Congress | Congress comments | Neils presentation | Congress comments
“…….the event was organised to a very high professional standard, starting with the meal on Friday night, which gave the opportunity to meet fellow alphas and carers and make new friends and learn from their experiences.
The Saturday event was extremely interesting and informative and a fellow alpha said to me that he had learnt more that morning than he had learnt in the last ten years about the condition!! The congress presentations and speakers provided the opportunity to discover more about the condition and future progress. The personal stories from yourself and fellow alphas endorsed your commitment and the emotional impact it has on carers as well as sufferers and the frustration of how little is still known of a1.
In considering the younger members present. The arrangements made with a trip to the zoo and all the younger children receiving a gift, I thought was exceptional and certainly expressed a warm welcome.
Thank you again for an interesting, knowledgeable and enjoyable weekend and the opportunity to meet and make new friends…..”
“…….a very pleasant weekend. We found the lectures very interesting and informative. I have not been fit for much since we arrived home on Sunday evening but it was worth it meeting other people in the same situation. John says it has helped him as well, as it has made him more aware of how I feel and will be more patient with me when he wants to go out and I am having a really off day!!..... Thank You once again, ”
“……what a lovely weekend and I am so glad we went as we made friends with some lovely Alphas…..”
“We really valued coming to the Congress last weekend. Whilst it was in parts very upsetting, it gave us lots of very valuable information and as always in these situations, it is always good to realise that you are not alone and that there are many others in the same situation, with the same thoughts & feelings. The talks that both you(Lin ) and Neil gave were very powerful and gave a fantastic insight into the views of both the patient and the carer. The other speakers were also excellent…..”
“…….a massive thank you for the congress. While it was an emotional rollercoaster for us we gained so much by going. All the wonderful people we met and talked to who showed us that we are not alone. While this forum is fantastic and has helped us so much already there is nothing quite like meeting face to face and talking. We spoke to some lovely people some parents like us with Alpha children and some adults who are Alphas and everyone was so supportive.
The weekend was funny in places and very emotional in others. We felt at times like we were reliving the time we first found out about our little one. But it was also very cathartic as well. The information about Alpha has also helped our understanding about the condition and also scared us at times but then its best to know the worst case! Well that’s how we feel! To find out that there might one day be a cure for this is the most hopeful news ever and we are so grateful to have had this chance!
What can I say about the whole event? It was wonderful!......”
“…..we would not have missed it, we learnt so much and what lovely friendly people all the Alphas were, they are so positive and cheerful….”
A personal note… I would like to thank the Alpha Europe Federation for organising and funding the Congress, giving Alpha 1 Awareness UK the privilege of hosting the whole event and giving UK Alphas an opportunity to hear speak some of the very best clinicians in the field of Alpha 1….Lin Daniels
The final comment is from our Chairman, Alan “….my view is that the congresses also help physicians and researchers by allowing them to meet and talk to the patients who are the very source of all the medical challenges that they have chosen to study.”
|