Research Motor Neurone Annual Newsletter 2017
Hot off the presses the 2017 RMN newsletter is available now! Please click here to access the newsletter which has a selection of research and fundraising updates and acknowledgements for the year that was. Thank you for all your support, effort and enthusiasm in 2017.
Life Celebration Event
Please see the information below, regarding an event being hosted by Seamus McCarthy, in aid of RMN:
Seamus is hoping to organise a scavenger hunt around Cork city as a healthy alternative to a pub quiz or other alcohol-related event, and in the process raise funds for research into Motor Neurone Disease and motor nerve issues.
VHI Women’s Mini Marathon 2016
Entries for the VHI Women’s Mini Marathon, taking place on Bank Holiday Monday 6th June 2016, are now open! If you wish to run to raise funds for MND research, you can do so on the VHI Women’s Mini Marathon website:
Tim Sheehy and Project MinE
Our thoughts are with Tim Sheehy and his family at this sad time. Tim Sheehy, a well-known Irish businessman, was diagnosed with MND in late 2014. Aware of the gravity of his condition, Tim was interested in finding out about the research being carried out worldwide, and in Ireland, understanding that intensive study of the disease is the only way to get results and improve the prospects of those affected. Tim discovered that researchers in Trinity, led by Professor Orla Hardiman, work at the highest level to investigate MND from many perspectives including genetics, cell and molecular biology and drug development.
Tim, who sadly passed on December 13, wanted one of his legacies to be making a contribution to progressing MND research for the sake of future generations. During the last months of his life Tim, who was involved in a number of causes and organisations and was a highly compassionate individual. He put his efforts towards creating a stronger foundation for MND research in Ireland and internationally through Project MinE – a ground-breaking large-scale international investigation into MND’s genetic causes. To learn more about Tim’s story, please watch his inspiring video.
The 3rd annual Oireachtas Christmas Charity Fashion Show at The Shelbourne on December 8th
Members of Dáil Éireann and Seanad Éireann will swap the corridors of power for the catwalk once again this December when they take part in the 3rd annual Oireachtas Christmas Charity Fashion Show, generously sponsored by Newstalk, in aid of Research Motor Neurone.
Taking place in the appropriately glamorous surroundings of the Great Room at the iconic Shelbourne Hotel on Tuesday December 8th, Teachtaí Dála and Seanadóirí taking to the fashion ramp include Arthur Spring, Averil Power, Cait Keane, Catherine Noone, Eamon Coghlan, Fidelma Healy Eames, Helen McEntee, Hildegarde Naughton, Imelda Henry, Jimmy Deenihan, Leo Varadkar, Lorraine Higgins, Marie Louise O’Donnell, Martin Heydon, Michelle Mulherin, Regina Doherty, Robert Troy, Sandra McLellan, Simon Coveney, Timmy Dooley and Trevor O’Clochartaigh.
Professional models on the night come from Assets Model Agency and hair and makeup will be professionally taken care of by Brown Sugar.
Featuring a roll-call of Ireland’s leading fashion designers and businesses, the impressive lineup of exceptional Irish design talent for the evening includes Heidi Higgins, Jennifer Rothwell, Niamh O’Neill, Helen Steele, Fee G, Claire Garvey, Synan O’Mahony, Jen Kelly, Louis Copeland and Carraig Donn, milliners Aoife Hannon, Suzie Mahony, Carol Kennelly, Jennifer Wrynne & Martha Lynn Millinery, and boutique Myrtle Ivory showcasing Irish bridal designer Patrick Casey.
The Oireachtas Christmas Charity Fundraiser promises an exciting evening celebrating Ireland’s home-grown design talent, while also offering an opportunity to support a very worthy cause – all while enjoying the novel spectacle of Irish politicians in a spotlight of a very different kind to their usual!
Raffle prizes have been generously donated by many businesses including a Carraig Donn luxury hamper, skincare treatments from the Dr. Mulrooney Clinic, €100 voucher for Camile Thai online restaurant, a luxury hamper from Seavite, Lucy Nagle cashmere hat & scarf, 5 pairs of sleeves from Canopi Sleeves and a hat from milliner Aoife Hannon Millinery.
