuaded him to stay, seeing his potential.
From 1971-1980, Andrianov won 15 Olympic medals (seven gold, five silver, three bronze), 12 world championship medals (four gold and eight silver) and 18 European championship medals (10 gold, six silver, two bronze). His all-around titles include the 1975 European Championships, the 1976 Olympic Games and the 1978 World Championships. He is ranked third behind only fellow Soviet gymnastLarisa Latynina(18 medals) and U.S. swimmerMichael Phelps(16 medals) on the all-time Olympic medal count.
After his retirement, he dedicated his life to gymnastics. He served as the head coach of the Soviet junior men's team from 1981-1992, judged internationally and was elected president of the Soviet Gymnastics Federation in 1990. He is married to two-time Soviet Olympic gold medalistLyubov Burda.
In 1994, he accepted the invitation of former rivalMitsuo Tsukaharato coach in Japan. One of the gymnasts he coached was Tsukahara's own son,Naoya Tsukahara, who helped Japan win the team title at the 2004 Olympics.
In 2001, Andrianov was inducted into the International Gymnastics Hall of Fame.
Andrianov returned to Vladimir in 2002 to coach at the gym where he trained as a youth, now named after Tolkachyov. Among his pupils was future OlympianYuri Ryazanov, who was killed in a car accident last October, days after winning the all-around bronze medal at the world championships in London. Despite his own illness, Andrianov was able to attend Ryazanov's funeral in Vladimir.
Those wishing to send messages of support to Andrianov, or those with medical resources who may be able to help, may contact Sergei Andrianov atsa2525@hotmail.ru.
http://ww.gva.be/antwerpen/borsbeek/jiepie-is-thuis-vredig-in-mijn-armen- 6 januari 2010
http://ww.gva.be/antwerpen/borsbeek/jiepie-is-thuis-vredig-in-mijn-armen-gestorven.aspx
limburg/bree/brandweerman-verliest-strijd-tegen-msa.aspx
The 15-time Olympic medalist, 57, is suffering from multiple system atrophy (MSA), sonSergei Andrianovtold IG.
"The diagnosis is olivopontocerebellar degeneration, terminal stage," Sergei said. "His illness is fatal and he will not have long to live, the doctors said."
MSA is a rare progressive neurodegenerative disorder similar to Parkinson's Disease. It is characterized by motor control symptoms such as tremor, rigidity and loss of muscle coordination, according to the U.S. National Institutes of Health.
Beginning with weakness on his right side, the disease has severely disabled the elder Andrianov, who is confined to his bed at his home in Vladimir, Russia.
"His condition is bad. Very bad," Sergei said. "He cannot move either his arms or legs, and he cannot speak."
While the disease is terminal, the symptoms can be eased and quality of life improved with medical care. His family is hoping someone may be able to offer him treatment.
"I would be very grateful if someone could consult American doctors about my father's condition," said Sergei, a former gymnast who now coaches in Japan.
Andrianov began gymnastics at age 12, after witnessing a boy walking on his hands at the beach. He went to the gym in Vladimir where he was the oldest boy among the beginners. He decided to quit, but coachNikolai Tolkachyovtracked him down and persuaded him to stay, seeing his potential.
From 1971-1980, Andrianov won 15 Olympic medals (seven gold, five silver, three bronze), 12 world championship medals (four gold and eight silver) and 18 European championship medals (10 gold, six silver, two bronze). His all-around titles include the 1975 European Championships, the 1976 Olympic Games and the 1978 World Championships. He is ranked third behind only fellow Soviet gymnastLarisa Latynina(18 medals) and U.S. swimmerMichael Phelps(16 medals) on the all-time Olympic medal count.
After his retirement, he dedicated his life to gymnastics. He served as the head coach of the Soviet junior men's team from 1981-1992, judged internationally and was elected president of the Soviet Gymnastics Federation in 1990. He is married to two-time Soviet Olympic gold medalistLyubov Burda.
In 1994, he accepted the invitation of former rivalMitsuo Tsukaharato coach in Japan. One of the gymnasts he coached was Tsukahara's own son,Naoya Tsukahara, who helped Japan win the team title at the 2004 Olympics.
In 2001, Andrianov was inducted into the International Gymnastics Hall of Fame.
Andrianov returned to Vladimir in 2002 to coach at the gym where he trained as a youth, now named after Tolkachyov. Among his pupils was future OlympianYuri Ryazanov, who was killed in a car accident last October, days after winning the all-around bronze medal at the world championships in London. Despite his own illness, Andrianov was able to attend Ryazanov's funeral in Vladimir.
