Submitted by Carol Dobbins - chairperson NPS(UK)

This conference was everything I hoped it would be…and much more!

I have attended and organised many events like this in the past few years, but I have to say that I can’t say I have ever felt any thing like this! From the moment it all started on that Friday afternoon until the last minute I kissed many of your goodbye with tears in my eyes, it was truly a life changing event for me personally. When I arrived home, I could not quite find the words to explain just what had happened over the previous days. It was incredible!

On Thursday evening, Lisa-anne, our NPS UK manicurist, arrived at my house with all her equipment for the manicure sessions that we were planning on running at the conference. We discussed our possible plans and decided that the best thing to do is wait and see how many people may or not be interested in having this done! I think we were all in a state of shock to see so many on the day!!!! It was brilliant!!! We all headed to bed early as we knew that we would be packing the cars for some time in the morning. I drive a Renault Megane 7 seater Grand Scenic and there was no room for another pencil!!! My husband, Keith’s, car was bursting at the seams so bad that we had no option but to borrow his dad’s car for the extra space!!!

We left at 8.15 and headed over into Glasgow to pick up our child carers Sheila and Marion. They were ready and waiting and we transferred all the stuff from Keith’s car into Jim’s car, then headed for the motorway. Our journey was fine and we arrived at the venue at just after 1pm. As I stood downstairs at the check in, a lady approached me with a huge hug and spoke to me, excitedly in French!!! It was Christine Dodin who had just flew in from France the day before to get to the conference. She was lucky to get the weekend off her work so grabbed the chance to be there, and I am pretty sure, by the experiences we all had and the smiles on her face throughout, she had no regrets!

Upstairs, while setting out the registration desk, some people began to arrive. It was such a treat to finally get the chance to meet up with Kath, Alice and Rosie Lovatt, followed by Wim van Schaik, our webmaster, and the Shirley Raynor and her two children Rosie and Ben. All wanted to help and they were all quickly put onto many jobs. The children’s room needed to be set up and the Meet and Greet room needed to be set up too. We set up our raffle tables in the meet and greet room and had so many prizes, it was impossible to hand them all out on that night. We decided to do 3 separate raffles. One at the meet and greet, one at the end of the talks on the Saturday and the final draw would be done at the disco/karaoke night, where we found some evil twins lurking!!! More on that later!!!

It was decided to make some beautiful hampers and over the past few months, we had been collecting bits and pieces to fill them with. Kath had gathered a whole load of stuff and got the baskets from a very kind family friend. Our little team got to work and I was absolutely stunned at how amazing they looked! We had one filled with beer, one with groceries, one with children’s items and more! Fantastic and looked stunning on the table! We set up our gift shop with our pens, pencils, t-shirts, mugs and teddies. We set up Lisa-anne’s little table at the meet and greet where she decided to start some manicure sessions to cut down on the numbers on the Saturday, just as well we done this!!! She was busy and I know that she loved every minute of it!! What an angel!! Our Meet and Greet was a huge success and many people arrived, many for the first time, astonished at how others were able to show off their elbows, knees etc…Before long, they were doing the same. Many friendships were made on that night and it was so touching to see the children bond also as they raced around asking me what they could do to help. As usual, Stephen and Rosie were selling raffle tickets to everyone they could find, including people who were guests at the Hotel!!! One man won 2 raffle prizes and we invited him in to the room to choose what he wanted! He was so happy to take a beautiful hand bag and a jewellery set for his wife sitting outside!! He was so enamoured by it all, he ordered me to send Rosie and Stephen to him the following night to buy more raffle tickets!!!