Ireland’s youngest Bridal Designer, Niamh Corazon (18 years old) is making Marietta Doran’s dress on the night.
To add to the excitement and enjoyment of the event, talented 13-year old Cathal Gavin will sing songs from his cd Voice of an Angel.
Tickets to the 3rd annual Oireachtas Christmas Charity Fashion Show at The Shelbourne on December 8th are €50 each and are available to buy from Bernadette in Minister Deenihan’s office Bernadette.lee@
The Annual Oireachtas Christmas Charity Fashion Show
We are very excited to announce that tickets for the Annual Oireachtas Christmas Charity Fashion Show, taking place on December 8th, can now be purchased online! You can find all of the details about the event on our event page below, but please do not hesitate to get in touch at email@example.com or 0868212659, if you have any queries at all. We look forward to seeing you there, on this festive night of fashion and fun, which is all in aid of RMN!
You can take a look at some of the wonderful photos from the 2013 event here:
Ballinalee, Killoe and Netownforbes Friends of Motor Neurone
Many thanks to the members of Ballinalee, Killoe and Netownforbes Friends of Motor Neurone group who have gone above and beyond to raise funds for Research Motor Neurone and the IMNDA for the fourth year in a row. The group raised the amazing sum of €19,000 through a tractor run, barn dance, raffle tickets and bucket collections. A cheque presentation ceremony was held in Rawle’s pub in Ballinalee on Friday evening, where representatives from both charities were able to gives thanks to the group and update them on the vital research and patient care that will be funded through this donation. We would like to express out sincere gratitude once again for all their hard work.
Tim Sheehy and Project MinE Ireland
Project MinE is a groundbreaking crowdfunding initiative that aims to find the genetic mutations which cause Motor Neurone Disease. In this video, Tim Sheehy, a well known businessman who was diagnosed with MND earlier this year, explains the importance of the Project MinE initiative to MND research in Ireland and worldwide. You can make a direct contribution to this important scientific research or find out more at www.projectmine.com/country/ireland/
Panasonic Donation Presentation
We would like to sincerely thank everyone at Panasonic for their wonderfully generous donation of €2,000 to Research Motor Neurone. Mel Farrell from Panasonic suggested that the company donate to MND research, after seeing his close friend John Fagan lose his battle with the disease a few months ago. We were delighted to invite Mel, and John’s wife Mary, into Trinity College Dublin to thank them in person for their generosity and support.
Castlebar ICA Presentation
We would like to take this opportunity to thank Ms Noreen Durkan, Ms Sheila Coughlin and Ms Maura McGuinness who travelled to Trinity College Dublin on Tuesday the 16th of June to present Professor Orla Hardiman with a cheque on behalf of their fellow members of the Castlebar ICA. Thank you to everyone involved in this fundraising initiative. We really appreciate your support as we journey towards a better understanding of the causes of motor neurone disease with a vision to developing better treatments and therapies.
Drink Tea for MND, 2015
We would like to thank everybody who turned up to support a very special “Drink Tea for MND” event, held in Trinity College on Tuesday 16th June, 2015. This special information event saw the joining of forces of the iMNDA and RMN and we wish to thank all those who facilitated the smooth running of the event.
Professor Orla Hardiman & her research team, provided updates on the ongoing vital research in the area of motor neurone disease. Guests had the opportunity to speak with Professor Hardiman and her team on the various research programmes currently been undertaken by TCD MND Research. Tours of the MND research facility were also facilitated.
The main research themes for discussion with Professor Hardiman and her team were:
5. Health services and mapping the patient journey
6. Drug developments and clinical trials
This was a great opportunity for the MND community to come together and join the global fight against Motor Neurone Disease. Thank you all once again for your continued support on our quest towards a better understanding of this devastating disease.