Those wishing to send messages of support to Andrianov, or those with medical resources who may be able to help, may contact Sergei Andrianov atsa2525@hotmail.ru.
http://ww.gva.be/antwerpen/borsbeek/jiepie-is-thuis-vredig-in-mijn-armen- 6 januari 2010
http://ww.gva.be/antwerpen/borsbeek/jiepie-is-thuis-vredig-in-mijn-armen-gestorven.aspx
limburg/bree/brandweerman-verliest-strijd-tegen-msa.aspx
Veel nieuwe web informatie
Beste vrienden allemaal,
Hopelijk gaat het goed met ieder van jullie. Het is ijzig koud, dus goed binnen blijven is de boodschap. Laat je zoveel mogelijk verwennen door de familie en vrienden en geniet van de sneeuw 'van binnen uit' gezien!
Het is een tijdje geleden dat ik nog eens een 'grote' mail stuurde naar iedereen.
Hier is hij dan.
We kunnen fier terugblikken op wat we de voorbije maanden bereikt hebben. We krijgen meer en meer reacties van grote organisaties, die ons op hun web-links plaatsen en ons als erkende organisatie opnemen in hun lijst. Deze web links staat zoals gebruikelijk allemaal op onze web in de pagina 'Links'. Er zijn nu ook:
Na de persconferentie van 30 september en de Wereldag MSA op 3 oktober hebben we heel veel reacties gehad van mensen die van dichtbij te maken hadden met MSA, hetzij zijzelf, familie of vrienden.
Ook heel wat mensen die dachten in onze symptomen hun 'ziektebeeld' terug te vinden - we hebben talrijke folders verzonden per post. We hopen dat al dezen hun weg naar hulp vinden bij de neuroloog in hun buurt om een juiste diagnose te krijgen.
We werken ook nauw samen met de MSA werkgroep van de Parkinson vereniging in Nederland. Ook van het zuiden krijgen we meer en meer contacten. In het vooruitzicht hiervan hebben we al enkele weken een proefproject lopen met een nieuwe website:
Het is een andere look - maar alle info die je daar leest in de Nederlandse pagina is het zelfde van wat op onze eigen vertrouwde web staat in de MSA (Nederlands)
deze nieuwe web werkt aanvullend aan de nood voor een grensoverschrijdende samenwerking.
Ook is de web voor alle Parkinsonisme klaar, na het proef draaien van enkele weken kan je er terecht voor alle Parkinson+, (zelfde info stond ook al een tijd op onze web onder de rubriek Parkinsonisme)
Lees je graag over MSA in het Zweeds of het Hebreeuws, neem dan eens een kijkje op de web van Werelddag MSA - kijk in de Multi-lingual pagina en lees in 13 talen over MSA
De diverse mails zijn er om de zoektocht voor patiënten makkelijker te maken en doel gerichter te kunnen werken. Ook onze eigen web zal in een nieuwe look komen (had dit graag al klaar gehad, maar het is complexer dan dat het oogt - .hier kunnen we niet proefdraaien gezien de huidige moet blijven bestaan tot de nieuwe helemaal klaar is. Nieuw streef doel hiervoor is februari 2011.
In bijlage is er een word document waar je alles kunt lezen over de maand resultaten van November 2010. Ik denk dat de inhoud voor zichzelf spreekt. Het is info via 2 verschillende statistiek tools.
eerste krijg je een overzicht van welke pagina's gelezen worden
... nadien hoeveel bezoekers we per dag hadden
... ook welke landen ons bezoeken
... en welke zoek functies men ingeeft in de Google en andere zoekmachines. Al kijkje er even in diagonaal overheen, zul je al vlug zien dat het echt nodig is om met de verhalen van ... naar buiten te komen en dat er massa mensen opzoek zijn naar antwoorden op hun vragen..
De film zal nog even duren voor die af is - montage vraagt veel tijd (met tekst, geluid en muziek) ik hou jullie hiervan zo vlug mogelijk op de hoogte.
Nog niet moe van het lezen? neem dan nog eens een kijkje op de web
Minder Mobiel, Toch Actief,
zij zijn één van de winnaars van 'Hart voor een Hart' (staat morgen in "de Standaard".
Ook op de http://www.phegi.com/neuro.html kan je nog veel info vinden over hersenen en ...
