Our events
MPS- Meeting on the International MPS-Day
14 – 16 May 2021
Together we are celebrating the International MPS-Day (15 May) in Vienna.
In 2020 we wanted to celebrate our 35th birthday in Vienna, which was unfortunately not possible due to the coronavirus. But we are confident that we will meet this year at the International MPS- Day and offer our families a varied and colourful programme. A bit of everything: zoo, culture, action, good food, good discussions and of course surprises!
And what speaks against celebrating our 36th birthday? Nothing. Then let`s do it!
More details for our members on the invitation. Registration is now possible in the MPS-office.
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>> The current events for 2021 are currently only available in German.
Below you‘ll find detailed information about our activities.
If you want to register, send an meail to office@mps-austria.at entering the name of the event in the subject line.
We are offering the following activities in 2020:
Below you’ll find the individual events in that order (according to date). All our members get a written invitation.
Contact the MPS-office if
- you are a member and haven’t received an invitation
- you are not a member yet and want to participate
- you want more information
MPS-Jubilee Celebration 35 years MPS Austria
We are celebrating on the International MPS Day – 15 May 2020 in Vienna – POSTPONED
1985 – 2020… … that’s how long we have been here for MPS families and their children. A time where things have changed, where even some therapies have come onto the market… A time where much has remained the same, above all our decision to give support with all our strength and energy, to be the contact point for MPS families (and people being concerned). AND THIS IS REASON ENOUGH TO CELEBRATE – with our families, our friends and our longtime loyal and faithful companions.
More information together with invitations will follow as soon as possible.
MPS Winter Meeting
28 February 2020 , from 6:00pm – in Vienna / meeting point to be defined in the invitation
On 29 February we celebrate the Rare Disease Day. On the occasion of this day, the team of Pro Rare Austria organises the Rare Disease Dialogue on Saturday afternoon at the Museumsquartier. Of course we will be there as big MPS-family!
In order to enable as many members as possible to come to Vienna, we combine this meeting with our MPS-winter meeting: we ask our MPS families to meet up beforehand. You will shortly receive a personal invitation from us by email concerning this program.
If you are not a member of our association yet but wish to come along, please contact our MPS-office. We are looking forward to you!
Rare Disease Dialogue
29 February 2020 from 01:00 pm to 04:00 pm at the Museumsquartier – Arena 21 and Ovalhalle (Vienna)
The Rare Disease Dialogue is the follow-up event of “The March of Rare Diseases” respectively of “The Feast of Rare Diseases” that took place for the first time in 2017. Again, this year a diversified program including culinary treats are waiting for you!
Anna and her team ensure that all children will have a lot of fun.
For more information click HERE.
MPS-Mothers take off some time
POSTPONED
The MPS-mothers‘ time out has become a fixed part in our annual program. Why? Simply because it’s necessary.
For: MPS does never only affect the child / the children, MPS affects the whole family – especially the mothers. It’s them who take care day and night, every single day, the whole year through without a break, nonstop. They almost identify themselves with the children: If the child doesn’t feel well, mother doesn’t feel well. Many of them don’t even recognize what great job they do every day and never think of themselves. As long as the child is well.
But what when mom is worn out?
We know what great jobs moms do every day, jobs that often go far beyond their strength. That is why we again invite them to a special weekend this year. And although it is only a few days in the year, the effect is clearly visible. It’s a unique experience they are all looking forward to and will live on for a long time.
It’s a time to enjoy the fellowship with other mothers, no explanation needed because they understand each other, they know what it means to live a life with MPS. They help and support each other by sharing their experiences, prepare themselves for what is yet to come, they laugh and maybe cry together… just the way it happens.
16 mothers are looking forward to seeing each other again on this special weekend. They deserve this little time-out from their exhausting daily routine more than anything else.
The participants are invited personally. If you are not a member of our association yet but wish to take part, please contact our MPS-office. We are looking forward to you!
Vienna Sports World – CANCELLED
In 2020 MPS Austria is again part of the VCM – Charity and is represented with an information stand at the Vienna Sports World. We are looking forward to meeting many people, spoiling our MPS running teams, informing anyone interested about MPS to increase people’s awareness. Whoever would like to come and help is welcome.
Inclusion Run as part of the VCM – CANCELLED
Last year we took part in the inclusion run with 40 participants – a special highlight for us all. Simply fantastic, great atmosphere, great motivation and in the end we were all winners and proud to have managed a distance of 800 metres – with MPS or because of MPS!
Apart from that, this event was in any case a highlight – thanks to Maria, who generated a huge media hype with her training video. The Austrian Broadcasting Corporation, ORF, made a film in advance about Maria, which was subsequently shown in different programs on TV. Why? Because she, as hero of the VCM 2019, was given the honour of firing the starting gun.
We want to be part this time as well and ask all MPS families, who would like to join the inclusion run, to contact the MPS office.