Shannon Crafts and Coffee Dock Presentation
Ice Bucket Challenge Pours Money into Trinity Research
Did you take part in the Ice Bucket Challenge? If so, you were one of the 500,000 people across Ireland to deliberately drench yourself to raise funds for Motor Neurone Disease (MND) research.
Over €1.4 million has been raised to date, and 25% of the final figure will be given to Trinity’s internationally recognised MND research group led by Professor Orla Hardiman for clinical research into causes and treatments for MND.
MND affects about 300 Irish people, with some 110 new cases reported each year. This devastating disease causes inexorable decline of the motor neurones and death within three years of first symptoms in most people.
Professor Hardiman and her research group in TBSI have made several significant discoveries in the area, including the identification of a gene for MND. Her research, which is funded by the Health Research Board, has found that particular variations in genes make certain populations more susceptible to the disease than others.
May we extend a huge message of thanks once again to Mr Neil Rawles and the extended Ballinalee community for their tireless fundraising efforts in support of the iMNDA and RMN. This is the 3rd annual event organised by the Longford community and we continue to be bowled over by their generosity and overwhelming support. A cheque presentation took place on Friday night (12th of September, 2014) with Ms Grace Lavelle (RMN) and Mr Barney Cully (iMNDA) kindly accepting the proceeds from the wonderful fundraising endeavours of all involved. Well done, we really appreciate your help and enthusiasm over the years.
MND/ALS Ice Bucket Challenge – Take 2!
Minister for Health, Leo Varadkar, the Head of Trinity’s School of Medicine, Professor Paul Browne, and the Chief Executive of the Health Research Board, Dr Graham Love all braved the MND/ALS Ice Bucket Challenge in Front Square, Trinity College yesterday.
The Trinity MND/ALS research group would like to thank all those who have donated to
the IMNDA over the last few weeks. 25% of all funds raised will be going to help fund vital research conducted by the group to try to discover the causes of this devastating disease and work towards developing new, effective treatments.
MND/ALS Ice Bucket Challenge in Trinity College Dublin 01-09-14
Well done to all involved in last Friday’s MND/ALS ice bucket challenge in Trinity College Dublin. The event proved to be a huge success and great fun was had by all. A huge message of thanks to all who came out to support the cause. Please find footage and media coverage of the event below.
Trinity College Dublin’s Leading Neurologist to take on the Ice Bucket Challenge for Motor Neurone Disease Research
Details: 1pm, Friday, August 29th, 2014, Front Square, Trinity College Dublin.
Dublin, August 27th, 2014 – Come rain, hail or shine, Trinity College’s iconic Front Square and some of its leading lights in MND research along with College staff and students will be awash with ice cold water this Friday at 1pm.
Trinity’s internationally recognised MND research group led by Professor Orla Hardiman, Professor of Academic Neurology, Trinity, and Consultant Neurologist at Beaumont Hospital together with Aisling Farrell, CEO of the Irish Motor Neurone Disease Association (IMNDA), which has been the beneficiary of the Ice Bucket Challenge for MND, will jointly meet the Ice Bucket Challenge and will be joined by Trinity staff and students in Front Square for a collective ice cold soaking.
Trinity received the Ice Bucket Challenge from Sheffield University http://www.sheffield.ac.uk/
The disease, which causes a gradual degradation and death of motor neurons, affects about 300 Irish people, with some 110 new cases reported each year. Professor Hardiman has made several significant discoveries in the area, including the identification of a gene for MND. Her research, which is funded by the Health Research Board (HRB), has found that particular variations in genes make certain populations more susceptible to the disease than others.
Professor Hardiman said, “We collaborate widely with colleagues across the world to understand the causes of this terrible disease, and to find new and effective treatments. People in Ireland have responded with incredible enthusiasm and generosity to the Ice Bucket Challenge and I am looking forward to joining their efforts and meeting the Ice Bucket Challenge this Friday. Creating awareness about the disease is extremely important – hopefully we can put more resources into tackling MND for the ultimate benefit of patients.”
