The Limerick CDKL5 Charity Walk 2016 took place Saturday, September 24. The aim of the walk was to raise awareness of this rare neurological condition as well as raise some funds towards research for a cure.

Richard Lynch pictured at last years CDKL5 Awareness Day 2014 with Jonna, Emma, Maia and Brendan Malone. Picture: Oisin Mc Hugh

Richard Lynch pictured at CDKL5 Awareness Day 2014 with Jonna, Emma, Maia and Brendan Malone. Picture: Oisin Mc Hugh

Maia Malone, a 9-year-old girl from county Limerick suffers from this rare neurological disorder. As a result of the condition Maia has severe daily seizures, which are not tamed by medication, she also suffers from gastrointestinal problems, visual difficulties, sleep disturbances, apraxia, bruxism, and she cannot talk or look after herself. Maia needs around the clock care by her family and those around there.

All members of the public were welcome to take part in the Limerick CDKL5 Charity Walk 2016 which started at 1pm on Saturday September 24. The group gathered in Limerick’s People’s Park at the tree planted at last year’s event before walking to Arthur’s Quay and returning to the park. Participants were provided with a wish ribbon that they can place on the tree at the beginning of the event.

Speaking at the event Maia’s Mum, Jonna said: “By raising awareness we are hoping that when people know more about CDKL5 and more doctors hear more about it, other children will get to be diagnosed sooner than Maia, Maia was four years of age before she got the diagnosis. The diagnosis has helped us to understand Maia’s condition a bit better.”

Limerick CDKL5 Charity Walk 2016

Jonna Malone and her daughter Maia pictured at the Limerick CDKL5 Charity Walk 2015 with Richard Lynch. Picture: Johnny Baynes for ilovelimerick.

“We are raising a little bit of funds today but that is not the main point of today, today is about awareness raising but the funds that are raised will go towards research for the condition. In Europe, they are doing very positive research about protein replacement therapy that maybe will be a cure for the condition, at the moment there isn’t one; but in time. Any money raised today will go towards funding the research.”

“When more people know about the condition it might be easier to have the diagnosis received quicker for other children. In this world, you have to shout for help if your child has a disability. By having the awareness that this is what our lives are like, it makes it a little easier.”

Another mother from Limerick named Graznya Musial whose four-year-old daughter Malgosia also suffers from the condition attended the event and said, “My daughter needs 24-hour care and it’s really reassuring that there are other families in similar situations to us.”

Both mothers have daughters with CDKL5 and met through the Irish CDKL5 Facebook page and met for the first time in person on the day of this year’s walk.

Also in aid of CDKL5 is ‘The Ultimate Firewalk’ that takes place in Bray, Co. Wicklow on September 30, just one week after the annual CDKL5 walk in Limerick.

CDKL5 is a rare X-linked genetic disorder that results in early onset, difficult to control seizures, and severe neuro-developmental impairment. CDKL5 is classed as rare disease however, more and more children and indeed adults are being diagnosed every day.

The CDKL5 gene provides instructions for making a protein that is essential for normal brain development. Although little is known about the protein’s function, it may play a role in regulating the activity of other genes, including the MECP2 gene (or Rett Syndrome). The CDKL5 protein acts as a kinase, which is an enzyme that changes the activity of other proteins by adding oxygen and phosphate atoms (a phosphate group) at specific positions. Researchers have not yet determined which proteins are targeted by the CDKL5 protein.

Most children affected by CDKL5 suffer from seizures that begin in the first few months of life. Most cannot walk, talk or feed themselves, and many are confined to wheelchairs, dependent on others for everything. Many also suffer with scoliosis, visual impairment, sensory issues and various gastrointestinal difficulties. As time has gone on it appears that there might be other symptoms that play a role in the condition.

Ten years ago, Professor John Christodoulou led an Australian research team that studied the DNA of three children from the same family and found a common genetic abnormality occurring on a gene that would later become known as CDKL5. His research was published in the prestigious journal, The American Journal of Human Genetics 2004. Glyn was one of the three children at the focus of Dr. Christodoulou’s study.

Glyn’s Legacy was in his DNA, which helped scientists to begin to identify what we now refer to as a CDKL5 Disorder. Unfortunately, Glyn passed on June 17, 1997, before his disease-causing gene was discovered, but his tragic, short life had an important impact on the children who have since been diagnosed with the same devastating disorder.

