Back to the FFL UK 2012 conference report 2012 Friends for Life UK Report - Comments

It is the best feeling in the world being with people who REALLY get it... and to know that they are there for you 24/7, 365 days a year is magical.

By far the best for me was seeing my son happy and carefree. The photograph you took with his 3 friends he made there, says it all for me. I have never ever seen such a smile on his face. You and your fabulous team have done this for him. As for me, you have helped me a great deal. I feel more relaxed and now rejuvenated to keep on the good fight!

My lasting memory that I will take away from FFL UK is the image of my son running around the hotel with his friends, bag on his shoulder (something he agreed to do after last year’s trip) happy and not feeling different. For him, this is very important. He once said to me 'having diabetes makes me different enough; I don't want to be any more different.' This makes me sad. I hope as he grows he will realise it’s not bad to be different, but for a time last week end he wasn't.

I found FFL amazing, emotional and inspiring.

You and your team are to be congratulated for an excellent programme and for the real support that you were able to give to the parents and the children alike.
Sir Michael Hirst

We were left in awe of you amazing people who have grown this special organisation from the love, hope and desires for your children and others. You are an inspiration to us all and remind us that it is not just our T1 kids (and their siblings) who are truly amazing but their parents are pretty cool too!

I was amazed at how great everyone was in child care, and they deserve a massive thanks for doing such a great job. Thanks to everyone involved, it was another memorable experience at FFL this year.

FFL leaves you completely re-energised, but in the most exhausting way imaginable! I couldn't have put an e-mail together that did it justice if I tried to straight away. I needed to rest my brain. Thank you from the bottom of our hearts for all that you and the staff do in putting together the FFL conferences. I cannot begin to imagine how much goes into it, but the result is just amazing. The magic of FFL never lessens in any way. It actually grows year on year.

It was nice to meet like minded people who strive for the best for their children and not accept the status quo so thank you for all your work.

I loved seeing how much fun the kids all had together and how care free they looked. Knowing that wherever they went they were completely safe. And I've loved looking through the pics since getting home. You just can't help but smile seeing the happiness that radiates from them.

The family disco was great and it has been a joy to see my son so free this weekend without any of his usual stress related symptoms! Far too busy playing with his friends. He loved the sports sessions and carb creatures. Jeff’s closing keynote was very touching and informative, with evidence to support everything - and before I knew it, it had all ended too suddenly, the time had gone so fast. Many, many, of you to thank for all that goes into organising it, sponsoring it, running it and speaking and empowering us. Special thanks to Teen and Tween staff, my boys had a great time and this is the only place I do not have to even think about my son/diabetes while he is with you guys.

For Joe and I, it was our second FFL but for my mum it was her first. I'm so glad she came, I know she found the weekend very informative as well as emotional but most of all she got to meet all the people she hears so much about. She also fell in love with Joe Solo-who doesn't?! Thank you from the bottom of my heart to every single person who makes FFL possible. I can't imagine life without it.

FFL is the only time my daughter feels “normal.”

My husband was sorry to miss it, but my Mum came in his place and she said she was overwhelmed by the kindness and warmth shown to her by the staff and our fellow FFLers. The weekend allows the children/teens to be "normal" and just have fun. My daughter is at her happiest when she is at a CWD FFL Conference with all her friends, and it was so lovely to see all the teens & young children mixing at the family disco - it was just one big happy family party.

This Tuesday, my daughter had prepared a presentation for school. She had been asked to talk about a hobby, important event, holiday etc. Her opening line was "I would like to tell you about a very special week-end called Friends for Life UK.” Her choice of subject was completely her own and she made a power point presentation complete with a picture of Jeff explaining how it all began. I was so proud of her. By the way my daughter got an A+ for her presentation and I think that just about sums up FFL UK.

We are always really impressed by the commitment and involvement of all the sponsors. Please pass on our thanks - having something to take away to treasure from such an important weekend makes it all the more special for our kids.

Thank you to Mike for the food and especially the gluten free menu, which makes life so easy for me and my youngest. It is the only place we go that he gets a choice of GF food at every meal!

I don't know what goes on in the teen sessions but stuff that I have been saying til blue in the face, suddenly makes perfect sense to my son, when uttered from the lips of Jim, Natalie, Jeff and company. This year’s big (for us) breakthrough is giving his baby fingers a break and testing on others.

