EDITOR - I wish to make some observations on the coverage of campervans, or motorhomes as they are also called. In particular, I found a recent article about Tralispean beach to be rather negative towards campers. 

As someone who was a Girl Guide, about 50 years ago, it was instilled into us to bury toilet emissions, which are a natural daily occurrence.

But I find it shocking that burying human waste is still required at most beaches because local authorities have basically ignored the public convenience situation despite the fact that people have been camping in that area for 50 years.

The council has not bothered to make facilities available for income tax and motor tax payers frequenting the beach, not day visitors or motorhome owners either.

I would like to point out that motorhomes come with toilet facilities that need to be emptied every two days on average. Usually this can be achieved by using public toilets or paying a campsite to use their facilities. However, more people are using their motorhomes throughout the year, whilst most campsites close for the winter.

In other European countries nearly every town and village has an Aire, which is basically a service point for emptying waste from toilet and grey water aka sink and shower water. The Aire also provides water top ups.

This is a paid service, usually from €3 to €10 euro depending on the particular council, but all are available 24/7,  throughout the year.

Any town in Ireland that has installed these  services has seen an increase in footfall and revenue year round. Cobh in East Cork is one good example. Some communities like The Hub at Graiguenamanagh in County Kilkenny have gone as far as to say it resurrected the town!

Motorhome ownership has increased since COVID and it will continue to do so, so instead of blaming campers, why not look instead at what councils can do to fix the situation and make some badly-needed revenue.

Some people claim that planning restrictions prevent progress. But if that is the case a wake-up call is needed.

Campervans or motorhomes have their own shower and cooking facilities, so they could tap into an existing services, like they do in CobH.

Name and address with Editor

EDITOR – News that Skyclarys will be reimbursed for people with Friedreich's Ataxia is a moment of real joy for families who have waited years, and campaigned hard, for this day.

It is worth pausing on what that wait actually looks like. It means waking up each day to discover that you can no longer do things today that you were able to do yesterday. It means watching someone you love lose ability while a treatment that could help sits just out of reach. 

It means learning to become an advocate and a campaigner, on top of being a patient or a parent, partner or carer, because the system does not move quickly enough on its own. And it means telling your family's story, publicly and repeatedly, to strangers, because that is what it took to be heard.

Nobody should have to do that to access a licensed medicine.

It is easy to think of rare diseases as someone else's story. They are not. An estimated one in seventeen people will be affected by a rare disease at some point in their life — in Ireland, that is hundreds and thousands of people, in every town and county. Yet an estimated 95 per cent of rare diseases still have no dedicated treatment at all.

That is starting to change. Scientific advances mean more treatments for rare diseases are likely to become available in the years ahead, manufactured, in some cases, at pharma sites here in Ireland. This is genuinely hopeful news for families who, until now, had nothing to hope for.

However, hope only means something if our health system is ready to meet the reimbursement challenge. Caution around pricing and strong negotiation on the taxpayer's behalf is right. However, that caution cannot come at the cost of forgetting the person waiting on the other end of the decision. 

Communities are hoping for the next innovative medicine for their condition. They deserve a system that gets there without requiring them to march on the streets and share their most difficult days with the public first.

Vicky McGrath
Chief Executive
Rare Diseases Ireland

EDITOR - Dolly Parton who died on Tuesday August 25th aged 80 was a powerhouse of a human being. I think she represented the best values of America. She was twice offered the US highest honour for a civilian, the Presidential Medal of Freedom, but turned it down each time, for many reasons, but primarily to be non-political.

In 1973 she wrote and recorded I Will Always Love You, made more famous in 1992 when Whitney Houston sang it for the hit movie The Bodyguard.

Dolly wrote many hit songs. In the 1970s she felt honoured when Elvis asked to record one of them, but not so when his manager said Elvis would do it  only if Dolly signed over 50% of the publishing rights to the song. She refused saying later it was her song and it wasn't right (It wasn't fair).

Fairness meant something to her all her life and why she founded a worldwide literacy programme for children and before that, setting up Dollywood to provide employment in Tennessee where she was born.

Thousands of tributes were paid to her by the public, celebrities, singers with years in the business who knew her. One was this extract from Reba McEntire's tribute 'Thank you, Lord, for Dolly. She's gonna have a blast in heaven singing all her favourite songs with all her family and friends who have gone on before her’.

Mary Sullivan,

Cork.