Peter's vader stierf 2 jaar geleden.
deze links staan ook allemaal op onze vertrouwde web (links)
Het is weer een lange mail geworden. Veel leesplezier en ik hoor wel de opmerkingen en de goede raad.
Nog een fijne dag verder en houw er de moed in.
Een dikke knuffel aan ieder,
Liefs
Ritje
woensdag 1 december 2010
MSA in de Media
MSA in de Media
http://www.youtube.com/watch?v=J855ZB59ZHQ
Persconferentie in beeld:
Opnames van Werelddag MSA 2010
Deel 1 - Welkom
Film MSA Info - ( 7,41 Min)
Historiek opstart patiënten vereniging MSA-AMS.be, door Rita SCHOUPPE-MOONS, voorzitsterMSA-AMS.be vzw
Prof. Dr. Patrick CRAS - deel 2
Wat is MSA? oude en nieuwe naamgeving -hoe frequent en bij wie?
Diagnostische criteria - symptomen - autonoom zenuwstelsel - neuropsychiatrische stoornissen.
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw.
Wat is MSA? oude en nieuwe naamgeving -hoe frequent en bij wie?
Diagnostische criteria - symptomen - autonoom zenuwstelsel - neuropsychiatrische stoornissen.
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw.
Prof. Dr. Patrick CRAS - deel 3
Ziektemechanismen
Multiple System Atrophy: A Primary Oligodendrogliopathy.
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw .
Ziektemechanismen
Multiple System Atrophy: A Primary Oligodendrogliopathy.
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw .
Prof. Dr. Patrick CRAS - deel 4.
Dopaminerge synaps - Ziekte van Parkinson - MSA
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw
Dopaminerge synaps - Ziekte van Parkinson - MSA
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw
Prof. Dr. Patrick CRAS - deel 05
Hoe wordt de diagnose gesteld? - Prognose - Behandeling en Klinische studies
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw
Hoe wordt de diagnose gesteld? - Prognose - Behandeling en Klinische studies
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw
Prof. Dr. Patrick CRAS - deel 6
Onderzoeksinitiatieven - Klinisch team - Neurodegeneratieve Hersenziekten Groep VIB - Departement Moleculaire Genetica Universiteit Antwerpen - European Multilpe System Atrophy Study Group (EMSA-SG).
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw
Onderzoeksinitiatieven - Klinisch team - Neurodegeneratieve Hersenziekten Groep VIB - Departement Moleculaire Genetica Universiteit Antwerpen - European Multilpe System Atrophy Study Group (EMSA-SG).
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw
Prof. Dr. Patrick CRAS - deel 7
Q&A - Einde
door Prof. Dr. Patrick CRAS, UZA, Dr. Barbara Pickut, UZA & Rita Schouppe-Moons,MSA-AMS.be vzw
door Prof. Dr. Patrick CRAS, UZA, Dr. Barbara Pickut, UZA & Rita Schouppe-Moons,MSA-AMS.be vzw
Gazet van Antwerpen, 1 oktober 2010
Belang van Limburg, 1 oktober 2010
Verschenen : Gezondheid.be, editie 28 augustus 2010
dossier: Meervoudig systeem atrofie
International Gymnast Magazine and International Gymnast Magazine Online are the world's leading source of gymnastics news and information since 1956.
| |||||
Stricken by a rare neurological disorder, gymnastics legendNikolai Andrianovis fighting for his life while his family desperately seeks treatment.
The 15-time Olympic medalist, 57, is suffering from multiple system atrophy (MSA), sonSergei Andrianovtold IG.
"The diagnosis is olivopontocerebellar degeneration, terminal stage," Sergei said. "His illness is fatal and he will not have long to live, the doctors said."
MSA is a rare progressive neurodegenerative disorder similar to Parkinson's Disease. It is characterized by motor control symptoms such as tremor, rigidity and loss of muscle coordination, according to the U.S. National Institutes of Health.
Beginning with weakness on his right side, the disease has severely disabled the elder Andrianov, who is confined to his bed at his home in Vladimir, Russia.
"His condition is bad. Very bad," Sergei said. "He cannot move either his arms or legs, and he cannot speak."
While the disease is terminal, the symptoms can be eased and quality of life improved with medical care. His family is hoping someone may be able to offer him treatment.
"I would be very grateful if someone could consult American doctors about my father's condition," said Sergei, a former gymnast who now coaches in Japan.
