January 29, 2015

In October I was very fortunate to be invited by the Portuguese HD Association to speak at two events: one in Lisbon and the other in Porto – two of Portugal’s biggest cities. The goal: to spread awareness of HDYO amongst families in Portugal!

The invitation by the Portuguese HDA was not unexpected, we had been speaking about coming to Portugal to talk for a while as there is a lot of potential for us to make a significant impact with young people and families there. Having the HDYO website in Portuguese means that we have plenty of educational and support resources to offer young people. We get a lot of views in Portuguese, 30,000 a month, but most of our contact with young people in Portuguese is actually from Brazil and not Portugal - we’ve heard a lot less from young people and families in Portugal. This I wanted to change and there’s no better way than meeting families face-to-face and speaking to them about HDYO.

On Friday 10th October I flew out to Lisbon on the late night flight. My usual routine on a flight to Europe, which is only ever a 2-3 hour flight for me, is to stick the iPod on and either close my eyes and ponder life, or read a book written by far better writers than myself. This flight I chose to close my eyes as I was feeling tired. However, the two passengers sitting next to me spent the entire flight talking, despite not knowing each other, so I ended up half sleeping, half listening to their entire conversation learning a lot about my fellow passengers in the process. I remember them talking about what they were going to do when they landed. Both planned to go get dinner with their partners. At the time I thought that it was ambitious of them to want to go get dinner at 10:30pm. Personally I was planning to get some sleep. However, plans change and after being met at the airport by Filipa, one of the lead volunteers at the Portuguese HDA, who informed me that dinner plans had been made. How could I say no? Despite my tiredness, sleep would have to wait. Filipa is a young woman, who has no family connection to HD, but is a psychologist who now works on HD research and has been involved with the HDA for a number of years. I have known Filipa for a few years as she approached me early on in HDYO’s creation wanting to help translate HDYO into Portuguese. She has been a part of Team HDYO ever since, and a very reliable member at that. Any message from a young person or family member to HDYO in Portuguese is translated for me by Filipa, she is very trustworthy and I have developed a lot of respect for the time and effort she puts in to HD. I was invited to have dinner with the volunteers who run the Portuguese HDA, Helena and Antonio. We had dinner on the riverside in Central Lisbon, which provided us a beautiful setting. I’d been to Lisbon once before on a family holiday back when my dad was well enough to go abroad, but I could not remember what we did in Portugal or where we visited. However, when I arrived by the river in Lisbon the wonderfully historic buildings sparked memories and I was sure I’d been there before and had that déjà vu feeling going on. Over dinner I learned about the running of the Portuguese HDA, which relies entirely on volunteers, 3-4 in particular who give a lot of time to provide a service for families in Portugal. It reminded me, if I didn’t already know it, how difficult it can be to maintain a HDA in some regions of the world where funds are not easily obtainable. I was grateful for the time these wonderful people, such as Helena, Antonio and Filipa put into their HDA to help fellow families impacted by HD. After dinner Filipa dropped me off at my hotel for the night, it was past midnight and I was beyond tired. It was quite a colourful place; literally, the hotel’s theme colour was bright orange. I finally got to my room ready to crash when I realised there were no pillows on my bed. I checked everywhere but could not find any pillows! I had a thought for a moment that maybe this is some sort of Portuguese tradition I wasn’t aware of? I contemplated using my coat or bath towel as my pillow for the night so as not to pester the staff but in the end I did exactly that, and had to call for them to send me up some pillows so I could get some sleep!

On the Saturday morning, after I’d got some much needed sleep and made use of some wonderful pillows, I sat in my hotel room and worked on my presentation, which was to be delivered to an audience in just a few hours. I’d given a couple of talks to professionals recently that had gone well but I’d given them the short version of my presentation and I’d decided that this weekend I should give the whole story to make connections with young people and families. I wanted to give these families an honest insight into my personal story, how HDYO was created and what HDYO offers for families and young people now. When I talk to anyone about HDYO I feel the need to share my story of being impacted by HD, I think it creates positive connections straight away, people can relate to what you’re saying and what you’ve experienced. That said, it is not always easy for me to talk openly about what were quite dark years for me. But I feel it is more important to be open and honest, to face up to how HD impacted my life and share it with the audience, who will hopefully appreciate my honesty and be able to relate to my experiences.

