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MEET SYMPOSIUM 2016

The Mitochondrial European Educational Training (MEET) Network presents:

From bench to bedside, and back: Patients MEET Researchers

MEET Symposium 2016, Nijmegen, The Netherlands

 

From bench to bedside and back: Patients MEET Researchers

(January 29-30, 2016, Nijmegen, the Netherlands)

 

Thanks to the support of the European Commission, MEET is organizing on January 29-30, 2016,

in Nijmegen (the Netherlands) a Symposium focused on the most up-to-date knowledge advances

regarding mitochondrial medicine, which will be presented in order to fill in the gap between

basic/clinical research and disease. Indeed, as the title suggests, patients and their associations will

participate next to researchers and clinicians; even more, they and their families will be the real

protagonists of the whole event.

 

The target of this symposium are patients, clinicians and researchers. Communication will

bidirectional: from the patients to the researchers and vice versa with the crucial intermediate role

of the clinicians.

 

All MEET young researchers involved in the project are playing a direct and proactive role in the

process of organization of the Symposium, managing scientific sessions as well as the general

organization. The event will be held in the Auditorium at Radboud University Medical Center.

 

Free registration!

 

Deadlines: January 15, 2016.

Here the official agenda and the registration link.

 

Fellowships:

Please, read carefully all information before you apply!

The MEET Consortium offers 15 fellowships (covering travel, accommodation and subsistence

costs) to attend the Symposium.

Fellowships are addressed ONLY to patients or Representative of Patients’ organizations.

 

Applicants for fellowships must submit their request together with a reference letter from Patients’

organization with whom applicants are collaborating or with a motivation letter with a cover letter.

 

Applications must be sent to serena.paterlini2@unibo.it

Deadline for sending applications: January 4, 2016 at 18.00 (Brussels time)

 

Within the context of a deep collaboration between various European fundamental and translational

laboratories, the MEET project represents a platform for the training of 14 young scientific

investigators in the field of mitochondrial medicine.

LATEST NEWS

21/03/2016

 

An essay on 'influence'

 

Dear MEETers,

I read today what you had hoped to achieve at Nijmegen on your webpage. In response to this and in a response to 'cause and effect' i wish to answer to your achievements.

