Suddenly Sleepy Saturday 2019
We just celebrated our 7th annual Suddenly Sleepy Saturday Narcolepsy Awareness Day on Saturday March 9th.
The support continues as our narcolepsy family grows larger and this was clear to see in a packed room of people with narcolepsy and their loved ones at the Red Cow Hotel.
While this day is dedicated to narcolepsy awareness, it is a celebration of coming together, being strong and positive through our mutual journey. There is no greater joy than seeing friendships form and a deeper knowledge gained through the connections made at these events.
Tom Matthews welcomed everyone and then Tadgh Kennedy(organiser) gave an introduction to the day and spoke about raising awareness and a Day4NAPS.
It was announced that the 1st World Narcolepsy Day will take place on September 22nd 2019 and guests were asked to fill out the cards on their tables to give us an idea what they want to do to raise awareness on this date along with the 20 other associations worldwide involved.
It was an honour to have Dr. Catherine Crowe, Dr. Barry Kennedy, Dr. Deirdre O’Rourke, Lisa Slattery from St. James National Narcolepsy Service team and Greg Price HSE join us. Dr. Deirdre O’Rourke who is taking over from Dr. Catherine Crowe spoke to us and told us about their plans for the new state of the art narcolepsy centre and the public service that will be available for people with narcolepsy throughout Ireland.
Also joining us was Siobhan O’Daly, director of clinical development at Avadel. Siobhan spoke about the ongoing clinical trials for the once a night sodium oxybate and working with patients through a patient advocacy group to develop the best possible medication for people with narcolepsy.
Our keynote speaker Henry Nicholls author of “Sleepyhead” who could not attend in person but through the power of technology was able to join us via Skype (thanks to the expertise of James Blackwell). Henry gave an in depth view on Narcolepsy through his research and then hosted a questions & answers session.
Ian Valentine McDermott spoke on the challenges of living with narcolepsy, coping with the difficulties he experienced and the support services he received while in full time education. Ian was a great inspiration to not only the young members attending but also to the many parents of children with narcolepsy who saw that with awareness and the correct support anything can be achieved.
It was also a special day as we were proud to announce that Narcolepsy Ireland has now been recognised as a fully registered charity. This has taken many years of hard work to accomplish with the help of many people along the way. A special word of thanks to Philip McComiskey for his dedication in getting it over the line. Introducing the three of the trustees of the charity, Sharron McSherry, Elaine Armstrong (chairperson) & Rachel McComiskey (secretary).
Our registered charity number is 20203137
There were also fantastic displays of photography, school projects about narcolepsy, achievement awards, arts & crafts by people with narcolepsy. These displays are a great way of highlighting and encouraging the many special talents that people with narcolepsy possess.
Days like Saturday don’t just happen without a lot of hard work and dedication from people behind the scenes. I want to mention a very special friend, Mary Fitzpatrick, who set up this event with me seven years ago. Mary couldn’t join us this year so Tadgh Kennedy from SOUND stepped up to take over her role so that this event could continue and be a great success.
Thank you to all the volunteers who contributed on the day.
Organisers Elaine Armstrong, Chairperson Narcolepsy Ireland
Tadgh Kennedy, Secretary SOUND, Sufferers of Unique Narcolepsy Disorder.