REM Runner’s Note: Narcolepsy advocate and my dear friend, Elaine Butler Armstrong recently organized Ireland’s First Suddenly Sleepy Saturday Narcolepsy Event! I invited Elaine to share this momentous occassion with us.
Elaine’s Guest Blog Post:
It’s always a joy to meet up with the members of S.O.U.N.D. (Sufferers Of Unique Narcolepsy Disorder ) and the children & young adults effected by the H1N1 Pandemrix flu jab (swine flu vaccine ), but March 9th 2013 was particularly special as we all got together to celebrate Ireland’s first Suddenly Sleepy Saturday Narcolepsy awareness event.
The event was held in Dublin and there was a great turn out from sufferers from the length and breadth of Ireland. There were over one hundred people young and old who attended this inaugural event. While it was a spectacular day and a day dedicated to Narcolepsy awareness it was also a day filled with emotion as to meet so many people who suffer from this debilitating illness, no more so than all the children and young adults who contacted this disorder through a vaccine that was given to them to combat the swine flu virus since 09/10 and to this day they are still fighting for their rights with the Irish Government for recognition. As it stands at this moment there are 52 children and young adults who have been diagnosed with this condition from the swine flu jab and sadly this number is growing by the day. (Listen to Radio Interview here)
When all these people get together it’s like one big Narcolepsy family. The love, support and encouragement shared among these people showed throughout the day with laughter, story exchanging and phone number swapping.
People with narcolepsy for years shared experiences with the newly diagnosed and help answer any questions they may have. During the day a slide show was on display explaining what Narcolepsy is.
The highlight of the day was playing video messages from Dr. Emmanuel Mignot and Mali Einen from Stanford University, Nicole Jeray of the LPGA tour and of course everyone’s idol, Julie Flygare. These video messages went down very well with everybody who attended. The organisers of the event were very grateful that these distinguished people took time out of their busy schedules to contribute to our day.
During past gatherings and by communicating through our support groups we had noticed that there seemed to be a high number of our members that were very artistic and creative so we decided to incorporate this into our day. We encouraged anyone attending to bring along their pieces of art, paintings, poetry, writings, sculptors, photography or whatever they had to be displayed, as it was a great way for everybody to contribute to the day. For the children there was entertainment, face-painting and an art room set up so they could also express themselves.
But the most important aspect of the day was for people with Narcolepsy connecting together and just being able to talk to likeminded people about this condition and now knowing that they are no longer suffering on their own and to highlight this condition to the people of Ireland and beyond.
REM Runner’s Final Words: Thank you to Elaine, S.O.U.N.D. and all the participants in Ireland’s First Suddenly Sleepy Saturday Narcolepsy Awareness Event. I wish I could have been there in person, but it’s wonderful to share our experiences virtually around the world. Sending wakefulness and big smiles from the U.S.A.