Remember i am aged 63yrs of age from a very small country that was always poor, not advanced like so many other european countries. We celebrate only 100yrs of independence this coming easter and we celebrate our national day tomorrow St. Patricks day. For this, many monuments and water courses will be glowing green in our honour around the globe. For some reason the world loves the Irish, (it rather defeats me this, but they do)! I am lying on my bed right now Meeters.  I know one of you may be rock climbing, and i know others may be 'in training' for running - for us! I am thinking of you all. Remember that line up at the end of the symposium as you were given a 'clap clap' from us looking on? What do i remember? I remember Serena being a type of wee female 'jesus' not washing my feet exactly but as sweetly she was putting my feet up so they felt good  when we returned to the talks in the auditorium and peeling off my slippers. My feet cannot cope and do not like being enclosed,they burn horribly. My legs cannot cope being at right angles and this is the way i normally sit. But to have a young lady, unknown to me smile nicely and ask me if i am comfy and making sure i am comfy is a very new experience entirely. No one has ever treated me like this. No one has ever accepted me like this, ever. No one has even made Ann visible let alone 'make mito visible' in such a way. All through kindness and youth and a desire to engage and to touch hearts. Do you realise how much you have touched hearts? Do you fully realise how long that for ever now soft white floaty feathers of gentleness wafts in my brain as I think of you, that wonderful sort of love there for you from me.  I was born in a small country which i have only left twice in my life for foreign lands.  I was born deafened and grew up with no hearing aids at all. I am profoundly/severely deafened since birth from congenital rubella syndrome, another rare disease claimed eradicated but not so. It is not. I was also born 'different' possibly because of rubella.  I was a scared child and grew to be a frightened adult.  I hid away from the world for decades. I was creative and painted in oils and exhibited to much acclaim and I wrote and had published a few childrens books which I also illustrated, some made into kids tv programmes.  I also got into film school in the UK but was too shy to go. I worked hard but alone away from a maddening world for me. I never saw my family. No one ever called to my home.  I never went to films, theatre, enjoyed meals out, was taken out or had friendships. I was a lost soul. I walked miles and miles every day for decades once the studio lights got turned out I then walked. My company was a dog. Then I got very ill with crohns disease and I nearly died. So thinking of this awful solitude I didn't really want I decided to get help to 'come out and be brave and join society' it worked, I became human for the first time around 2002. I woke up to the fact that I was actually 'ok'. It’s nice to know even if it came late, too late really. Once I found happiness I got sick again....lol! I was left lying in bed with no one ever trying to find out what was wrong with me. I researched, a bit like you are doing now. I did it alone and watched my blood results. I researched the high markers and the different levels until I thought I had nailed the malaise. I then fought to get out of Ireland and by this time I could not walk at all and was in that wheelchair all the time. I got out to the UK where I was diagnosed with sjogrens syndrome. I lost all my teeth through disease.
At one point the irish health system left an attractive middle aged woman with two teeth either side of her main two front teeth and that alone in her mouth.  They left those 'fangs' for two years. Finally they pulled them and gave me dentures. I learnt to walk again, alone on a very long pier by the sea on the east coast of Ireland. I could only walk a few hundred yards each time if that and when I did I rang my twin in the UK where she lived and told her how far I had made it that day. A year after my first 'out' to the UK hospital I went back. No longer in the wheelchair or on sticks I walked into that doctor's room unaided. With outstretched arms he exclaimed 'oh, my miracle patient!' I was! When all agreed I had come to their unit 'a mess' and now the joy was full felt by all. I then did more research and found fabulous Prof. Michael Farrell in Beaumont Hospital who was interested in mitochondria.  He was a pathologist there, he befriended me and suggested I have a  muscle sample taken and he had it sent to Newcastle. Three years after this he told me he had not known that he was married to a girl who was in my class in school!  We had struck a great friendship.  He retires this year and an honourable man not afraid to use swear words! But joy was nothing to match meeting all of you in Nijmegen. I had been having a dreadful time in Ireland before I flew away from it all. I came to Nijmegen very tired already from stress. I hired a scooter and us twins belted around the town, watching for all the traffic going in all the wrong direction! (we drive on the proper side of the road!!) I was in a bit of a heaven I think. But that wasn't really the heaven now was it? - you were. The fun, the faces, the engagement and the chat. The need and wish to encourage, to learn and to hear was immense. I met a mito patient from Scotland, Germany and also Holland. I met those who could tell me about how it all works in their own country and I linked back with Elja van de Veer and cooked a plan for Ireland. I met Serena and the 'Medicine Man' and far more besides. But the day a young pretty woman from Bologna lifted my feet to place gently on a chair and remove my fluffy slippers marked me for good in this heart of mine. She will never go away now I do not think. Carved there I say now forever. But the swirl of white feathers will represent all the Meeters. You gave me SO MUCH, words can never describe it.  You were to me, wonderful. All of you.  I think the world of science for such a disease as this is in very good hands now. It leaves me joyous. It has given me personal strength and when I had had a terrible life on such things I cannot ever divulge to you I am afraid,  I am now pleased to say my faith in humankind has been ignited.
I have been very bruised and hurt by life, punishing experiences and events, time and isolation.  Not anymore. It’s all changed. For good.  Forever. By you, all of you. With thanks. So, for tomorrow remember Ireland and I will remember you....

 

Ann Kennedy

 

This letter was sent by Ann Kennedy, one of the MEET Nijmegen Symposium mito-patients participants awarded (together with her twin sister Margaret) with a MEET  full-fellowship. The MEET Consortium decided to share this letter for underlying, once again, the importance of communication among patients, researchers and clinicians and the importance of patients' direct participation in research. MEET, together with the International Mito-Patients (IMP) Network, will support Ann and Margaret in their fight for asking Irish mito-patients’ human rights respect.

