We recently held the UK's first LGS Conference at the start of June; it ran over a weekend and we had a great line up of speakers, covering topics from research, precision medicine, transitions, therapies, and more.
Not only did the conference give families a chance to learn about the latest research and developments being made in the LGS field, it also gave families the opportunity to meet one another. They could swap stories and tales and feel comfortable doing it; they didn't have to worry about how their kids would be received or what would happen if they had a seizure as we were all there together and most of us have experienced the same things.
Although no two LGS warriors are the same in their seizure type/activity or even the medication they are on, it allowed families to know they aren't alone and that most of us had been through something similar or were dealing with something similar.
Information was not only shared by the experts but also by the parents who could swap advice on how to get the best out of the care provided for our kids, as well as which services you should be accessing via the council or NHS.
The conference was well received and the feed back from families was excellent. I look forward to organising another conference in the next 18 months. Hopefully we will see even more families attend so our community can grow.
If you live in the U.S.A. and are interested in attending the LGS Foundation's upcoming conference, visit www.lgsfoundation.org/conference for more details.
Thank you to all those who attended the conference and to the speakers who gave up their weekend to speak for us. For a conference summary and slides from the meeting, click here.
LGS mum and chair of LGS UK - www.lgsfoundation.org.uk