Vienna City Marathon – CANCELLED
Ready – steady – do good!
Many people love running. MPS-children don’t. But YOU can put on their shoes and run for them and do something good. You can dedicate your sportiness to our MPS-children, because we are part of the VCM charity and appreciate your support! Start at the VCM 2020 for MPS-children. In doing so you support our work and make all the difference for our MPS-children: more mobility, less pain and often even time – time to live.
You can register as charity runner for MPS-children and start your own fundraising page. As a thank you for your personal commitment, you will receive a race packet:
- durable funtional shirt
- multifunctional bandana
- drinking bottle
- Meet and greet with our MPS envoy Wolfgang Böck at the VCM party.
Please collect a minimum of € 300 with your friends and associates (marathon or half marathon) or € 500 (relay marathon)
Click HERE if you want to read more, donate or start your own fundraising page.
MPS-Therapy Week
18 July – 25 July 2020 – St. Johann / Salzburg | postponed to 28 August – 04 Septembre 2020
The aim of the therapy week is to improve the quality of life of MPS-children through offering specific therapies, to make life easier for MPS-families, to bring joy into their life and make good memories.
This year the therapy week is in St. Johann / Salzburg for the first time. We were able to attract the hotel “Alpenland” (sister hotel of “Sporthotel Alpenland / Maria Alm, where we have already been three times) as partner and are looking forward to the good cooperation with Robert Schimak, the hotel manager. The hotel is well suited for our needs, there are enough rooms for our range of therapies, particularly worth mentioning is the big indoor swimming pool and the beautiful garden, which the children will be very fond of.
The program is similar to those in previous years – we are working with about 15 therapists and just as many childcare workers. More details to come at the latest by early March.
The participants are invited personally. If you are not a member of our association yet but wish to take part, please contact our MPS-office. We are looking forward to you!
Registration deadline is 1 May 2020.
The aim of the therapy week is to improve the quality of life of MPS-children through offering specific therapies, to make life easier for MPS-families, to bring joy into their life and leave a great memory.
This highlight of the MPS- year takes place in the province of Salzburg, this time in St. Johann in Pongau. In the midst of the province of Salzburg, the small town St. Johann in Pongau and its district Alpendorf provide a diverse program for an unforgettable holiday. We can look forward – to a picturesque village and a great hotel where we are most welcome
MPS-Meeting vs MPS-World Congress
31 July – 2 August 2020 – Barcelona | postponed to 30 July – 1 August 2021
2020 is an even-numbered year – which means that there will be an international symposium. The symposium is held in Europe this year, host is the Spanish MPS Community and venue is Barcelona. Since Barcelona is not that far away and can actually be reached easily, there will be no MPS-Meeting in Austria this year.
Instead, we want to motivate our families to register for the congress. A congress is the best opportunity to get the latest information, research results and scientific evidence from first-hand. Additionally, it is the best chance to get to know affected families from all over the world. It has always been nice to see how quickly global friendships develop, be a source of strength, support and help. The best physicians and scientists in the field of mucopolysaccharidosis and similar diseases (e.g. mucolipidosis, mannosidosis) will be on site to hold numerous lectures.
The World Congress always consists of two components: a scientific program and something a bit lighter for families and, of course, combined sessions. So there is something for everyone.
Conference language is English, simultaneous translations are provided via headphones. The more participants from Austria (Germany) are registered, the greater the chance to get a German translation, which we would like to ensure. The only prerequisite is a minimum number of participants to pay off the costs.
Childcare is of course provided – what would the MPS World Congress be without affected children? We too are going to take our “own” Austrian carers along in order to be able to offer support (and familiar faces) by German speaking carers.+
Those interested are requested to contact the MPS-office – we have prepared a package to facilitate your attendance both organisationally and financially. The conditions for granting financial assistance is the attendance of all speeches at the family program.
More information on program, accommodation and costs under http://mps2020.com
ATTENTION:
- Potential participants are asked to register (via the congress homepage) until 28 February 2020 (validity of the early bird rate)
- Prior registration is required for any help regarding the organisational aspects (registration, booking the flight…) until the end of March in the MPS-office.
If you are not a member of our association yet but wish to come along, please contact our MPS-office. We are looking forward to you!
MPS Adventure Days
12. – 12 – 13 September 2020
The MPS Adventure Days are especially meant for MPS- siblings (of all ages), but also physically fit MPS- children are welcome to join – we want to support and maintain the interaction and the friendships between the children, adolescents and young adults.
In 2019 we visited the Prater and, at the invitation of the “Naturfreunde” and the “Wiener Stättische Versicherung”, we were in one of the largest climbing halls of Austria on the next day – it was a phantastic event.
Where we are heading for this year has yet to be decided. More information by this summer at the latest.
If you want to join, please keep those days free.