Andrianov began gymnastics at age 12, after witnessing a boy walking on his hands at the beach. He went to the gym in Vladimir where he was the oldest boy among the beginners. He decided to quit, but coachNikolai Tolkachyovtracked him down and persuaded him to stay, seeing his potential.
From 1971-1980, Andrianov won 15 Olympic medals (seven gold, five silver, three bronze), 12 world championship medals (four gold and eight silver) and 18 European championship medals (10 gold, six silver, two bronze). His all-around titles include the 1975 European Championships, the 1976 Olympic Games and the 1978 World Championships. He is ranked third behind only fellow Soviet gymnastLarisa Latynina(18 medals) and U.S. swimmerMichael Phelps(16 medals) on the all-time Olympic medal count.
After his retirement, he dedicated his life to gymnastics. He served as the head coach of the Soviet junior men's team from 1981-1992, judged internationally and was elected president of the Soviet Gymnastics Federation in 1990. He is married to two-time Soviet Olympic gold medalistLyubov Burda.
In 1994, he accepted the invitation of former rivalMitsuo Tsukaharato coach in Japan. One of the gymnasts he coached was Tsukahara's own son,Naoya Tsukahara, who helped Japan win the team title at the 2004 Olympics.
In 2001, Andrianov was inducted into the International Gymnastics Hall of Fame.
Andrianov returned to Vladimir in 2002 to coach at the gym where he trained as a youth, now named after Tolkachyov. Among his pupils was future OlympianYuri Ryazanov, who was killed in a car accident last October, days after winning the all-around bronze medal at the world championships in London. Despite his own illness, Andrianov was able to attend Ryazanov's funeral in Vladimir.
Those wishing to send messages of support to Andrianov, or those with medical resources who may be able to help, may contact Sergei Andrianov atsa2525@hotmail.ru.
http://ww.gva.be/antwerpen/borsbeek/jiepie-is-thuis-vredig-in-mijn-armen- verschenen op 6 januari 2010
http://ww.gva.be/antwerpen/borsbeek/jiepie-is-thuis-vredig-in-mijn-armen-gestorven.aspx
v
limburg/bree/brandweerman-verliest-strijd-tegen-msa.aspx - verschenen op 9 april 2009
http://www.hbvl.be/limburg/bree/brandweerman-verliest-strijd-tegen-msa.aspx
The 15-time Olympic medalist, 57, is suffering from multiple system atrophy (MSA), sonSergei Andrianovtold IG.
"The diagnosis is olivopontocerebellar degeneration, terminal stage," Sergei said. "His illness is fatal and he will not have long to live, the doctors said."
MSA is a rare progressive neurodegenerative disorder similar to Parkinson's Disease. It is characterized by motor control symptoms such as tremor, rigidity and loss of muscle coordination, according to the U.S. National Institutes of Health.
Beginning with weakness on his right side, the disease has severely disabled the elder Andrianov, who is confined to his bed at his home in Vladimir, Russia.
"His condition is bad. Very bad," Sergei said. "He cannot move either his arms or legs, and he cannot speak."
While the disease is terminal, the symptoms can be eased and quality of life improved with medical care. His family is hoping someone may be able to offer him treatment.
"I would be very grateful if someone could consult American doctors about my father's condition," said Sergei, a former gymnast who now coaches in Japan.
Andrianov began gymnastics at age 12, after witnessing a boy walking on his hands at the beach. He went to the gym in Vladimir where he was the oldest boy among the beginners. He decided to quit, but coachNikolai Tolkachyovtracked him down and persuaded him to stay, seeing his potential.
From 1971-1980, Andrianov won 15 Olympic medals (seven gold, five silver, three bronze), 12 world championship medals (four gold and eight silver) and 18 European championship medals (10 gold, six silver, two bronze). His all-around titles include the 1975 European Championships, the 1976 Olympic Games and the 1978 World Championships. He is ranked third behind only fellow Soviet gymnastLarisa Latynina(18 medals) and U.S. swimmerMichael Phelps(16 medals) on the all-time Olympic medal count.
After his retirement, he dedicated his life to gymnastics. He served as the head coach of the Soviet junior men's team from 1981-1992, judged internationally and was elected president of the Soviet Gymnastics Federation in 1990. He is married to two-time Soviet Olympic gold medalistLyubov Burda.
