In September around 250 people gathered in Sofia, Bulgaria. They came from 25 different countries from all over Europe – and even from Oman. The crowd consisted of old people, young people, extroverts, introverts, boys, girls and everything in between. But they all had one thing in common: Huntington’s disease.
The 250 huntingtonians had a whole lot of things – and food – on the program. The EHA Conference Stronger Together kicked off with president Astri Arnesen and her husband and board member Svein Olaf Olsen welcoming the participants at Hotel Ramada. Constantine Economides and Natalyia Grigorova then updated about the situation for HD affected in Bulgaria.
The situation in Bulgaria
In February 2014 the Bulgarian Huntington Association was founded. The country is in other words in a Huntington preface, facing a lot of difficulties.
“The main problem in Bulgaria is the lack of information. And that lack of information spread across several levels. Among health professionals, with a few exceptions, there is a lack of even recognizing the disease because they haven’t seen a HD patient before,” Constantine told the participants.
Eminent speakers had travelled from all over Europe and the United States to update the crowd. Over a period of three days many important topics where brought into light: how to be a child in a HD family, how to use yoga, the implications surrounding genetic testing, frustration, clinical trials, how to behave towards people in late stage HD, how huntingtin lowering therapies work – and a lot more.
HD on the move
In addition to sessions, workshops and discussions – the EHA conference also had a focus on physical activity. Activity is the most efficient “pill” for HD known today. Every morning the participants therefore met outside the hotel, ready to color Sofia with the movement “HD on the move”.
The group was led by Rudolfo Vera, a man thrown out from the hotel lobby for speaking too loud in his megaphone when welcoming the early walkers. With all his enthusiasm he led the group through the streets of Sofia.
Hotel Ramada quickly became notorious for a lot of things among the participants: having a helping staff, a casino at the first floor, a swimming pool and for serving a lot of food.
Both on Friday and Saturday, the program ended with a dinner at the hotel. After being served two starters the first night, some of the participants didn’t even made it to dinner.
Hope for the future
After spending three days together it was a slightly tired, but optimistic group that left Sofia. “The families’ starts to feel empowered,” Constantine Economides stated. A 91 year old woman told Natalyia Grigorova that she was brought out from her sadness: “She said thank you for being there, thank you for helping us”.
Board member Barbara D’Alessio noticed the empathy which had a strong presence: “I have seen many people talking to each other, exchanging their sad stories but also sharing a hope for the future”.
A couple of days later president Astri Arnesen wrote on her Facebook page: “A huge gratitude to all of you who attended the EHA conference! To all the speakers, volunteers and attendees: THANK YOU for your time and efforts to strengthen our community!”
Thank you for joining us in Sofia. Thank you for making our community stronger. We hope to see you next year!