Editing done, I headed down for a quick breakfast and met up with Filipa, who was joining me on our journey around Portugal for this weekend. Filipa gave me a very short tour of central Lisbon and showed me a delicacy in Portugal which was this little cake that I’m reliably informed is called pastel de belém, which was very nice and creamy. You know it is good when people queue out the door and round the street corner like maniacs for it. We then headed to the event location that turned out to be an incredibly beautiful cultural building in the heart of Lisbon which the association had managed to get for free. Now, one important aspect to remember when giving talks to an audience that doesn’t speak your language as their first language is to have a good translator! I did not know who would be translating my Lisbon talk until Filipa told me that Andreia (right) would be coming to act as translator for me during the event. I was pleasantly surprised to hear this as I had already met Andreia before, in fact she too is a HDYO volunteer. Andreia had participated in a project we did in Sweden last year in which we toured a HD lab and interviewed HD researchers about their work, she had volunteered to do the project and had done a wonderful job with it. I was very happy to see Andreia again and I knew she would be great at translating the talk. Translating a talk is a very difficult task, you have to think quickly, remember what the person has said and then translate as best you can that message to the audience. Things can easily get lost in translation. But Andreia was very capable and I had no doubt that she would be brilliant, which indeed she was. I was first speaker, and the keynote speaker of the event. There was a crowd of around 30 family members. Attracting a crowd is not easy for HD events, especially local events, so we were all happy to see a number of families in the audience. I gave my talk and felt very relaxed up on stage with Andreia translating my very poor jokes. It took about an hour, twice as long as usual due to the translation, but nobody fell asleep as far as I could see and time seemed to fly by. My talk was not the only one for the event, Filipa gave feedback from the recent Euro HD Network conference (a very big HD conference) and to finish the event we had a taekwondo group come and give some basic lessons on taekwondo. Confused? Well it was all about balance, and the thinking was that people with HD may benefit from the type of exercise taekwondo requires. It was quite interesting, although I was an easy target for a volunteer and obviously my taekwondo was a bit rusty as I’d never done it before. After the event I got some really great feedback from some of the families that could speak English to me, including some young people. Many expressed their delight at having such a resource as HDYO available for them. We try to spread awareness of HDYO as much as we can, but nothing beats getting in front of an audience and sharing the HDYO story. I shared the identity of HDYO as something made from the work of young people and families impacted by HD who simply want to help each other. It is an identity many HD family members relate to.

There was little time to reflect on the event in Lisbon as that night we travelled to Porto ahead of the next event. To get to Porto, Filipa and I had to drive for around 3 hours on the Saturday night. By the time we arrived it was, again, quite late and I was, again, very tired. However, once again, Filipa invited me out for dinner, this time with her partner. How could I say no? I was exhausted, but we had a lovely meal in Porto city center. Porto was a city I knew little about other than their football team, which was managed by Mourinho at one point and won the Champions League under him (if you don’t know your football/soccer this will mean nothing to you). Porto is a beautiful city located on the coast. I only got to see a small part of the city that night for a very short amount of time. In fact, all I remember is the traffic jam at 11pm on a Saturday night and the crazy fun run that seemed to be going on, which meant we saw lots of people dressed in very colourful gear.

I managed to get a few hours much needed sleep that night, without needing to ask for any pillows, before getting up, grabbing some breakfast and heading to the final event in Porto. The event was being held at a genetic center which had a lovely room for us to use. Preparation for me was very limited this time around as I had done all the work previously for Lisbon. Any worries about how many people would turn up were soon forgotten as one by one, families began arriving and taking their seats. We actually had more people than the Lisbon event, with around 35 people attending. My translator this time out was Claudia (right), another HDYO volunteer translator. Claudia has been one of the most active HDYO translators and is one of the main reasons why HDYO is available in Portuguese. I made sure to mention this during my talk as I wanted to highlight the significant impact people can make when they get involved and give some of their time to help their community. I’d never met Claudia before so it was an honour for me to get that opportunity to thank her for work she has done for HDYO. The talk was another success and this time I could almost feel the appreciation of the Portuguese families when I spoke about why I was so determined to make HDYO a multi-lingual resource. They understood better than most why that is so important. If we hadn’t made that effort to be accessible for all, then these families I was presenting to in Portugal would get no benefit from what HDYO has to offer. I was incredibly grateful to be able to stand up there and tell them HDYO is available for Portuguese families and I got the impression from the faces in the audience they were equally grateful for our determination on the language front. We ended the event this time with some Zumba from a wonderfully charismatic woman called Sandra. Needless By the time Zumba was done I was ready for my next nap.

When I do presentations at HD family events it is often difficult to get many young people turn up. It is mostly family members who attend. Of course, I’d love to see the room full of young people but it is not the reality of how the HD community is currently. It is a big step for people to attend a HD event. I can remember when I went to my first HD event, I was terrified to go inside the hotel, but I did and I’ve been going back every year since. If this is you, I encourage you to keep trying to make that brave step, you won’t regret it. That said, speaking about HDYO to family members is hugely important as they are often the ones who, if we earn their trust, pass on HDYO as a resource to young people in their family. Many families struggle with being open about HD. It’s always my hope that when I talk openly about my challenging experience of growing up with my dad having HD and how young people cope better with HD when it is openly discussed in the family and the young person has access to educational and supportive resources, that families will take that message back home and feel encouraged to be more open about HD with their own children. I think, for the majority, that message does get through and we are seeing a change in a willingness to be open about HD in the family. For me, that can only be a good thing for building understanding and resilience amongst the young people in our community.

“Future will tell but you might have indirectly helped 2 or 3 youngsters from my family with your talk. That really takes a weight off my shoulders. So thanks again for that and for being willing to share your story with all that honesty.” – Attendee feedback

As we wrapped things up at the Porto event and headed to a beach bar to relax (tough life), I reflected on the events with great pride and appreciation. Pride that HDYO is able to support young people and families in Portugal, and appreciation because these families took time out of their weekend to come and listen to me rambling on about HDYO. Speaking with these wonderful families at the events it was clear they appreciated what we do and that in turn gives me energy going forwards to do more. I will remember the trip to Portugal with very fond memories and hope to go back sometime to update families. Looking forwards, I am going on a massive tour of Australia in a couple of weeks, in which we will do 5 awareness events in Sydney, Brisbane, Melbourne, Perth and Tasmania. I am hoping these events will be just as impactful as the Portugal events proved to be. Thank you for having me Portugal!

Matt Ellison
Project Coordinator
HDYO