In 1994, he accepted the invitation of former rivalMitsuo Tsukaharato coach in Japan. One of the gymnasts he coached was Tsukahara's own son,Naoya Tsukahara, who helped Japan win the team title at the 2004 Olympics.
In 2001, Andrianov was inducted into the International Gymnastics Hall of Fame.
Andrianov returned to Vladimir in 2002 to coach at the gym where he trained as a youth, now named after Tolkachyov. Among his pupils was future OlympianYuri Ryazanov, who was killed in a car accident last October, days after winning the all-around bronze medal at the world championships in London. Despite his own illness, Andrianov was able to attend Ryazanov's funeral in Vladimir.
Those wishing to send messages of support to Andrianov, or those with medical resources who may be able to help, may contact Sergei Andrianov atsa2525@hotmail.ru.
http://ww.gva.be/antwerpen/borsbeek/jiepie-is-thuis-vredig-in-mijn-armen- verschenen op 6 januari 2010
http://ww.gva.be/antwerpen/borsbeek/jiepie-is-thuis-vredig-in-mijn-armen-gestorven.aspx
v
limburg/bree/brandweerman-verliest-strijd-tegen-msa.aspx - verschenen op 9 april 2009
http://www.hbvl.be/limburg/bree/brandweerman-verliest-strijd-tegen-msa.aspx
maandag 8 november 2010
MSA in de Media
Persconferentie in beeld:
Opnames van Werelddag MSA 2010
Deel 1 - Welkom
Film MSA Info - ( 7,41 Min)
Historiek opstart patiënten vereniging MSA-AMS.be, door Rita SCHOUPPE-MOONS, voorzitsterMSA-AMS.be vzw
Prof. Dr. Patrick CRAS - deel 2
Wat is MSA? oude en nieuwe naamgeving -hoe frequent en bij wie?
Diagnostische criteria - symptomen - autonoom zenuwstelsel - neuropsychiatrische stoornissen.
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw.
Wat is MSA? oude en nieuwe naamgeving -hoe frequent en bij wie?
Diagnostische criteria - symptomen - autonoom zenuwstelsel - neuropsychiatrische stoornissen.
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw.
Prof. Dr. Patrick CRAS - deel 3
Ziektemechanismen
Multiple System Atrophy: A Primary Oligodendrogliopathy.
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw .
Ziektemechanismen
Multiple System Atrophy: A Primary Oligodendrogliopathy.
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw .
Prof. Dr. Patrick CRAS - deel 4.
Dopaminerge synaps - Ziekte van Parkinson - MSA
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw
Dopaminerge synaps - Ziekte van Parkinson - MSA
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw
Prof. Dr. Patrick CRAS - deel 05
Hoe wordt de diagnose gesteld? - Prognose - Behandeling en Klinische studies
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw
Hoe wordt de diagnose gesteld? - Prognose - Behandeling en Klinische studies
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw
Prof. Dr. Patrick CRAS - deel 6
Onderzoeksinitiatieven - Klinisch team - Neurodegeneratieve Hersenziekten Groep VIB - Departement Moleculaire Genetica Universiteit Antwerpen - European Multilpe System Atrophy Study Group (EMSA-SG).
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw
Onderzoeksinitiatieven - Klinisch team - Neurodegeneratieve Hersenziekten Groep VIB - Departement Moleculaire Genetica Universiteit Antwerpen - European Multilpe System Atrophy Study Group (EMSA-SG).
door Prof. Dr. Patrick CRAS, UZA en MSA-AMS.be vzw
Prof. Dr. Patrick CRAS - deel 7
Q&A - Einde
door Prof. Dr. Patrick CRAS, UZA, Dr. Barbara Pickut, UZA & Rita Schouppe-Moons,MSA-AMS.be vzw
door Prof. Dr. Patrick CRAS, UZA, Dr. Barbara Pickut, UZA & Rita Schouppe-Moons,MSA-AMS.be vzw
Gazet van Antwerpen, 1 oktober 2010
zie pdf in download folders
Belang van Limburg, 1 oktober 2010
zie pdf in download folders
Verschenen : Gezondheid.be, editie 28 augustus 2010
dossier: Meervoudig systeem atrofie
International Gymnast Magazine and International Gymnast Magazine Online are the world's leading source of gymnastics news and information since 1956.
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Stricken by a rare neurological disorder, gymnastics legendNikolai Andrianovis fighting for his life while his family desperately seeks treatment.
The 15-time Olympic medalist, 57, is suffering from multiple system atrophy (MSA), sonSergei Andrianovtold IG.