 

Go girls, go Fast! Go for Irish mito-patients!

 

For further info on Ann and Margaret Kennedy’s activities follow them on their blog here.

 


 

22/01/2016

 

 

 

 

 

 

 

 

 

Ann Kennedy and her twin sister Margaret.

For surfing on their blog please visit http://awnyahdaysay.blogspot.it/

 

 

Dear Miss Paterlini,

(or that could be just Serena!) my twin sister and myself live in a small village in the Republic of Ireland. We are being treated and investigated by the Mitochondrial disease unit in Newcastle UK. We both are passionate about advocacy and campaigning for the rights of those with disabilities.in fact Ireland is only one of three in Europe who have not yet ratified the Human rights convention on the rights of those with disabilities. ALL disability groups have been campaigning for this for almost ten years. My twin and I by experience now have full knowledge of how poorly those with Mitochondrial disease are cared for in Ireland. We beg to know more, understand more and bring back more to the service of those in Ireland. the situation is very bad here there is NO consultant who is specially trained in Mitochondrial disease in Ireland. Most have to go abroad for help, through the inter-governmental schemes, or do so privately. Obvious despair is rife within groups in Ireland struggling with the rare disease of Mito disease. We both have heard their stories. (…)

Me and my sister will bring back all we hear at MEET. We are positive, sick, wheelchair users, grumpy, alive and spirited. We are advocates, enthusiastic for change for we have both in our own disease been brought to the depths of despair. I would relish the fellowship for Meet, to allow my twin sister and me to travel. We are not able to afford this travel etc. by ourselves. I never worked as I always was unwell and now we have to struggle with a bad and poor healthcare system. We would use this travel to gain insight we can then bring back to Ireland. We are going to Honour the committeemen the IMP has stated to come to Ireland and try, attempt to bring awareness here after i invited them to do so. We are going to be the people we want to be, make changes in Ireland for the Irish Rare disease group of mitochondrial diseases. I hope my inspirational letter for fellowship will be considered and accepted.

And as we say here in Ireland 'nothing ventured, nothing gained. 

GOD LOVES A TRIER.

 

Ann Kennedy motivation letter sent us for attending the MEET Symposium.

We asked Ann the permission of publishing her motivation letter, we decided to put it on line,

in order to underline once again, the importance of creating a bridge among researchers,

patients and clinicians.
Ann and Margaret, we are waiting for you in Nijmegen!

 

***

 

List of MEET Fellowships awarded for attending the Symposium

"From bench to bedside, and back: Researchers MEET Patients"

that will be held in Nijmegen (the Netherlands) in January 29-30, 2016.

You can find all the informations about venue & travel here.

 

We are very glad to announce that, thanks to EC support, 11 fellowships addressed to patients or to their Representatives, have been awarded!

 

 

Name

Surname

Country

1

Cristina

Catoni

Italy

2

Ann

Kennedy

Ireland

3

 Margaret

Kennedy

Ireland

4

Antonio

Sánchez Alcazar

Spain

5

 Jain

Mukesh

India

6

Jasna

Ivkic

Austria

7

Marina

Tsartsara

UK

8

Matthew

McLaughlin 

UK

9

Blasko

Dimkovski

Germany

10

Wil

Reimer

the Netherlands

11

Domenico

Porcelli

Italy


 

21/01/2016

 

SYMPOSIUM'S VENUE & TRAVEL INFORMATION

 

The MEET Symposium

"From bench to bedside, and back: Researchers MEET Patients"

is coming soon!

 

You can find all the venue & travel informations here.

You can also download a paper copy on the Symposium MATERIALS below.