You can find more information on CDKL5 here.
Check out the CDKL5 Facebook here.
Read more about our previous coverage of Limerick CDKL5 Charity Walk here.

While you wait for Limerick CDKL5 Charity Walk 2016, check out our YouTube coverage of the Limerick CDKL5 Awareness Walk 2015 below.

 

Limerick LGBTI Pride Festival 2016 got under way last week with a number of special events held for members of the lesbian, gay, bisexual and transgender and intersex (LGBTI) communities in the city, as well as the wider Limerick public.

As always, there was an educational aspect to the Limerick LGBTI Pride Festival 2016. Support meetings will be held throughout the week for youth, adult and transgender groups.

The main event, of course, was the annual Limerick Pride parade, which kicked off last Saturday from City Hall.

The theme of this year’s festival was #UnitedColoursofLimerick and the Parade was led by Broden Giambrone, the chief executive of Transgender Equality Network Ireland. Broden brought many friends from Dublin and after the Parade made an inspirational speech at PrideFest 2016, a showcase of local LGBT culture, held in a beautiful marquee on the grounds of the Hunt Museum.

In 2015, Ireland saw the Marriage Equality Referendum passed as well as a Bill on Gender Recognition; Broden said that although these are welcome changes and are massive steps in LGBTI history in Ireland there is still a lot to be done. Broden says there is a need for hate-crime legislation, increased supports nationally and the revision of the Gender Recognition Act to include all members of the trans community.

“More broadly increased positive visibility is what we need, that is what changes people’s views. Legislation is important but we need to show that as trans people, we are part of Irish society, we are your siblings, your co-workers, your friends, we are your family. We are one element, one aspect of human diversity.”

Pride festivals are a celebration of history, community and acceptance said Broden, who also believes it is the perfect platform to educate society on the LGBTI community, “A lot of people at Pride come from within the community, but you also get a lot of friends, families and allies coming as well, so it is the perfect platform to be talking about these issues and the diversity of the LGBTI community.”

“Being trans is part of the human condition, we should be able to accept that and celebrate it like we do all diversities. Positive visibility is a big part; supporting people in being able to live true to who they are.”

I was honoured that Broden said yes when I asked him to be the Grand Marshall for this years Limerick Pride. There is a need for LGBTI Pride festivals, as long as others in the global LGBTI community are not as fortunate as us in Ireland in terms of equal human rights. We must take a stand for human rights for all. That’s why our theme this year is #UnitedColoursofLimerick. We want Pride to be an inclusive, open and integrated event welcoming all people regardless of their sexual or gender orientation, religion or race. This year we aimed to put the T back into LGBTI, with a focus specifically on advancing the rights and equality of trans people and their families and we succeeded admirably. It was thrilled to be able to see transgendered people walking through the streets of Limerick with the people of Limerick put on the streets waving them on with love.

Limerick LGBTI Pride Festival 2016

Limerick LGBTI Pride Festival 2016 pictured at The main Climax Party at Dolan’s Warehouse, will feature Queens of Limerick, Madonna Lucia and Sheila Fitzpatrick taking to the stage with local acts and with the Dublin queens of Dragged Up. Picture: Edmund McCarthy/ilovelimerick

The Limerick Pride LGBTI Festival 2016 took place starting on Monday July 11 until Sunday July 17 with the Parade on Saturday July 16 and featured a multitude of events from workshops, support meetings and discussions to evenings of music and club nights, to cater to the Pride needs of everyone.

Limerick LGBTI Pride Festival 2016

Limerick LGBTI Pride Festival 2016 – Limerick Youth Service will host Limerick’s first Pride Youth Party at LYS’s Lava Javas Youth Cafe, 5 Lower Glentworth St on Friday, July 15.

A Day in May photograph exhibition was launched in The Belltable, 69 O’Connell Street on Monday, July 11 to coincide with Limerick LGBTI Pride.

Limerick Pride’s official Launch night was on Monday July 11 and finished off in Strokers Gay Bar on William Street with champagne, finger food and dance floor musical treats. Strokers are opening 7 nights during Pride to offer something different on every night of Pride.

On Tuesday July 12 from 1pm to 4pm, Strokers Gay Bar hosted a Trans Workshop. Whether you’re interested in learning to put on make up, pick out high heels or how to create a realistic beard, this was a very special event. Experts were there to show all who attended the skills you need to present in your gender.

