A few weeks ago I received an email from the EPDA (European Parkinson Disease Association) inviting me to a meeting in Brussels to start a discussion on public policy toward Young Onset Parkinson (and Parkinson in general). To tell you the truth, since I had already booked tickets to visit my family in the US, I wasn’t planning on going (even though it was an all expenses paid trip). But then I shared the letter of invitation with the two neurologists on our board of directors. They told me that I’d be nuts NOT to go and that this meeting was important for our future growth, so of course I changed my mind, and my ticket, and went.
The two day conference or meeting or whatever you’d want to call it, started off with a photo exhibition in the EU parliament on YOP (that’s young onset Parkinson, FYI!). I met some really amazing people there, including Alex from Italy, who runs a program for people with Parkinson, which I hope to attend (2 weeks at a resort sounds like fun!), Gary from Ireland, Elisabeth from Denmark, Claire from England and many more. It was inspiring to hear about their challenges in facing Parkinson, and their courage to try to (and very successfully, for that matter) make a real difference in Parkinson care and in the lives of Parkinson patients in their home country. Actually, to correct that sentence, it was more than inspiring. I learned a lot from others’ experiences, and hopefully we’ll be able to collaborate on future projects, for the benefit of PWP in all countries.
Okay, back to the storyline. Back at the hotel- a lovely two star place smack in the middle of town; the owner, who manned the reception desk, was extremely helpful – I spoke with Alex, founder and director of the European Parkinson Therapy Center in Italy. From what he told me, and what I heard from others who have been there, his center is how I’d like our Center in Jerusalem to look like in 5 years time.
The following day, it was off to the EU parliament for a session with Irish MEP Marian Harkin, and then lunch and discussion about what we can do to raise awareness and bring about change.
Time will tell if it was all just a lot of talking, or if the discussion will make a real impact in how Parkinson is treated.