"The diagnosis is olivopontocerebellar degeneration, terminal stage," Sergei said. "His illness is fatal and he will not have long to live, the doctors said."
MSA is a rare progressive neurodegenerative disorder similar to Parkinson's Disease. It is characterized by motor control symptoms such as tremor, rigidity and loss of muscle coordination, according to the U.S. National Institutes of Health.
Beginning with weakness on his right side, the disease has severely disabled the elder Andrianov, who is confined to his bed at his home in Vladimir, Russia.
"His condition is bad. Very bad," Sergei said. "He cannot move either his arms or legs, and he cannot speak."
While the disease is terminal, the symptoms can be eased and quality of life improved with medical care. His family is hoping someone may be able to offer him treatment.
"I would be very grateful if someone could consult American doctors about my father's condition," said Sergei, a former gymnast who now coaches in Japan.
Andrianov began gymnastics at age 12, after witnessing a boy walking on his hands at the beach. He went to the gym in Vladimir where he was the oldest boy among the beginners. He decided to quit, but coachNikolai Tolkachyovtracked him down and persuaded him to stay, seeing his potential.
From 1971-1980, Andrianov won 15 Olympic medals (seven gold, five silver, three bronze), 12 world championship medals (four gold and eight silver) and 18 European championship medals (10 gold, six silver, two bronze). His all-around titles include the 1975 European Championships, the 1976 Olympic Games and the 1978 World Championships. He is ranked third behind only fellow Soviet gymnastLarisa Latynina(18 medals) and U.S. swimmerMichael Phelps(16 medals) on the all-time Olympic medal count.
After his retirement, he dedicated his life to gymnastics. He served as the head coach of the Soviet junior men's team from 1981-1992, judged internationally and was elected president of the Soviet Gymnastics Federation in 1990. He is married to two-time Soviet Olympic gold medalistLyubov Burda.
In 1994, he accepted the invitation of former rivalMitsuo Tsukaharato coach in Japan. One of the gymnasts he coached was Tsukahara's own son,Naoya Tsukahara, who helped Japan win the team title at the 2004 Olympics.
In 2001, Andrianov was inducted into the International Gymnastics Hall of Fame.
Andrianov returned to Vladimir in 2002 to coach at the gym where he trained as a youth, now named after Tolkachyov. Among his pupils was future OlympianYuri Ryazanov, who was killed in a car accident last October, days after winning the all-around bronze medal at the world championships in London. Despite his own illness, Andrianov was able to attend Ryazanov's funeral in Vladimir.
Those wishing to send messages of support to Andrianov, or those with medical resources who may be able to help, may contact Sergei Andrianov atsa2525@hotmail.ru.
The 15-time Olympic medalist, 57, is suffering from multiple system atrophy (MSA), sonSergei Andrianovtold IG.
"The diagnosis is olivopontocerebellar degeneration, terminal stage," Sergei said. "His illness is fatal and he will not have long to live, the doctors said."
MSA is a rare progressive neurodegenerative disorder similar to Parkinson's Disease. It is characterized by motor control symptoms such as tremor, rigidity and loss of muscle coordination, according to the U.S. National Institutes of Health.
Beginning with weakness on his right side, the disease has severely disabled the elder Andrianov, who is confined to his bed at his home in Vladimir, Russia.
"His condition is bad. Very bad," Sergei said. "He cannot move either his arms or legs, and he cannot speak."
While the disease is terminal, the symptoms can be eased and quality of life improved with medical care. His family is hoping someone may be able to offer him treatment.
"I would be very grateful if someone could consult American doctors about my father's condition," said Sergei, a former gymnast who now coaches in Japan.
Andrianov began gymnastics at age 12, after witnessing a boy walking on his hands at the beach. He went to the gym in Vladimir where he was the oldest boy among the beginners. He decided to quit, but coachNikolai Tolkachyovtracked him down and persuaded him to stay, seeing his potential.
From 1971-1980, Andrianov won 15 Olympic medals (seven gold, five silver, three bronze), 12 world championship medals (four gold and eight silver) and 18 European championship medals (10 gold, six silver, two bronze). His all-around titles include the 1975 European Championships, the 1976 Olympic Games and the 1978 World Championships. He is ranked third behind only fellow Soviet gymnastLarisa Latynina(18 medals) and U.S. swimmerMichael Phelps(16 medals) on the all-time Olympic medal count.