 On Wednesday July 13, the Pride Wedding Show, a wedding fair established in 2014 as part of Limerick Pride Festival, took place from 6pm to 8pm, venue TBD. Sharon McMeel, an award winning wedding planner, said about the fair: “We’ll have different suppliers and vendors there, so all couples regardless of their sexual orientation will have a good opportunity to get answers to their important questions if they are considering getting married. With the historic ‘Yes’ vote last year for the marriage referendum, it’s great to be able to look out for all the people who have gotten newly engaged.”

Limerick LGBTI Pride Festival 2016

Limerick LGBTI Pride Festival 2016 – A huge thanks to Shannon Conference and Sports Bureau, Limerick City & County Council and to Fran O’Donell of Futureama Productions for sponsoring this year’s Limerick Pride flags on the Shannon Bridge. Pictured here the flags flying proudly with the Limerick 2020 flags. Picture: Sarah Hayes/ilovelimerick

Wednesday after the Pride Wedding Show, Cobblestone Joes was home to the Limerick Pride Open Mic night. The inclusive atmosphere of one of Limericks top music venues was the perfect fit for the #UnitedColoursofLimerick theme with all singers and musicians welcome for this fantastic music celebration.

On Thursday July 14, Mezz Ladies Night at the Red Hen saw the comeback of the hottest night for girls who like girls with a prosecco reception, DJ and late bar with free admission.

On Friday, July 15 the now traditional event ‘T’was the night before Pride’ took place at Mickey Martins from 9pm-11.30pm. Running since 2008, Mickey Martins returned for another year to host the pre-pride party with guest DJ Aoife Nic Canna. Afterwards it was off to Club Milk’s 3rd Birthday Bash with DJ Gary G.

The annual Limerick LGBTI Pride parade began on Saturday July 16, and brought some extra colour and music to Limerick City Centre, gathering at City Hall at 1.30pm, the Parade made its way at 2.30pm sharp up O’Connell Street, across Mallow Street to Henry Street, past Arthurs Quay Park and returned to the Hunt Museum for PrideFest 2016.

PrideFest 2016 was a showcase of local LGBT culture in Limerick in a lavish marquee in the museum gardens with host Paul Ryder, with special guests Hands in Harmony Deaf Community Choir and back by popular demand Patrick James, Voice of Ireland 2015 winner. Limerick legend, actor, director and playwright, Myles Breen held his annual tea dance, which for many is a highlight of the festival.

That night after Pridefest, the main Climax Party at Dolan’s Warehouse, featured Queens of Limerick, Madonna Lucia and Sheila Fitzpatrick taking to the stage with local acts and with the Dublin queens of “Dragged Up” including Gala award entertainer of the year Victoria Secret, Paul Ryder, Regina George and Pixie, followed by DJ Ruth on the main floor, a “Saved by the 90s” party upstairs and Madonna Lucia hosting her monthly party at Confessions with DJ Bugsy. Three rooms packed with colour, vibrancy and music for all.

On Sunday, June 17, a Prideful Recovery Event was held at GOSHH, 18 Davis Street from 1pm – 5pm with holistic therapies including Reiki, Tarot and angel card readings.

A full line-up for Pride week can be found at www.LimerickPride.ie with updates at www.facebook.com/limerickpride. Tag your photos and comments about this years Pride with #UnitedColoursofLimerick.

For media inquires contact [email protected].

To check out all the updates on Limerick LGBTI Pride Festival 2016 click here.

For more news stories about Pride from I Love Limerick click here.

 

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Limerick 2020 bid

Announcing details of the event at upper O’Connell Street, Limerick were, Catherine Ryan and Laura Malone of Fidget Feet with Limerick localTom Muldowney, Henry Street. Picture: Alan Place/ilovelimerick.

The excitement is building up as the countdown for the ECOC jury panel’s review of Limerick on Tuesday, July 12 starts coming closer. Limerick has got one last chance to push the city’s European Capital of Culture Limerick 2020 bid with a spectacular street party to celebrate the magical journey of the campaign.

While the ECOC jury panel reviews the city and the cultural institutions, thousands of the city’s citizens will get to indulge themselves in culinary delicacies, art and musical culture. The event will start up around midday and finish in the evening.

The public will be treated to various events including the Culture and Chips food carnival on O Connell Ave from noon onwards, a taste of international cuisine with the World Recipe Exchange, and lots of gatherings at venues such as the Hunt Museum, Howley’s Quay and O’Connell Street’s urban garden.