 


06/01/2016

MEET SYMPOSIUM 2016
From bench to bedside, and back: Patients MEET Researchers
Nijmegen, the Netherlands

DEADLINES EXTENSION

The MEET Consortium is glad to announce you that deadlines for registering to the Symposium have been postponed to

 

January 15, 2016 at 18.00 (Brussels time)

Free registration is online here.

DON'T FORGET IT! WE ARE WAITING FOR YOU!

 

 

 

We take this occasion for wishing you a Happy New Year

 


 

30/11/2015

 

*** SYMPOSIUM FELLOWSHIPS' NEWS ***

 

Please read all of the information carefully before you apply!

 

The MEET Consortium offers 15 fellowships (covering travel, accommodation and subsistence costs) to attend the Symposium.

Fellowships are addressed ONLY to patients or Representative of Patients’ organizations.

Applicants for fellowships must submit their request together with a reference letter from Patients’ organization with whom applicants are collaborating or with a motivation letter with a cover letter.

 

Applications must be sent to serena.paterlini2@unibo.it

Deadline for sending applications: January 4, 2016 at 18.00 (Brussels time)

 

We are Waiting for your applications!

Good luck Guys!

 


 

26/11/2015

 

MEET SYMPOSIUM FELLOWSHIPS ARE STILL AVAILABLE!

 

DON'T FORGET IT!

 

Here all informations about.

 


 

19/11/2015

 

"From bench to bedside, and back: Patients MEET Researchers" MEET Nijmegen Symposium is coming soon!

 

Don't forget to register to the specific link for free!

 

Deadlines: January 15, 2016.

 

Fellowships opportunities!

Please read all of the information carefully before you apply!

 

The MEET Consortium offers 15 fellowships (covering travel, accommodation and subsistence costs) to attend the Symposium.

Fellowships are addressed ONLY to patients or Representative of Patients’ organizations.

Applicants for fellowships must submit their request together with a reference letter from Patients’ organization with whom applicants are collaborating or with a motivation letter with a cover letter.

Applications must be sent to serena.paterlini2@unibo.it

 

Deadline for sending applications: January 4, 2016 at 18.00 (Brussels time)

 

 


 

19/10/2015

 

The complete program of "From bech to bedside, and back: Patients MEET Researchers" MEET Symposium 2016, Nijmegen, The Netherlands 29-30 January 2016 is now available here.

 

Moreover, the registration link is here.

 


 

01/09/2015

 

The Mitochondrial European Educational Training (MEET) Network presents:
From bench to bedside, and back: Patients MEET Researchers
MEET Symposium 2016, Nijmegen, The Netherlands
29-30 January 2016

                                           

MEET ESRs and ERs are managing the symposium organization. Further information will follow on this webpage. Registration will be open here soon.

 

Facebook page: https://www.facebook.com/events/534903219995435/

MATERIALS

MEET Symposium flyer

MEET Symposium complete program

MEET Symposium registration link

MEET Symposium fellowships

MEET Symposium Venue & Travel informations

How to reach Radboudumc


Posters prepared by the fellows:
Vatrinet R, ESR1, University of Bologna
Trifunov S, ESR2, University of Bologna
Lytovchenko O, ER3, MRC Mitochondrial Biology Unit
Vidali S, ESR4, SALK
Mataković L, ESR5, SALK
Pezet M, ESR6, University of Newcastle Upon Tyne
Giunta M, ESR7, University of Newcastle Upon Tyne
Holzerova E, ESR8, Helmholtz Zentrum München
Sanchez Caballero L, ESR9, Nijmegen Center for Mitochondrial Disorders

Cagin U, ER10, CNIC
Iannetti E, ESR11, Khondrion

Foriel S, ESR12, Khondrion

Mennuni M, ESR13, MRC National Institute for Medical Research

Aoun M, ER14, Fondazione IRCCS Istituto Neurologico Carlo Besta

 

Pictures and videos


MEET Project - Grant Agreement no. 317433 - Start date 14th Jan 2013 - Final date 13th Jan 2017 - Privacy and Cookies policy