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LIFESTYLE NEWS FROM AROUND THE NETWORK
Running for European hearts…
"The human spirit is indomitable" was the conclusion reached by Sir Roger Bannister, the first runner to run a mile in under 4 minutes. Sir Roger, who died in April said “We run, not because we think it is doing us good, but because we enjoy it and cannot help ourselves... No one can say, 'You must not run faster than this, or jump higher than that.” Sir Roger retired from running shortly after his success to pursue his career as a leading neurologist.
Around Europe this spring, runners of all levels of abilities have been taking this message to heart and have tested their ability and endurance.
On a hot and sunny Saturday on 21 April, FH Europe member association, Diagnoza FH, lent its support to a fund-raising event ‘Running for the Czech Heart’, whose two main aims were to raise money for Czech surgeons and their missions in developing countries and to raise awareness of cardiovascular diseases and importance of cardiovascular prevention.
Some 900 runners came to this event and gave about 17,300 Euro to The Czech Heart National Fund. They had a unique opportunity to check their blood glucose, blood pressure, ECG and blood cholesterol. The team of physicians, nurses and nutritionists, supported by Diagnóza FH, checked the blood cholesterol levels of more than 360 people and proposed advice. Diagnóza FH plans to be a part of the second charity run in April 2019. More info: www.probehni.se or www.facebook.com/diagnozaFH.
On 22 April, the 40,000 participants in the world-famous London Marathon, included charity runners for HEART UK and the Croí Foundation in the West of Ireland.
London Marathon runners faced record April temperatures…
On Sunday 22nd April, 27 truly committed runners pounded the streets of London, showing dedication and commitment to raising funds for HEART UK as the temperature soared into the mid-20s. All 27 runners rose to the challenge and managed to complete the race. Runners’ fundraising has gone from strength to strength and HEART UK predicts total funds raised will exceed £60,000.
Such is the demand for marathon places that the public ballot for runners’ places closed on 4th May, however, HEART UK has some charity places available.
 Marathon runners are taking to the streets in Berlin, New York and Dublin in 2018 supporting Croí heart and stroke charity. Recently, Croí supporter Michelle Burke took part in the 2018 Virgin London Marathon: “I was genuinely overwhelmed by the charity runners and their support. It was a very humbling experience. I was choked up several times on route and shed a few tears. I set out to enjoy every step, no matter how hot or tough it got and that I did. WOW!”
In June over 1,000 cyclists take to the roads to support Croí in the biggest charity cycle in the West of Ireland. The Tour de Lough Corrib is now in its 23rd year and is a ‘must do’ event in the calendar of Irish cyclists. There are 3 distances to choose from 45km, 80km or 120km - a distance for all abilities and another reason to get heart healthy this summer! More information on www.croi.ie.
Saying ‘NO’ to sugar - U.K. Government introduces sugar tax
On 6 April 2018, the British government introduced a sugar tax on soft drinks to reduce consumption of fizzy drinks and tackle the rising rates of obesity and type 2 diabetes and other related diseases. Drinks containing above 5g of sugar per 100ml will be taxed at 18p per litre, and those above 8g per litre will be taxed at 24p per litre. Pure fruit juices are exempt from the sugar tax. The estimated £520million (approximately EUR 598 million) raised in tax is due to be used to fund sports in primary schools.
Spanish member organisation FHF (Fundacion Hipercolesterolemia Familiar) has also published information on the negative effect of consuming excessive amounts of sugar in the fizzy drinks.
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OTHER NEWS FROM THE NETWORK
Croí Foundation, Ireland:
Raising awareness of FH at political levels
Croí participated in the development of a National Strategic Policy Framework Report which provides a consensus on FH for the first time in Ireland. Croí is actively engaged in raising awareness of FH at a political level both in Ireland and the EU. A cross-border alliance with Heart UK has been agreed and will result in knowledge exchange and ongoing collaboration, which will be of value in terms of achieving the recommendations of the National consensus.
Cholesterol Masterclass for Healthcare Professionals
Over 100 healthcare professionals attended a masterclass on 9 March in the Croí Heart & Stroke Centre, Galway. A further master class took place in Dublin in April. Both masterclasses included two sessions on FH.
HEART UK, United Kingdom:
A one-day meeting on paediatric FH on 18 April was co-hosted by the British Heart Foundation and HEART UK at the King’s Fund health charity in London. It has been estimated that 56,000 children in the UK have FH, although approximately only 600 have been identified. Patient speakers at the event spoke of the requirements for paediatric FH to spur on further action and improve availability of services. Discussions included proposals that family clinics be implemented to create one appointment for the whole family.
Diary Date May - European Atherosclerosis Society (EAS) Conference Lisbon:
FH Europe and member associations will be represented at the EAS Conference taking place from 5-8 May in the Portuguese capital. FH Europe chair, Jules Payne, will be speaking at the FHSC meeting to be held on the afternoon of Tuesday 8th May. Three FH Europe members have been invited to speak at the paediatric FH satellite meeting to be held on Wednesday 9th May. Jules Payne of HEART UK and FH Europe, Gabriele Hanauer-Mader of FHchol, Austria and Kristyna Cillikova of Diagnóza FH, Czech Republic will speak on different national experiences and challenges for FH patients.
EU Regulations affecting our e-newsletter
The GDPR (General Data Protection Regulations) which will come into effect on 25 May 2018 aim to give individuals more control over how organisations use their data – it will also ensure that data protection law is almost identical across EU member states. FH Europe will be contacting e-Flash readers who provided us with personal email addresses to ask if they wish to continue receiving the e-Flash. We will also be posting a privacy policy on the FH Europe website in the near future.
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with best wishes to you all,
Jules Payne
Chair of FH Europe
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FH Europe is supported by an educational grant from Amgen Limited. This publication has been supported by an unrestricted educational grant from Aegerion Pharmaceuticals Limited.
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