IBTA e-news
This month’s e-news from the International Brain Tumour Alliance is out now.
You can read it in full here:
Brain Tumour Ireland News
We Need Our Heads Examined
There is an urgent need for investment in neuro-rehabilitation services in Ireland.
We are co-signatories to a letter on this topic published in today’s Irish Times by the Neurological Alliance of Ireland (NAI).
The full text of the letter is here:
Neuro-rehabilitation – a ‘silent crisis’
Sir, – As the representatives of national charities representing people with neurological conditions, we are writing to express our extreme concern at the lack of action on tackling the “silent crisis” in neuro-rehabilitation in this country.
What we are calling for is a commitment from this Government to multiannual investment across hospital and community to deliver the neuro-rehabilitation services that are taken for granted across the rest of Europe.
Ireland is a European blackspot when it comes to neuro-rehabilitation services at every stage of the pathway from hospital to home.
Many are losing a vital window of recovery as they wait months for a neuro-rehab bed or appropriate services in the community.
The National Neuro-rehabilitation Strategy was published in 2011 with an implementation plan expected within six months.
We are still waiting for that plan over six years later.
Minister for Health Simon Harris committed to publishing the plan by June this year in line with the commitment in the programme for government. We now understand that deadline will not be met and no timeline has been given for when the plan will be delivered.
It is one year since we launched our “We Need Our Heads Examined” campaign for action on neuro-rehabilitation.
Since then, we have had more empty promises, following on from more than a decade of failure by successive ministers to address this health crisis, which is leaving thousands of Irish people each year experiencing the unnecessary burden of disability, unable to leave hospital or living in inappropriate settings and with families struggling to cope. – Yours, etc,
MAGDALEN ROGERS,
Executive Director,
Neurological Alliance
of Ireland;
KIERAN LOUGHRAN,
Chief Executive,
Headway;
THOMAS LILLIS,
Chairwoman,
Huntingtons Disease
Association of Ireland;
PAULA GILMORE,
Chief Executive,
Parkinsons Association
of Ireland;
BARBARA O’CONNELL,
Chief Executive,
Acquired Brain
Injury Ireland;
CHRIS MACEY,
Head of Advocacy,
Irish Heart Foundation;
RICHARD LODGE,
Chief Executive,
Muscular Dystrophy Ireland;
REINHARD SCHALER,
Chief Executive,
An Saol;
TINA LEONARD,
Head of Advocacy
and Public Affairs,
Alzheimer Society
of Ireland;
AVA BATTLES,
Chief Executive,
Multiple Sclerosis
Society of Ireland;
KATHLEEN O’MEARA,
Director
of Communications, Public Affairs and Fundraising
Rehab Group;
NATASHA SMITH,
Chairwoman,
Brain Tumour Ireland;
JAMES McCARTHY,
Chairman,
Spinal Injuries
https://www.irishtimes.com/opinion/letters/neuro-rehabilitation-a-silent-crisis-1.3139482
Would you like to help with brain tumour research?
Would you like to assist with brain tumour research?
If your loved one has been diagnosed with a brain tumour please contact PhD student Anna Trejnowska from Queen Margaret University to take part in her research.
For more information please see here:
Ireland’s first Brain Tumour Biobank, supported by Brain Tumour Ireland, will lead to increased cancer research opportunities
Researchers from RCSI (Royal College of Surgeons in Ireland), with support from the Department of Neurosurgery and Neuropathology in Beaumont Hospital, have begun collecting samples from brain tumours for inclusion in Ireland’s first Brain Tumour Biobank.
The Biobank is part funded by Brain Tumour Ireland.
Professor Jochen Prehn, Professor of Physiology at RCSI, said “The launch of this Brain Tumour Biobank is a fantastic development for cancer research in Ireland. It is the first biobank of its type in Ireland and one of only a small handful that exist in Europe.”
“In recent years much progress has been made in the treatment and diagnoses of brain tumours however future advances are likely to be made through a greater understanding of the underlying biology.”
“To conduct studies and research into brain tumours it is vital to have access to a wide range of samples from various different types of brain tumours and a brain tumour biobank gives us the opportunity to do that for the benefit of patients,” Prof Prehn continued.
A biobank is a large collection of biological, medical data and tissue samples, collected for research and diagnostic purposes. A patient who is having brain surgery as part of their clinical treatment will have the tumour removed, examined and diagnosed. After this the excess brain tumour tissue will be stored in the biobank.
The brain tumour biobank will become a repository for brain tumour samples which will enable researchers use samples for future clinical studies, to identify and diagnose tumours in other patients and help develop cancer treatments. All samples included in the biobank are anonymised and patients consent is sought in advance of treatment.