Daniel O’Connell’s whole block on upper O’Connell Street between Hartstonge Street and Barrington Street (the area known as The Crescent in the Georgian Quarter) will become party central as Culture & Chips Takes To The Streets from noon until evening.

If Limerick succeeds, it will indeed be historic. It’ll also be – according to estimates – worth around €170m to the city. Limerick won’t get to enter the European Capital of Culture again for another 15 years so that’s also why there is such a huge push to try and succeed.

The Limerick 2020 bid team makes its final presentation to the panel at the National Concert Hall in Dublin on July 14 and the winner being announced the following day. It’s a tough competition as Limerick competes against Galway, Waterford, Wexford and Kilkenny for the title.

Bid director Mike Fitzpatrick said that now is “the right time” for Limerick to earn the prestigious title. “Limerick is aware that the jury is in town, but it’s not about the jury; it is about having a moment to say, ‘Look how far we have come’ in terms of how culture has formed part of everyday life in Limerick. Whatever happens on July 15, whatever the decision is, culture will remain at the centre of what we do. It has given us so much confidence and belief in ourselves.”

Bid deputy director, Sheila Deegan, said the festive day “may go down as one of the most important days for the city.”

“Win or lose with the Limerick 2020 bid, we have achieved an awful lot and it is time to celebrate so we are asking that as many people as possible to turn out and enjoy this party with us. The journey has awakened a real sense of cultural identity in Limerick and a wider awareness of just how rich, diverse and talented our cultural heritage is. We were Ireland’s first City of Culture and we certainly showed over the course of that magical year just how much Limerick has found its cultural voice and it is now singing from the rooftops.”

SOME HIGHLIGHTS:

  • Limerick Street Food, run with Limerick Council: this weekly pretty market of tents will deck out on Harvey’s Quay on Tuesday 12, 11am to 4pm.
  • For a serving of culture with a side of chips, Culture & Chips Takes To The Streets in conjunction with Limerick 2020 are throwing a street party of food, culture, performance on Tuesday 12, 12.30pm-7pm at The Crescent, O Connell Ave.
  • The new Urban Garden on O’Connell Street will host the Gig in the Garden from 2.30pm: “an eclectic mix of home-grown talent” led by The Harmony in Hands Deaf Community Choir.
  • Hunt Museum Garden Party begins at 2.30pm with face painting and artists creating new works, all to a jazz accompaniment.
  • Children head to Ormston House for the Science Magic Show, 3pm, which promises “an explosive time with chemistry and magic to enthrall”.
  • International class pipe organist David Casson plays in concert free at Sacred Heart Church, The Crescent at 8pm. Part of Limerick Pipe Organ Festival.

Read more about Limerick 2020 here

Follow Limerick 2020 on Twitter  here

Limerick LGBT Community honour Orlando victims

Eileen and Breandán Ó hÉamhaigh, two local LGBTI activists

The LGBT community in Limerick invited the public to attend a candlelight vigil in memory of the 50 people who have lost their lives and those injured in the attacks in Orlando on Sunday, June 12.

There were two vigils being held. The first was held at the Treaty Stone. 

The second candlelight vigil was held in Arthur’s Quay Park, Limerick city at 6:30 pm on Wednesday, June 15.

 The organisers encouraged those attending to spread the word, to bring a candle if possible and to bring rainbow colours, flags or paint so the Limerick LGBTI Community honour Orlando victims in a way that will be colourful and memorable.

There was a minute silence held to remember, reflect or to pray for those affected by the violence in the attack from this weekend.

Limerick LGBT Community honour Orlando victims

All members of the public were welcome to attend; the aim of the vigil was to show solidarity not just for the LGBT community but for everybody who has been affected by acts of terror, violence or oppression in their lives.

“The vigil is being held In solidarity with families, friends, loved ones and LGBT+ community and wider community in Florida, and in solidarity with all the people around the world who have been and continue to be affected by terrorism and all forms of violence and oppression,” said Laura Ryan, head of communications  at Limerick City and County Council.

Limerick Chronicle columnist Richard Lynch, who organised Wednesday evening’s vigil, said the gathering was for all members of society.

“It is a chance for us to reflect on what has happened. It is not just for the LGBTQ community,” he explained. “I chose this day as it is also Irish Aids Day and it is a day that we as a community need to be unified.”

“All of us have been affected by this. Anyone who is concerned about humanity at all, the loss of a loved one, be it a child, a sister or a brother should attend,” he added.