For media queries contact:
Baltimore Cheque Presentation
May we extend a huge message of thanks to Rath Parish and the extended Baltimore community who received both the iMNDA and RMN with open arms on Sat 5th of July. A cheque was presented by Mr Noel Collins to Grace Lavelle (RMN) and Niamh Ni Dhrisceoil (iMNDA) (pictured below) on behalf of all those in the community who worked tirelessly to raise funds in our aid. It is communities like these that help in our quest towards a better understanding of motor neurone disease. Thank you all ever so much.
Garth Brooks Ticket Raffle
A huge thanks to Jo McKervey for organising this wonderful event in our aid.
We would like to express our sincere gratitude for the readiness to offer 2 Garth Brooks’
tickets for the raffle. We really appreciate your support and are delighted to promote this event in our aid.
If you would like to donate to this great cause please visit http://www.mycharity.ie/
For more information on ticket sales please contact us on 086-8212659.
Mini- Marathon 2014
Well done to good friends Ms Orlagh Buckley and Ms Nicola O’Neill (pictured below) who completed the mini-marathon in our aid last Monday 2nd June 2014. A fantastic achievement to all involved. Thank you once again for the tremendous support as we strive towards a better understanding of MND.
Drink Tea for MND
We are delighted to announce the running of this event for a second year running, in collaboration with the iMNDA . The event will take place on the 17th of June from 1-5pm and Professor Hardiman will address those in attendance at 2pm. We hope to see you all there on the day as we journey on our quest towards a better understanding of motor neurone disease. For more information or to book your place today please E-mail firstname.lastname@example.org or Freephone 1800 403 403.
Jason Crosbie’s Cork City Marathon
A huge thank you to Mr Jason Crosbie who is taking to the streets in support of RMN and iMNDA this coming 2nd June 2014. We wish Jason all the best in the days coming up to the race and thank him once again for his generosity and goodwill.
To show your support please visit http://www.mycharity.ie/
Pint of Science
This 2014 festival took place over 3 days (19th-21st May) across 4 Dublin pubs. A huge thank you to all who came out to attend this exhibition
and extended their support to RMN. Dr. Niamh O’Sullivan and Professor Orla Hardiman gave great insights into their ongoing work in the area of motor neurone disease research. For more information visit here:
Baltimore Tractor Run 2014
A huge thank you to Michael O ‘Mahoney and members of the Baltimore community who came out in force on the 4th of May 2014 in support of iMNDA and RMN. We hope that a good day was had by all and thank you once again for your continued support and generosity.
Hell and Back 2014
A huge thank you to Team RMN from Erin’s Isle GAA club who undertook this racing challenge in aid of Research Motor Neurone on Saturday the 25th of January 2014. The before and after shots say it all. Well done to all involved.
Tom Devlin, Eámon Byrne, Robbie
Naughton, Cara McAodháin
(R-L in before picture)
2014 Flora Women’s Mini Marathon
Get yourself in gear for this year’s 2014 Flora Mini- Marathon and help to raise funds for vital research into the causes and possible treatments for this devastating disease.
The Entry system for the 2014 Flora Women’s Mini Marathon opens on the 19th February. If you wish to run in our aid this year please do not hesitate in contacting Grace on 086- 8212659 for further information. See full details below:
When: Bank Holiday Monday, 2nd June 2014 at 2.00pm Distance:10K
Entry Process: All participants must enter either on the official Entry Form which appears in The Herald on Wednesdays and Saturdays from 19th February or online at www.florawomensminimarathon.ie
Entry Closing Date: 18th April 2014 OR when maximum number of entries is reached
Fee: €18.00 entry fee*On- line entries will incur an extra €1 Bank processing charge.
Charity Show 2013
The second annual Oireachtas Charity Show took place in the Shelbourne Hotel on November 12, 2013 and proved once again to be an enjoyable night for all in attendance. May we take this opportunity to thank everyone who contributed to this successful event, for a second year running. Vital funds raised will encourage talented researchers to participate in MND research projects and hence advance our understanding of MND. Thank you for all your kindness and continued support.
Watch all the action from Tuesday night as aired on tv3′s Xposé on Wednesday night.