“The structure of biobanks fosters cross-collaboration between disease advocacy organisations and research scientists. They produce a synergy that hastens the research process, making treatments or cures to genetic conditions attainable in the near future. Other biobanks in Ireland for other forms of cancer, such as the breast and bowel cancer have proved to be invaluable to research and developing new cancer treatments,” concluded Professor Prehn.
The Brain Tumour Biobank is part funded by Brain Tumour Ireland.
Natasha Smith, Chair of Brain Tumour Ireland, said “Aside from providing support and information to brain tumour patients, one of our chief goals as a charity is to fund brain tumour research. That’s why we are delighted to provide funding for this new Brain Tumour Biobank.
We know that progressing brain tumour research is really important to many of our donors and supporters.”
“This Biobank is a really important development in brain tumour research here in Ireland and for the future development of novel therapeutics. Brain Tumour Ireland is delighted to support this fantastic initiative and we look forward to continued partnership with RCSI and Beaumont Hospital.”
RCSI is ranked in the top 250 institutions worldwide in the Times Higher Education World University Rankings (2016-2017). It is an international not-for-profit health sciences institution, with its headquarters in Dublin, focused on education and research to drive improvements in human health worldwide.
Brain Tumour Ireland is a national registered charity working to inform and support brain tumour patients and their families. Brain Tumour Ireland also fundraises for brain tumour research.
Twitter Wear a Hat Day for brain tumours
As part of its yearlong partnership with Brain Tumour Ireland, Twitter Dublin is running a fundraising initiative entitled “Wear a Hat Day” on Friday, 12th of May.
Twitter employees are encouraged to wear a hat to the office on Friday 12th May and promote the initiative with selfies and videos on Twitter using the #WearAHatDay hashtag.
At the end of the day, a fun prize will be given to the Twitter employee with the best hat.
People can donate through the special fundraising page: https://give.everydayhero.com/ie/wear-a-hat-day-2017 or donate €4 by texting BTI to 50300 . 100% of your donation goes to Brain Tumour Ireland across most network operators. Some operators apply VAT which means a minimum of €3.25 will go to Brain Tumour Ireland. Service Provider LIKECHARITY. Helpline: 0766805278
By promoting the initiative through Twitter, it’s hoped that the general public will get involved and that they’ll give generously as well.
Lina Stein, Mayo based, Milliner /Tutor and also recent brain tumour survivor, has kindly donated one of her beautiful hats as a prize for the creator of the best hat in the Twitter Dublin office on Friday.
Check out Lina’s website here: http://www.linasteinmillinery.com/
The Twitter / Brain Tumour Ireland partnership came about through James Murphy, a young man from Cork who was diagnosed with a brain tumour last year. After undergoing treatment James is now back at work at his job in procurement for Twitter Dublin.
James received huge support from his employer and colleagues at Twitter Dublin throughout this time and, as part of this, they decided to nominate Brain Tumour Ireland as their charity of the year for 2017.
Speaking in advance of the Twitter Wear a Hat Day, Chair of Brain Tumour Ireland Natasha Smith said, “We are extremely grateful to James Murphy and everyone at Twitter Dublin for choosing us as their charity of the year.
“We first met James last November at our annual fundraising run in Dublin. Despite recovering from a brain tumour and recent treatment at the time, James and his great group of friends ran 10km in aid of Brain Tumour Ireland!
“James is a really inspirational guy and proof that you can live a good life after a brain tumour diagnosis. We are delighted he is back at work now in Twitter and doing well.
“We hope Twitter’s Wear a Hat Day will help to raise awareness of brain tumours in Ireland and we encourage others to get involved and wear a hat for brain tumours on the 12th May.”
Funds raised will be used to support brain tumour patients in Ireland and to help fund brain tumour research.
Natasha explained “Through our partnership with the Royal College of Surgeons in Ireland, we are helping to fund a badly needed brain tumour biobank for researchers to store and analyse sample tissue.
“Brain Tumour Ireland is also holding a Wellness Day in Cork on Saturday 20th May. This is one of a series of such events we have held to support brain tumour patients and their families.”
Wellness Day – Cork
Brain Tumour Ireland is holding a Wellness Day on Saturday, 20th May, in the Ennismore Retreat Centre, Cork.
This free event is open to brain tumour patients as well as family members and carers. In addition to benefiting from the scheduled sessions, previous participants have reported the positives of meeting with other brain tumour patients and sharing experiences and advice.
The event will start at 10am and will finish at approximately 3pm.
Lunch will be provided.
You can register your free place by emailing sandra@braintumourireland.com
(Places are limited).