After his retirement, he dedicated his life to gymnastics. He served as the head coach of the Soviet junior men's team from 1981-1992, judged internationally and was elected president of the Soviet Gymnastics Federation in 1990. He is married to two-time Soviet Olympic gold medalistLyubov Burda.
In 1994, he accepted the invitation of former rivalMitsuo Tsukaharato coach in Japan. One of the gymnasts he coached was Tsukahara's own son,Naoya Tsukahara, who helped Japan win the team title at the 2004 Olympics.
In 2001, Andrianov was inducted into the International Gymnastics Hall of Fame.
Andrianov returned to Vladimir in 2002 to coach at the gym where he trained as a youth, now named after Tolkachyov. Among his pupils was future OlympianYuri Ryazanov, who was killed in a car accident last October, days after winning the all-around bronze medal at the world championships in London. Despite his own illness, Andrianov was able to attend Ryazanov's funeral in Vladimir.
Those wishing to send messages of support to Andrianov, or those with medical resources who may be able to help, may contact Sergei Andrianov atsa2525@hotmail.ru.
vrijdag 29 oktober 2010
Op zoek naar vrijwillige medewerkers
| MSA-AMS.be vzw zoekt - 29 oktober 2010 |
MSA-AMS.be vzw is dringend op zoek naar enkele vrijwillige medewerkers ter versterking van het team.
Door de veelheid van taken is er zeker iets waar je (of iemand van je familie) kan aan meewerken – de vereisten liggen niet hoog, maar vlot werken met e-mail, internet, Word en Excel zijn zeker een meerwaarde. Je kan alles doen van bij jou thuis.
Diverse medewerkers:
Redacteuren voor de nieuwsbrieven.
Voor de taak van redacteur gaat het om het schrijven en corrigeren van artikelen voor de nieuwsbrieven. Dit kost gemiddeld twee uur per week en kan thuis achter de computer gedaan worden.
Profiel:
- enthousiaste en gemotiveerde mensen met een vlotte pen
- affiniteit met actuele ontwikkelingen met betrekking tot MSA en andere Parkinson+ problemen
- goede beheersing van de Nederlandse taal en goede schrijfvaardigheid
- het kunnen omgaan met deadlines en gericht kunnen plannen
- regelmatig (meerdere keren per week) aanwezig (kunnen) zijn op het forum (e-mail / telefonisch)
Administratieve krachten – Algemeen:
De taken van deze medewerkers zijn onder meer het opstellen van teksten en brieven naar sponsors toe en het opstellen van enquêtes en teksten rondom MSA en andere Parkinson+ aandoeningen voor de website.
Profiel:
- enthousiaste en gemotiveerde mensen met een creatieve geest
- affiniteit met het forum van MSA en computervaardig
Vertalers gezocht
Wij zoeken dringend vertalers om te helpen ‘het onderzoeksnieuws’ te vertalen vooral van Engels of Nederlands naar het Frans. Het vertalen kan gerust van bij jou thuis, gezien de contacten hoofdzakelijk per e-mail en telefonisch gebeuren.
Medewerkers voor Fondsenwerving
Ben jij iemand die met weinig woorden veel kan zeggen? Misschien ben jij dan wel die vrijwillige medewerker die voor ons bij verschillende instanties, bedrijven en organisaties, fondsen indient om financiële steun te verkrijgen. Met financiële steun kunnen we onze doelstellingen rond MSA uitwerken zoals het uitlenen van hulpmiddelen en onderzoek stimuleren voor de MSA. Je taak zal er in bestaan om samen met ons, fondsenwervende acties op te zetten, uit te werken en indienen bij de desbetreffende organisaties. Het is zeker een gevarieerd werk met veel voldoening. Denk je dat jij de persoon bent die ons kan helpen, neem dan vlug contact met ons.
PR-functie:
Tot slot zijn we ook nog op zoek naar iemand voor een PR-functie om onze vereniging te vertegenwoordigen bij bvb contacten met sponsors, andere verenigingen en politici. Hiervoor dien je sociaal te zijn en je gemakkelijk vrij kunnen maken. Dit is slechts enkele dagen per jaar, maar doorgaans tijdens de werkuren.
Heb je belangstelling of wil je meer informatie over de functies, neem dan contact op met ons.
e-mail: msa.ams.be@gmail.com of contact@msa-ams.be
Let wel op: Al deze functies zijn enkel en alleen op een vrijwilligers basis!
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