In honour of the victims of the attacks in the Pulse gay club in Orlando which saw 50 people killed and left many more suffering injuries, the Limerick council will be opening an online book of condolences to the public.

The book of condolences will open at 10 am on Tuesday, June 14. You can access and sign the Limerick City and County Council book of condolences here.
You can find more information on Limerick LGBT Pride here.
For more stories related to the LGBT Community, you can click here.

 

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Caseys Centra

Caseys Centra Love Thy Neighbour Summer Carnival launch – Pictured: Jackie Bonfield, General Manager Mid West Simon Midwest Community and Duncan Casey, Mid West Simon Community Ambassador.

Caseys Centra host Love Thy Neighbour Summer Carnival in aid of the Mid West Simon Community and Limerick Marine Search and Rescue takes place on Thursday June 16, from noon until 3 pm, at the Caseys Centra store, Mount Kenneth on the Dock Road.

Munster Rugby star Duncan Casey, actor Myles Breen and Richard Lynch of I Love Limerick will be your hosts for a day of summer festivities with carnival games, free food tastings, drinks, music, prizes and giveaways galore with Limerick’s Live 95fm providing music during their live roadshow.

Caseys Centra are inviting guests to sample their tasty deli food offerings, including Mexican dishes, carvery dinners, sandwiches and salad creations. Carnival games include ‘Test your Strength’ where you could win a signed Paul O’Connell Munster Rugby Jersey, ‘Dunking Duncan’, an opportunity to dunk one of Munster Rugby’s hottest players into a bath of freezing cold water, Hook a Duck and Piñata Bash.

Caseys Centra

Caseys Centra Love Thy Neighbour Summer Carnival MC Myles Breen

All activities on the day are donation based and organisers are pleading for the public to dig deep in order to raise as much funds as possible for two extremely deserving Limerick based charities.

The event concept originated when management from Caseys Centra, located on the Dock Road, saw the positive impact they had on their neighbours Mid West Simon Community after they began donating unused food to the charity’s service users. Caseys Centra decided they needed to do more.  This evolved into a fundraising day for both Mid West Simon Community and fellow neighbouring charity, Limerick Marine Search and Rescue.

Kevin Foley, Manager Caseys Centra said, “Calling the fundraiser “Love thy Neighbour” came from us wanting to show our support for local organisations such as businesses, charities and communities. There is strength in numbers and if we all support one another, Limerick would be unstoppable. We want these charities to know we are there for them and will continue throughout the year to support them unconditionally.

Jackie Bonfield, General Manager Mid-West Simon Community, said, “We are so honoured that our neighbours Caseys Centra and Limericks Live 95fm have decided to support our fundraising initiatives with an event that not only shows the best of Limerick but also stresses the importance of how much we all need love and support from our neighbours.”

Joe Morgan, Chairperson Limerick Marine Search and Rescue said, “This year we are celebrating our 30th anniversary and in the spirit of community, the event really emphasises the importance of local support. Our organisation is volunteer based and we need to raise ongoing funds to continue the work we do.

Fergal Deegan, Marketing Manger Limericks Live 95, said, “We are thrilled to support our neighbours and the work they do. Limerick Marine Search and Rescue play a key part in tracing missing people in Limerick. The River Shannon is the life force of Limerick and this organisation keeps it safe for all of us. Mid West Simon Community reaches out to people who are homeless, at risk of homelessness or experiencing housing difficulties. Both organisations are vital to the Limerick community.”

Love Thy Neighbour Summer Carnival in aid of the Mid West Simon Community and Limerick Marine Search and Rescue is on Thursday, June 16 from noon to 3pm at Caseys Centra and all are welcome. 

Find Caseys Centra on Facebook here
Mid West Simon Community online here
Click here to find Limerick Marine Search and Rescue Facebook page

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BeSPOKE 2016 Limericks biggest ever cycling festival

16/05/2016
pictured at the launch the ‘Bespoke – Limerick’s Cycling Festival’.
Pic: Don Moloney / Press 22

A variety of FREE cycling inspired events will take place across Limerick for BeSPOKE 2016, Limerick Smarter Travel’s cycling festival between 11th-19th June 2016, it was announced today (Tuesday).