The day of the Conference began well. No hiccups, all the technical bits in piece. Wim set up the camera to record parts of the conference and people took their seats. Everything was in place and we began at 9.15. Elizabeth followed, looking absolutely beautiful as she bloomed in her 30th week of pregnancy!!! I wish I had looked like that when I was at that stage!!! Elizabeth was wonderful as usual and our delegates listened in silence. A break followed, when I was told that Everyclick had arrived. They were there to spread awareness of the incredible work they do with charities such as ours. We had a huge blue mouse wandering around and spending some time with the children and I wasn’t sure whether to offer them some teas and coffees like the rest of us, or some cheese!!! Everyclick have increased our funds by a whopping £1900 and more! Please, please continue to use this as it costs you nothing and our charity benefits in such a great way. Get all your friends and family in your address book to do the same. Since we have returned from the conference, I have noticed already that we have 3 more supporters…that is wonderful, but we really need more. To earn that amount of money would be a few fundraisers for me, but it takes the pressure off a little as this is a continuous payment and I am not doing a thing.

After our break, Christine talked to us all about the ADHD research and many people learned a lot as Christine told many people information that th4ey were not aware of. It was very interesting and a pleasure to listen to her again! Adele took to the floor next and I have to say that I was very touched by her words as her Power point was being set up. Adele paid a beautiful compliment to Lisa anne who sat in the corner of the room throughout the conference working on making many of our ladies’ nails beautiful. I am sure that you will all agree, she was just brilliant. There were many tears of joy and looks of amazement on the faces of so many as they looked down at their hands to see nails that looked strong and healthy for the first time in their lives. Lisa has already got on the phone to start the ball rolling for the next conference and we are working with a nail company to see if they are willing to try and find something that can be done for those with very little or no nail. We will keep you posted on this.

Adele spoke and we received many positive comments on what she had to say. As usual, Adele provided such useful ways of dealing with NPS and many left with information on how to stay as healthy as possible. Adele also visited our shops to see what was available in the UK for those who need to add more vitamin D to their diet. She purchased these and donated them to our raffle! What a kind gesture. Thank you Adele!

Next to arrive was Anna Allford from GIG. She was there to present a little workshop for the Family Route Maps but was slightly alarmed at the numbers of people there! It was such a great opportunity for us all to put down on paper many of our ideas of what works and what does not. Anna was so informative and the session was a huge success. Many people contributed to this and we were astonished at all the points noted by those who attended. Anna is working on putting this al together and I hope to write about this in our next in a few weeks time! Thank you to Anna for doing this for us and also for you all for working with us on this. I have no doubt that it will be such a great source of information when the project is completed.

Lunch followed and I was happy to sit with the children for a little while and let our carers get a little time to themselves and have some adult talk!!! I have to say that Lynn Douglas also played a huge part in caring for the children on this day. She was so enthusiastic about this and I feel that she was perfect for this slot. The kids loved her and I am sure by the look on her face she enjoyed their company too. The children enjoyed making little pictures, cards, calendars, swam in the pool, played playstation, watched DVD’s etc…. they had a ball and our carers were wonderful in ensuring they were all safe and happy throughout the conference talks. Our food, once again, was just beautiful and the new décor in the Silks restaurant was gorgeous! I was told that the wallpaper was silk!!!

Following lunch, Kevin Lemley told us all about our kidneys and how NPS affects us. I had a particular interest in this so I was happy to try and listen to as much as possible. He was very informative and I was aware that many people were sitting taking notes throughout this talk. It was wonderful having Kevin at our conference as it is the first time we have had that honour and I hope that he will be happy to come back again in 2009! Following on from Kevin, was Mark Neugebauer. What a kind gentleman! He provided me immediately with some very interesting and useful literature on open angle glaucoma and told us how he and his team have been spreading awareness of NPS in other parts of the world. A young member of his team, Vignesh, presented a talk on NPS at a convention and won first prize!! His enthusiasm is wonderful to see as he continues to support us on what he knows is very dear to us. Thank you Mark!

We had a little break and then Steven Zaretsky talked to us about the NPS knee. He provided us with some very useful information and showed us some video clips too. It was all very interesting and once again, I was aware that everyone was listening intently, writing notes and gathering all the information they could get. It was a very important part to our conference and I am so very grateful to have the Zaretsky’s with us for many reasons. They are the most wonderful warm family and I was absolutely overwhelmed to hear that Corey donated his £50.00 prize money back into our funds. What a very generous thing to do! Thank you Corey. Iain was last up and educated us on the LMX1b and all that we needed to know about the genetics. Each time I hear this one, I feel that I understand it more! As usual Iain was brilliant and filled our minds with an array of facts that are essential in our understanding of why we have NPS.