Photo courtesy of Journal.ie
Oireachtas Charity Show
The second annual Oireachtas Charity Show takes place in the Shelbourne Hotel on November 12, and stylist Marietta Doran has been very persuasive in encouraging politicos “to walk”, as they say in fashion parlance.
When Deputy Nicky McFadden was diagnosed with Motor Neuron Disease in 2012, her Oireachtas friend and colleague Jimmy Deenihan asked Doran to organise a fashion show to generate funds for Motor Neuron Disease research. More than €20,000 was raised last year, and this year’s event, sponsored by Newstalk, hopes to bring in even more.
Read here for more information on those who will be strutting their stuff on the night in support of motor neurone disease research. We really hope you can be there on the night too!! Tickets are €50 each, available from 01-631 3806 or email@example.com.
The politicians will be joined by models Rosanna Davison and Roz Purcell.
Are you free this Sunday 10th November??
If so, please come out and help raise vital funds for RMN. This year’s annual walk, in memory of Michael Fitzpatrick, will be held in the Clara Lane area of Cootehill, Co. Cavan. May we extend a huge thank you to all of those involved in organising this special event. We really appreciate all of your support.
Event: 7km walk/run or cycle (shorter if preferred)
Time: Registration commences at 1.30pm in St. Michael’s Hall, Cootehill. Walk commences at 2pm sharp.
Location: Clara Lane Area, Cootehill, Co. Cavan
We hope to see you all on the day
Cortina Enthusiasts Ireland raise 1k for RMN
May we take this opportunity to extend a huge message of thanks to all members of Cortina Enthusiasts Ireland for their recent generous donation to Research Motor Neurone.
The cheque presentation took place on Sunday the 13th of October in the National Show Centre in Swords, aptly surrounded by a huge showcase of Cortinas. Thank you once again to all involved in the fundraising process. We really appreciate your support. Find more photos in our Gallery
May we extend a huge thank you to Deirdre Moynihan and wish her every success this coming Bank Holiday Monday, 28th October. We really appreciate your support in raising vital funds to help support research into this devastating disease.
For more information on Deirdre’s event please visit Deirdre Moynihan’s Event
Monster Barn Dance raises 20k!
A Monster Barn dance which took place in Rawles Pub Ballinalee Co Longford on Friday 30th August 2013, raised an amazing €20,000, with
€10,000 going to the Irish Motor Neurone Disease Association (IMNDA) and €10,000 going to Research Motor Neurone (RMN).
Cheque presentations were made on Friday 4th October in Rawles with€10,000 being presented to Marie Reavey, IMNDA Regional Development Officer and €10,000 presented to Research Motor Neurone. For more pictures visit our Gallery
May be take this opportunity to thank the those from Ballinalee and the wider community for their generosity and warmness of hearts.The need for ongoing research is paramount to discovering the cause, treatment and methods of improving quality of life for MND sufferers and their families. These vital funds will help us make progress in finding solutions for the benefit of those who suffer from this debilitating condition.
Gerry Mc Alinden’s New York City Marathon
For more information or to support Gerry’s Run please follow this link
Frank Dunne’s Cheque Presentation
A huge thank you to Mr Frank Dunne who recently presented a cheque for €5,000 to Professor Orla Hardiman and Ms Eithne Cawley (iMNDA) at Beaumont hospital. These vital funds were raised following a most successful night of music and dance in Dunboyne Castle. May we extend a huge thank you to Frank, his family and all of those who supported this wonderful event. We really appreciate your support.
Fionán Breathnach’s Triathlons
A huge congratulations to Fionán Breathnach who is about to embark on part 2 of his triathlon challenge this weekend. Please follow the link below to help Fionán raise vital funds for RMN.
Glasnevin Lawn Tennis Club Quiz
Please come along and show your support for RMN this coming Friday the 28th of June in Glasnevin Lawn Tennis Club (Ballymun road, behind
ESSO garage). All proceeds will be directed towards RMN to help us make progress in finding solutions for the benefit of those who suffer from this debilitating condition.