For the second year running individuals and groups from schools, communities, campuses and workplaces have the opportunity to avail of funding to help them run their own cycling inspired event.  Limerick’s ‘Bike Week – Event Fund’ will see 18 groups receive financial support to independently run their own BeSPOKE 2016 event. Event fund winners include: Milford N.S., St. Pauls N.S., Shanagolden VTOS, Team Adare Cycling Club, Extern Foster Care, Cook Medical, Wild Atlantic Sports, Cycle4Sick Children, Johnson & Johnson, West End Youth Space, Northside Youth Space, Southill Area Centre, Northern Trust, Southside Youth Space, Sophie’s Journey Foundation, Limerick Milk Market, Mary Immaculate College, & Kileedy GAA.

The highlight event from Limerick Smarter Travel will take place on Sunday June 12th  with registration from two o’clock with the ‘Riverside Family Cycle’ starting at the Irish Estates, passing through the Shannon Fields before turning down the Park Canal and ending at O’Brien’s Park in Clare Street. The family-friendly cycle will be immediately followed by a ‘Party in the Park’ where there will be entertainment for everyone including;

Ireland’s first ‘Cycle Trials’ competition, with 4 class categories from novis to intermediate, hosted by Sean Putt, one of Ireland’s elite cycle trials riders.

BeSPOKE 2016 Limerick’s biggest ever cycling festival

16/05/2016
pictured at the launch the ‘Bespoke – Limerick’s Cycling Festival’.
Pic: Don Moloney / Press 22

The 1916|2016 ‘Best in Show’ competition for cyclists and bicycles from 1916 or 2016, hosted by Richard Lynch, RichardKnows& ILoveLimerick.com

Family music, games, entertainment and refreshments

Elite Cycle Trials rider Sean Putt, said he’s looking forward to bringing the ‘cycle trials’ event to life, the first of its kind in Ireland.

“The event will include three competitive classes, Expert, Intermediate and Beginner, there will be a Novis class for anyone wishing to give cycle trials a go for the very first time on the day,” he said. “The event is being supported by Cycling Ireland, The Hub Bike Shop, National Bike Week, Limerick City and County Council as well as Limerick Smarter Travel. Trophies and prizes for winners will be sponsored by The Hub. We will also be having a ‘cycle trials taster session’ at ‘The Hub’ bike shop on June 5th part of The Hub’s Sean Kelly Charity Cycle and Family BBQ, do come along to get some one-to-one trials advice, to have a practice trial, or to pre-register for the trials competition on the 12th June,” he added.

Speaking following today’s announcement, Richard Lynch, said: “Between the 11th and 19th of June there are a wide variety of BeSPOKE events taking place across Limerick, a celebration and promotion of all that’s great about bikes and cycling, there really is something for everyone. Find out whats happening near you and your family. The ‘Riverside Family Cycle’ and ‘Party in the Park’ will form part of the State Centenary Programme to remember 1916, reflect on the republic 100 years on and reimagine our shared future. The cycle and party will have a 1916|2016 theme and include a ‘Best in Show’ competition, with judges and prizes for those entering their outfits/bicycles in the 1916 or 2016 categories. Do dress up, take part and have fun with friends and family! ” he added.

Donal Brennan, Senior Engineer, Limerick City and County Council commented: We hope to see as many people as possible out and about on their bikes enjoyed the fun-filled week of events during Limerick’s Cycling Festival. The BeSPOKE 2016 events form a very important time in our annual calendar, working with the Limerick community to creatively highlight the positives of cycling not just for recreation but as an integral part of each persons daily travel routine.”

For further information:

Web: Search ‘BeSPOKE’ at www.LimerickSmarterTravel.ie

Check out Smarter Travel on Facebook and Twitter

Leben Building Neurological Centre Acute Stroke Unit at University Hospital Limerick

Colette Cowen, CEO University Hospital Limerick, Gerry Boland, JP McManus Trust; Prof. Niall O’Higgins, Hospital Trust, Una Anderson Ryan, Chairperson Parkinson’s Special Projects and Richard Lynch, I Love Limerick. Picture: Kieran Clancy.

A new era in the care of Parkinson’s patients at University Hospital Limerick has been marked with a ceremony this Friday at the newly opened Leben Building Neurological Centre/Acute Stroke Unit.

A plaque has been unveiled in recognition of the contribution of the Parkinsons Association of Ireland MidWest Branch in developing the unit and the generosity of JP and Noreen McManus and family.

The new unit opened in November 2015 and includes 24 inpatient beds, nine of which are dedicated to neurology, including Parkinson’s, patients. It was completed at a capital cost of approximately €3 million, with additional equipment costs being met jointly by the Parkinson’s Association and the HSE/UL Hospitals Group.