MPS Fathers’ activity weekend
17- 20 September 2020
Fathers deserve just like mothers a special weekend. They need it, because the disease of their children is bothering them, is haunting them just as well. Often it’s the fathers, who have difficulties accepting the fatal diagnosis and suffer unnoticed in silence. It’s generally expected that they are able to handle the situation, to bear it, be strong. Figured wrong, this is certainly not the case, even when they play their part – it’s incredibly difficult for them too to live with MPS. And that’s why we want to give them some time to spend a few days together with other fathers to rest to renew.
The fathers’ weekend is characterized by (sports) activities, like hiking, mountain biking as well as enjoying the relaxing atmosphere, sharing experiences, telling jokes and clowning around.
The location is announced soon. Potential participants – keep those days free!
We invite potential participants personally.
If you are not a member of our association yet but wish to come along, please contact our MPS-office. Registration deadline is the 15 July 2020.
MPS-Project Mirno More
19 – 26 September 2020 – CANCELLED
We as MPS-Austria are part of this project with eight children and teenagers. We are very happy to be able to give our participants the opportunity to get to know the life on a ship in a large community and to make friends across ethnic and social boundaries – but above all, to forget their difficult everyday life that is so hard to live.
Living with MPS is never easy: neither for the parents nor for the affected children and their healthy siblings. Especially the sibling must often step back. Supporting and caring of an MPS- child is intense and challenges the whole family. But also knowing to lose a loved one to this terrible disease is part of their daily life. Being worried about the sister or the brother is omnipresent in a sibling’s life. Feelings of guilt because they themselves are healthy, the responsibility they impose on themselves to protect them and the hope not to lose their sibling to early characterises the sibling’s life. Life with MPS often brings grief and sorrow. Emotions, which children deal with in very different ways. Emotions that should not yet burden a young life.
We invite potential participants personally. If you are not a member of our association yet but wish to come along, please contact our MPS-office. contact our MPS-office.
Registration deadline is the 15 July 2020.
European MPS-Adult-Meeting
15 – 18 Octobre 2020 / Barcelona – Surrounding – POSTPONED
MPS Europe is already organizing the European meeting for adult patients for the 3rd time. 25 participants from all over Europe are invited.
After Germany and Italy, Spain is host for this year’s adult meeting. Numerous workshops and lectures on relevant topics are on the agenda. The opportunity to meet affected adults across borders, to make new friends, to work together in order to achieve something together is something very special. That’s why we again want to invite our Austrian patients and encourage them to take part. Be part, you are going to benefit from it.
We invite potential participants personally. Please make a note of the date!
MPS Adult Meeting
23 – 26 October 2020
Once a year we offer an extended weekend for adult MPS patients. The aim of the event is to share experiences, maintain friendships and enjoy the pleasant therapies in a relaxing atmosphere. This casual get-together enables them to spend precious time together, enjoy the surrounding during walks or the sweet idleness.
Additionally, the meeting allows discussions with the heads of MPS Austria on upcoming problems.
The participants often let themselves in to special adventures, because one feels stronger and braver being part of a group.
According to the needs of the participants we offer workshops, consultations of doctors or even field trips – this year we want to leave the country and travel together to Venice, a journey that many of them would not dare to make if they were on their own. We are looking forward to dazzle their eyes, ears and heart and to leave them a memory for lifetime to be kept in their hearts like a treasure.
“I can’t stay long”, the moment of happiness whispered. “But I put a memory in your heart.”
We invite potential participants personally. If you are not a member of our association yet but wish to come along, please contact our MPS-office.
Shopping counts!
In addition, there are other ways of how to help MPS children when you do your shopping:
- Have you ever heard of amazon.smile?
This link is a donor link: smile.amazon.de is nothing else but the amazon you know. The same products, the same prices, the same service. Smile.Amazon is a simple way for customers to support a non-profit organisation of your choice without additional costs with every purchase.
Click the amazon smile logo, log in as customer and choose the aid organisation you want to support with your purchase. Amazon Smile started on 11 November 2016 in Germany and Austria: Amazon donates 0,5% of the sale price of its qualifying smile.amazon.de - purchases to the selected charity.
This is how amazon customers can support non-profit organisations with 0,5% via the amazon smile program.
Donation accounts:
Main account
Erste Bank: AT89 2011 1847 2581 7800
Account for therapy and treatment (earmarked)
Erste Bank: AT89 2011 1847 2581 7801
Account for scientific research (earmarked)
Erste Bank: AT89 2011 1847 2581 7802
Account for donation mailings
Erste Bank: AT89 2011 1847 2581 7803
Contact:
Society for MPS and related diseases
Michaela Weigl
A - 4612 Finklham 90
Phone & Fax: + 43-7249-47795
Mail: office@mps-austria.at
ZVR: 423245305 | DVR: 10616741
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