We moved the chairs onto the stage and then began our Q & A  session. Many people wrote down their questions for me to read out to the speakers on stage. It was an interesting session and many people used this opportunity to ask those questions that they were still a little unsure of. It was a huge success and I hope that everyone feels that they benefited from this.

Shirley then stood up, following my final words on what the charity hopes to continue to provide for the future. She talked to everyone about the financial side of the charity and thanked them all for their support, adding that we need to continue with this work for our charity to survive. We get no government funding and rely on donations totally, so we need all the help we can get. Following this, we had our pr4esentation to the speakers and we asked the children to help with this. It is always a huge pleasure to do this and I feel they are so wonderful to help and support us in the way that they do. I was a little taken aback to be presented with a beautiful gift myself from young Rosie Lovatt! I have no idea who was responsible for that, but thank you so very much from the bottom of my heart!

We used this opportunity also to get a lovely photo taken. There were many of us in the room at the time, so we lay the chairs out and got ready. Many of the children got into this one too! It was really nice to see so many people together like this and hopefully many people got some nice pictures for their memory books!

It was time to say goodbye to some people and by this time, I felt my emotions were running high. It is always very difficult to say goodbye at the end of these days and events as over the period, we share some very private moments and I can only hope and pray that we all stay in touch with one another. It was finally time to grab a change of clothes and a 5 minute break before our after dinner meal for our speakers. This is always a nice time to chill with our team and enjoy a lovely meal. Following our meal, we added our little Disco/karaoke night! It was a great time to totally unwind and show each other that we are so much more than just NPS! I have to say that those who came, will no doubt agree with me, had a fantastic time It was fabulous watching everyone get up and dance and sing and basically have such a brilliant time, showing off our NPS arms, knees, hairline, feet etc…. Kath and I were in our element dancing away without a care in the world about the bent arms and painful knees! It was a night to cherish and I will never forget it for the rest of my life! If I could bottle the laughs we had on that night, I would be smiling forever! Overall, what a night! Thank you all for making it so special!

At this conference, we were very lucky to have an extremely kind donation of a holiday in Northumberland in one of the Parks resorts.We organised a separate raffle for this and raised a great deal of money. On the Saturday night, I drew the raffle winner and it was our very own Christine Slavin who was the lucky winner! Our donor was extremely kind in adding that she would make this a 2 week holiday as Christine obviously has a way to travel!

On the Sunday morning we decided that we should host some group sessions. It was all a little difficult to predict and we were quite unsure about how many people would attend. Our hosts were myself, Kath Lovatt, Lynn Douglas and Claire Sugden. We discussed which sessions we should hold and always had support from another person. We hosted groups of NPS under 16, NPS 16 and over, Non NPS under 16 and Non NPS 16 and over. I don’t even know what to say other than the first session I hosted with the young NPS group was the most incredibly powerful memory. I had no idea where all this would go, but all I can say is that those young people are so incredible and I left that room filled with so much hope for their future. There were courageous words of such wisdom said in that room. I am so proud to know them all and I hope that we will stay in touch forever! The other groups were equally poignant and I know that many people were moved and grateful at being given the chance to speak their minds freely and confidentially for the first time. When the sessions were over, it was time to say goodbye and I have to say that Christine Dodin summed it all up very well. Christine came to our conference, knowing that she could not communicate in English very well, but she looked into my eyes as we said goodbye and said that “No words were needed.”

To me that sums up the weekend! Yes, we need to learn and yes we need to use words to communicate, but for others it was even more than that! It was connecting with others, sharing with others and hopefully forming another link in our NPS chain. I always say that our NPS is growing and every link makes us stronger. This conference gave us all so much strength as the chain increased dramatically with new faces and ideas. I am so grateful to you all for your input and I will wait patiently for the day we all get together again. And welcome some new families.

Roll on 2009!!!