The unit takes up one floor of the six-storey, €16.5 million Leben Building, a project delivered through a development agreement between the HSE and three charities which came together to form Leben Developments Ltd; namely the Parkinson’s Association of Ireland, the Cystic Fibrosis Association of Ireland/TLC4CF and the Mid-Western Hospitals Development Trust.

The unveiling ceremony took place during Parkinson’s Awareness Week and coincided with the launch at UHL of “Meds on Time”, a Parkinson’s Association campaign to ensure the timely administration of medication to patients in order to control their symptoms.

Parkinson’s is the second most common neurodegenerative condition after Alzheimer’s with an incidence of one to two per 1,000 in the general population and one per 100 in the over-80s. It is accordingly estimated that there are approximately 680 people living with Parkinson’s disease in the Mid-West (Clare, Limerick and north Tipperary).

Speaking at the unveiling today, Una Anderson Ryan, Chairman of Special Projects, Parkinson’s Association of Ireland, said the new unit would greatly benefit the region’s growing Parkinson’s population. It was a far cry from the old ward 3B where Parkinson’s patients were treated in an environment unfit for purpose.

“The Mid-West Branch of the Parkinson’s Association of Ireland have spent most of the past decade seeking to have a modern state-of-the-art facility in the region for people with Parkinson’s Disease. Thankfully, and at long last, our desire has been achieved and is evident for all to see at University Hospital Limerick. It has been a long and arduous task from design stage; involving architects and engineers, to financial and legal considerations, the tendering process and consequent monitoring at all stages of development,” Ms Anderson Ryan said.

“We believe that this new Neurological Centre will be a tremendous asset to the people of the Mid-West and the fact that it has been built at no cost to the state is hugely significant. The Parkinson’s Association here in the Mid-West is particularly indebted to JP and Noreen McManus and their family and we thank them for their munificence. The impact of the McManus family on the Mid-West Region is truly awesome and words do not exist to thank them fully and adequately,” she added.

That generosity has benefitted not only Parkinson’s but other neurology and stroke patients in the new unit.

Prof Declan Lyons, Consultant in Geriatric Medicine and Clinical Director, Medicine Directorate, UL Hospitals Group, commented:  “Stroke is becoming more and more prevalent in Ireland as the population ages and is becoming a bigger and bigger part of what an acute hospital like UHL does. The technology, the drug treatment and the management of acute stroke patients has changed dramatically in recent years and that will continue to be the case.”

Leben Building Neurological Centre

Richard with Nollaig Lonergan (Mid Western Hospitals Development Trust) , Sue Ann McManus (Pro-Am), Una Anderson Ryan (Chairperson of joint-committee) at the turning of the sod for the new Leben Building at the University Hospital Limerick in 2012. Picture: Paul Mullins

“That makes it all the more important to have the right facilities to deliver optimal care to stroke patients and that is what this new unit will help us to achieve. We are deeply grateful to the Parkinson’s Association of Ireland, to the McManus family and to all of our own staff who have contributed to delivering this marvellous new unit for our stroke and neurology patients,” Prof Lyons said.

The contribution of the HSE and Department of Health in meeting much of the equipment costs in the stroke unit and in the wider Leben project was also acknowledged. The HSE has in addition met the costs of additional nursing, medical and allied health posts in the new unit, including in speech and language therapy, occupational therapy, physiotherapy and neuropsychology.

Meds on Time

The Parkinson’s Association of Ireland has also contributed to specialist staff training and awareness campaigns around Parkinson’s and the unveiling marked the commencement at UHL of the “Meds on Time” campaign.

Staff nurse Michael O’Halloran is one of seven nursing, physiotherapy and pharmacy staff who, supported by the Parkinson’s Association and UL Hospitals Group, volunteered for a Parkinson’s Disease Nurse Specialist course at London’s South Bank University two years ago. That knowledge is now being applied for the benefit of Parkinson’s patients in the new unit. 

“A working group focusing on the care of Parkinson’s Disease patients is now fully functioning and its aim is to provide up-to-date, evidenced-based, efficient, optimal care to Parkinson’s patients admitted to the ward,” said Mr O’Halloran.