Tickets available on the door – €10 per person
Just come along or bring a friend – all welcome.
Email : firstname.lastname@example.org.
‘Michael’s Memoirs’ by Michael Fitzpatrick was formally launched by Charlie McCreevy, former Minister for Finance and European Commissioner,on the 27th of April 2013. This personal memoir, which he started writing with the help of his sister Brid McIntyre during the months before his death from MND, traces his life’s journey from his childhood in County Cavan to his election as a Dáil Deputy, representing the constituency of North Kildare. Michael Fitzpatrick’s life was one of service to the community, at both local and national level. His memoir is complemented by recollections and tributes from those with whom he worked, friends and colleagues. It is also about Michael’s struggle with MND with the foreword by Professor Orla Hardiman.
The book retails at €15.00 with proceeds from the sale going to Research Motor Neurone. Please support this worthy cause today by contacting ResearchMND@tcd.ie or Grace on 086-8212659 for purchase options.
Upcoming Global Awareness Day
The IMNDA and TCD MND Research invites you to “Drink Tea for MND” in Trinity!
Every year since 1997, the MND community worldwide has marked 21st June as the global day of recognition of ALS/MND – a disease that affects people in every country of the globe.
Global Day is important because it is one day that every member of the International Alliance has in common to reflect their dedication and role in the global fight against ALS/MND. This one day allows us to recognise that we are not alone in our fight against ALS/MND, and that patients, carers, former carers, scientists, health care professionals, volunteers and many, many others are all part of this fight.
Each year the IMNDA encourages its supporters to get together to mark this significant date and “Drink Tea for MND” to raise bothawareness of Motor Neurone Disease and much needed funds. In the lead up to Global Awareness and to kick off the tea drinking this June the IMNDA and TCD MND Research are hosting a very special joint “Drink Tea for MND” event at Trinity College on Wednesday 12th June.
The two organisations are very excited to be joining forces in the actual building where the Academic Unit of Neurology is based and recognised as the key Amyotrophic Lateral Sclerosis (ALS) Centre for research in Ireland. This special awareness event will run from 11am to 2pm on June 12th in the Knowledge Exchange, Trinity Biomedical Sciences Institute, Pearse Street, Trinity College, Dublin 2. It will be a great opportunity for Professor Orla Hardiman and her team to present the latest updates on the research programme currently been undertaken by TCD MND Research. It is also a chance for our MND community to come together, drink tea and join the global fight against Motor Neurone Disease.
Swing with the Rat Pack
RMN are delighted to announce this upcoming event that will raise vital funds for both iMNDA and RMN.
Fancy a night of swing, good food and entertainment? Well look no further – the Rat Pack is in town for one night only to raise vital funds for the IMNDA and MND Research. This fun filled evening that includes a three course meal and is not to be missed! Tickets are €45 and can be purchased by contacting Frank Dunne on 01-8015750 or 086-2606730
Flora Women’s Mini Marathon
A huge thank you to all the ladies who have already decided to get their running shoes on in our aid this coming June bank holiday Monday. It is not too late to sign up so please contact Grace on 086-8212659 to get you t-shirt and sponsorship cards for the event
Punchestown Race Day for MND Research, 27-04- 2013
We wish to extend a huge thank you to all who supported our recent fundraiser at the Punchestown Races on Saturday 27th April. We raised €20,000 from the event, with proceeds from ticket sales going towards MND research in Trinity College Dublin. We especially appreciate the support of Boylesports with a contribution of €6,000. The event was organised by Daragh and Maureen Fitzpatrick in association with Johnny O’Callaghan and Punchestown team, who made us all very welcome and made the day a success. As part of the fundraising event “Michael’s Memoir”, a project that the late Michael Fitzpatrick TD undertook during the final few months of his life as he was dying of motor neurone disease, was launched. Unfortunately he did not complete the memoir but with the help of friends and family the project is now complete.
The book retails at €15.00 with proceeds from the sale going to Research Motor Neurone. Please support this worthy cause today by contacting ResearchMND@tcd.ie or Grace on 086-8212659 for purchase options.