Details
We have some wonderful sessions planned for the day:
(1) Mindfulness,
(2) The Herb and Vegetable Garden – Growing for nutritional cooking,
(3) Music Therapy.
The full outline of the day is available here.
Facilitators:
Mindfulness
Nicola Morey – B.Comm, MBS (HR), Qualified Mindfulness Teacher (MBSR).
Growing for nutritional cooking
Michael Kelly – writer, and founder of GIY and GROW HQ, Ashoka Fellow, Member TASTE Council of Ireland & Irish Food Writers Guild.
https://giy.ie/archive/giy-profile-of-michael-kelly.html
Music Therapy
Jess O’Donoghue – MA Music Therapy UL, BSc Speech & Lang Therapy NUIG.
Join team Brain Tumour Ireland for the Women’s Mini Marathon!
Join the Brain Tumour Ireland team for the 2017 VHI Women’s Mini Marathon and help fund brain tumour research and support brain tumour patients here in Ireland.
The entry period has been extended to Friday 12th May.
You can enter directly with the event organisers here: http://bit.ly/2qWKGqu
Contact sandra@braintumourireland.com to join the Brain Tumour Ireland team for the day! We will give you the meet up details as well as your free t-shirt. (This can be sent to you in advance if you are not free to meet on race day.)
Check out the helpful training plans and nutrition advice here on the Mini Marathon page: https://www.vhiwomensminimarathon.ie/vhi-womens-mini-marathon-training.19.html
Brain Tumour Ireland chosen as Twitter Dublin’s charity partner
We are very excited to announce that @TwitterDublin have chosen us as their charity partner for this year!
The good people at Twitter Dublin are going to be working with us, both to raise funds and to raise awareness of brain tumours here in Ireland.
Twitter Dublin’s James Murphy with Brain Tumour Ireland volunteers, Jimmy and Cliona
Pictured here with Brain Tumour Ireland volunteers, Jimmy and Cliona, is James Murphy who works in procurement at Twitter Dublin.
James was diagnosed with a brain tumour last year and received huge support from his Twitter colleagues. James is now thankfully back at work and doing well.
We are delighted that James’ colleagues voted for Brain Tumour Ireland as their charity partner this year, and we very much look forward to working with them.
You can check out James’ Sense of Tumour blog here.
Brain Tumour Ireland meets with nurses in Beaumont Hospital’s Centre of Education
Today we spent time with the people from Beaumont Hospital’s Centre of Education, talking to nurses who are taking a neuro-oncology course.
Meeting with nurses in Beaumont’s Centre of Education.
We spoke with them about brain tumours and the specific needs of brain tumour patients and their families.
Natasha Smith (Chair of Brain Tumour Ireland) explained why the charity was formed. She outlined both the work that has been done to date, and our plans for the future.
James Murphy, a brain tumour patient and great supporter of our charity, spoke about his hospital experiences, both negative and positive. He detailed his patient experience from the time of his diagnosis right through to his surgery and treatment.
We are very grateful to Beaumont’s Centre of Education for the opportunity to advocate on behalf of the brain tumour community with this great group of nurses who are seeking to achieve the highest standards in the care they give to brain tumour patients.
Brain Tumour Ireland 10K & 5K Run Fundraiser
The annual Brain Tumour Ireland run / walk event to fundraise for our work in supporting brain tumour patients and their families, takes place on Sunday, 6th November in Corkagh Park Dublin.
This event forms part of “Walk Around the World for Brain Tumours”, a project co-coordinated by the International Brain Tumour Alliance (IBTA). We will donate the mileage covered in Corkagh Park to the IBTA’s “World Walk” target of circling the earth to raise awareness of brain tumours globally.
To help contribute to the mileage and donate to the work of Brain Tumour Ireland, come join us in Corkagh Park! See further information below:
When: Sunday, 6th November 2016
Where: Corkagh Park, Clondalkin, Dublin 22
Start time: 11:00am
Meet: Car Park at St. John’s Grove entrance off Fonthill Road South (main entrance to Corkagh Park). Accessible by bus 68 or 69 from Aston Quay to Clondalkin.
Sign in & t-shirt pick up: 9.30 – 10.15am
Registration is available here or you can register on the day at Corkagh Park between 9.30 – 10.15am
- 10k timed run €20 (Free technical race t-shirt with timing chip)
- 5k timed run €15 (Free technical race t-shirt with timing chip)
- 5k untimed run & walk €10 (Free t-shirt)
Facilities:
- Bag/key drop off point
- Toilets
- Parking
The Ronnie Fehily Foundation CHY20506. Founded in 2012 by a small group of people caring for a family member who was sadly lost to a Brain Tumour.