“Parkinson’s Disease is a progressive, fluctuating neurological disorder. It occurs when the cells in the part of the brain that control movement are lost. These cells produce dopamine, a chemical that enables people to perform smooth co-ordinated movements. Without enough dopamine in the brain, everyday activities including walking, swallowing and even smiling are affected,” explained Mr O’Halloran.

“The main treatment for Parkinson’s Disease is medication and there are specific drugs which work by replacing or mimicking the actions of dopamine. Often people will be on a number of drugs, each of which must be taken throughout the day at specific times. These stimulate a carefully timed release of chemicals into the brain to allow a person with Parkinson’s to control their movements. The symptoms and progression of Parkinson’s Disease is unique to each individual. It may have taken a long time for the patient and specialist to establish the best individualised drug regime. Once a medication regime is disrupted, it may take hours, days or even weeks for a person’s Parkinson’s to stabilise .This can have serious consequences for ward management and the treatment for which the person was originally admitted. The patient is likely to require a higher level of care and an extended hospital stay – at a significant cost in both time and resources. There is an increased risk of accidents and falls, and in some cases the originally planned treatment may no longer be possible.  The patient may also feel a loss of dignity and independence as well as the ability to communicate and exercise choice in their care,” Mr O’Halloran explained.

Dr Peter Boers, consultant neurologist, UL Hospitals Group, said: “It is a very well recognised phenomenon with Parkinson’s patients that their symptoms are time-dependent and that they have to take their medication at the correct time. When any patient comes in to hospital, there is a standard hospital prescription chart which has the times pre-specified – be it 8am, midday, 4pm and so on – but that might not suit the Parkinson’s patients. They might need their medication at 7.30am, 11.30am and so on and there is no provision for that on the pre-printed charts. What has to happen is there has to be an understanding among medical and nursing staff at ward level that the Parkinson’s patients medication has to be given at the time they take them at home. The particular time is very important.”

 For more information about Parkinson’s Association Midwest, click here
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Lolas Ball Act for Menengitis fundraiser is a huge success!

At Lolas Ball Act for Menengitis fundraiser – Richard with Leanne Moore, Siobhan Carroll, Founder of Act for Menengitis, Ruth Melling, Lola’s mam, Leah Melling, Lola’s sister, Dawn McGoldrick, Act for Meningitis, Hollie Nagle, Lola’s sister and Ross Nagle, Lola’s dad. Picture: Dolf Patijn/ilovelimerick.

Lolas Ball, an evening to remember Lola Jane Nagle took place this past Saturday in the Greenhills Hotel in aid of ACT for Meningitis. Richard Lynch of I Love Limerick was honoured to host the event with his good friend Leanne Moore and the night was very emotional, filled with love and a huge success!

On April 15 last year one family’s whole world was turned upside down when they tragically and suddenly lost their precious little girl Lola, aged just 17 months, to meningitis.  Nothing could have prepared them for the devastation that losing a child would cause. Since then the family have worked tirelessly to prevent another family from going through their nightmare. Lola’s family wants to ensure that no one faces the meningitis journey alone.

Last June, an unbelievable crowd gathered today the AllStar Ink tattoo parlour, in Limerick City, for a Lola Nagle ACT for Meningitis Fundraiser. €19,924.28 was raised after a number of people donated money, or paid to get butterfly tattoos, in aid of the ACT for Meningitis organisation.

“We never thought meningitis would affect us but it did,” says event organiser and Lolas sister, the inspirational 17 year old Leah Melling.  “We organised this ball to remember our beautiful little butterfly Lola, and to raise funds, but also to raise awareness of Meningitis because knowing the signs and symptoms may just save a life.  We have been overwhelmed by the support we have received from the people of Limerick.”

ACT for Meningitis is a national meningitis support and awareness charity based in Galway.  Set up in 2011 by Siobhan and Noel Carroll following the loss of their 4-year-old daughter Aoibhe to this devastating disease. ACT for Meningitis aims to raise awareness, promote education and provide free support to anyone in Ireland affected by meningitis.

Entertainment was provided by Voice of Ireland contestant Niall O’ Halloran, Ciara Meade, lead singer of the well-known Limerick band Funk Junkies, MizDrea, Tiny Giants and upcoming singer songwriter Aaron Hackett, magician Steve Spade and comedienne Al Foran. Guests then danced the night away with DJs Ian McLoughlin and Party Marty.

People, who did not attend the ball, can still make a difference and offer their support to ACT for Meningitis.

Support Act for Meningitis here

Find Lolas Ball on Facebook

Read more on the I Love Limerick site here

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