Cornelia Pauna

Let’s Run MS away (again - #2)!

(EN)

I decided to do the MS Run again at the Brussels Half Marathon. I noticed that preparing for the half marathon last year gave me discipline that I managed to maintain after the event, which improved a lot my mental health (and fitness level, haha). 

If you want to see my motivation from last year, you can check it out here: European Multiple Sclerosis Platform - Cornelia Pauna

To be honest, I have the same motivation, but I want to highlight some important aspects from EMSP’s currently ongoing projects and why they resonate so much with me. There are 2 projects related to Epstein-Barr virus infection currently ongoing:

• BEHIND-MS: The role of Epstein-Barr virus infection in the pathogenesis of Multiple Sclerosis  

• EBV-MS: Targeting Epstein-Barr virus Infection for Treatment and Prevention of Multiple Sclerosis 

Basically scientists discovered that there’s a link between Epstein-Barr virus (EBV) and Multiple Sclerosis (MS) but it’s not yet clear how one impacts the other. So these research initiatives try to understand how EBV leads to MS development. Here’s the breakdown:

• EBV is very common, in more than 95% in the population

• Almost all people with MS have had an EBV infection before getting their MS diagnosis

• Out of those 95% of the population which have had EBV, only 0.2 - 0.3 develop MS

So the questions of these projects are: why only some people infected with EBV develop MS? What is the underlying mechanism of this process?

I truly believe in a holistic approach and I try to follow that every day. So when I see these initiatives that try to answer difficult questions from a new angle that could potentially help prevent MS onset, I get very curious and want to do my best to support it.

EMSP will contribute on several levels to these projects, such as:

• Involving its MS Community Advisory Board to support in shaping the clinical trial protocol

• Developing a policy brief to prioritize what resulted from the project as being important and influence decision-makers to address those needs accordingly

• Training consortium partners how to effectively engage patience in their research and the importance of doing so

• Co-leading social media campaigns to raise awareness about the findings

• Communicating and disseminating the information in lay language

Any research that is getting us closer to finding a cure and potentially preventing people from getting MS, makes my heart jump and invades my brain with dopamine. I believe EMSP plays an important role in these projects and needs our support to keep it going. So if that sounds exciting/interesting/important for you as well, help me support EMSP’s work with a donation. And of course, if you happen to be in Brussels on November 2nd, come and say Hello to the team at the start/finish line.

(RO)

Am decis sa merg din nou la semimaratonul de la Bruxelles pentru o campanie de constientizare pentru Scleroza Multipla. Am observat ca pregatirea pentru semimaraton de anul trecut mi-a dat disciplina pe care am reusit sa o mentin si dupa eveniment, fapt care mi-a imbunatatit starea de spirit mentala (si fizica, haha).

Daca vrei sa vezi motivatia de anul trecut, poti sa o verifici aici: European Multiple Sclerosis Platform - Cornelia Pauna

Sincera sa fiu, am aceeasi motivatie, doar ca acum vreau sa evidentiez cateva aspecte importante din proiectele curente celor de la EMSP si de ce rezoneaza asa de mult cu mine. Au doua proiecte in derulare legate de infectia cu virusul Epstein-Barr:

• BEHIND-MS: rolul infectiei cu virusul Epstein-Barr in patogeneza (originea si dezvoltarea) sclerozei multiple

• EBV-MS: Vizarea infectiei cu virusul Epstein-Barr pentru tratamentul si prevenirea sclerozei multiple

Practic oamenii de stiinta au descoperit ca exista o legatura intre virusul Epstein-Barr si Scleroza Multipla dar inca nu e clar cum una o influenteaza pe cealalta. Asadar aceste initiative au rolul de a intelege cum virusul Epstein-Barr duce la dezvoltarea sclerozei multiple. Iata defalcarea:

• Virusul Epstein-Barr este foarte comun, mai mult de 95% din populatie il are

• Aproape toti oamenii care au scleroza multipla au avut o infectie cu virusul Epstein-Barr inainte de a primi diagnosticul cu scleroza multipla

• Din cei 95% din populatie care au virusul Epstein-Barr, doar 0.2 - 0.3 dezvolta scleroza multipla

Asadar, intrebarile pe care aceste proiecte incearca sa le raspunda sunt: De ce doar unii oameni care au fost infectati cu virusul Epstein-Barr dezvolta ulterior scleroza multipla?

Cred cu adevarat intr-o abordare holistica si incerc sa o urmez in fiecare zi. Asa ca atunci cand vad initiative care incearca sa raspunda la intrebari dificile dintr-un unghi nou si care ar putea sa ajute la prevenirea debutului sclerozei multiple, devin foarte curioasa si incerc sa ofer tot suportul pe care il pot oferi.

EMSP va contribui in mai multe moduri la aceste proiecte, cum ar fi:

• Implicarea Boardului Consiliului Consultativ pentru a sprijini elaborarea protocolului studiului clinic

• Elaborarea unui rezumat de politici pentru a prioritiza ceea ce a rezultat din proiect ca fiind important si pentru a influenta factorii de decizie sa abordeze aceste nevoi in mod corespunzator

• Instruirea partenerilor consortiului despre cum sa implice eficient pacientii in studiile lor precum si importanta acestui lucru

• Co-conducerea campaniilor pe retelele de socializare pentru a creste gradul de constientizare cu privire la ce s-a constatat in timpul derularii proiectului

• Comunicarea si diseminarea informatiilor intr-un limbaj nespecializat, usor de inteles.

Orice cercetare care ne aduce mai aproape de gasirea unui leac si care ar putea preveni aparitia sclerozei multiple, imi face inima sa tresara si imi invadeaza creierul cu dopamina. Cred ca EMSP joaca un rol important in aceste proiecte si are nevoie de sprijinul nostru pentru a-l mentine in desfasurare. Asadar, daca acest lucru suna interesant/important si pentru tine, ajuta-ma sa sustin activitatea EMSP cu o donatie. Si desigur, daca esti in Bruxelles in 2 noiembrie, vino sa saluti echipa la start/finish.