My daughter was very interested in seeing the technology the other children had i.e. seeing the other pumps and sensors and how the others dealt with them.

My child is different at FFL: more confident, more carefree, more positive, and doesn't feel different. I know these weekends will change her life in the long run, and the lives of all our children. I think all the positivity and caring soaks into their skin over those weekends as does the desire to have the best blood control they can, as they see everyone else doing what they have to do, without parents telling them.

After listening to Jeff's talk about taking insulin 20 minutes before meal, I decided to do that- already seen a huge difference (fingers crossed it stays this way). I can't thank you and all the other CWD staff enough for just being amazing.

Child care was excellent, the children couldn't get enough of it! Constant comments, " When is it time to go back?" And on picking up Calum aged 2, "I not coming Mummy, I stay here!"

Was very impressed when I dropped off my son on Sun morning, slightly hypo and waiting for his BG to rise. Felt very confident to leave him. Was impressed when I think was it Ken was mid-set change before the session, but still introduced himself and said how they would watch out for him. Slightly surreal to be somewhere someone banging a set in their stomach was quite normal but great all the same! FFL definitely has given my son more confidence; when he was there he was making more decisions for himself about his diabetes care so obviously it is empowering to him.

Many thanks, for yet another FFL which brought out indescribable emotions for all of us. My mother, a grandmother of a CWD attended for the first time and the experience has also touched her. I laughed many times, and cried a few. I often said nothing, but was on the receiving end of so much companionship. We feel reenergized, empowered, and part of a community that most people can only hope for...

For me, Jeff just seals the weekend. I now realise I could never miss his picture show, his summary, his thoughts and experiences and knowledge! That man has so much knowledge!! I would love to see more Brit kids' faces on the screen please pretty please. There are a few familiar ones but we need more, more! I was so glad Jeff shares his stories with us, and to see his struggle like my struggle and others only pushes me more to know why FFL is just that: friends for life.

Joe Solo's grandparents talk was a great help. When are you going to clone him so everyone can have a Joe Solo? I live in Devon many hours away from my family and it's a great comfort to me to know that my daughter has such a very wonderful support network in CWD.

It is such a total joy to be amongst people who understand the life we lead. I cannot ever ever thank you Laura and you Jeff for bringing FFL to the UK. I found it at a time when I was desperate to help my daughter but knew not where to turn. Somehow I found the very first FFL UK conference. It was clearly meant to be. Four years on, and I have my cheerful, carefree, naughty, confident, cheeky daughter back with me... Pumping and with a single figure HbA1!

My son, as always, loved the teens. FFL not only helped my daughter to gain independence & friendship, it also helped my son to make relationships with siblings who "know how it feels."

My favourite point was going into the disco and seeing Sophie with toffee sauce dripping off her fingers as she dug out a chunk of apple from the bowl of sauce and manoeuvred it towards her mouth. She looked at me over the gooey mess and said "I have down arrows". Duh.

Jo in Elementary said the loveliest words when I went to drop Daniel off on the Saturday morning. I had the usual bag of medical stuff and Jo with all her warmth and friendliness said 'we only need Daniel.' I nearly the past year since diagnosis nobody has said to me 'we only need Daniel'... For those two days at FFL, I felt he was back to just being a little boy again...not the little boy with a bagful of medical stuff and a long explanation of what might be required. Those words meant the world to me.

The talks and groups included just the right amount of personal, emotional, info, technology, politics and science. Learned more, feel invigorated (and knackered!) but above all realised that actually, my husband and I do a pretty good job at this whole thing (as do we all) and that I need to stop being hard on myself.

What a fabulous roller coaster of a weekend filled with laughter, tears, sharing, support and invaluable education and information. Thank you so much to the wonderful CWD team (and the fantastic sponsors) who make this happen. You change all of our lives and show us and our children a better way.

Many thanks to everybody who makes this happen, it has become such an important part of our lives.

Marissa was diagnosed at the same age as my daughter, and that picture of her getting an award for doing her first injection was so poignant to me. On the journey home, I told her Marissa was diagnosed at the same age as her, and that she's grown up, gone to college, got married, etc. I could see my daughter’s brain chewing this over and understanding that all those adult diabetics at FFL were just like her once.

Thank you, thank you and once again thank you. Loved this FFL, it really is firmly established in my life as something that is needed to be done yearly. Thank you to all those who were part of FFL and especially to those who made it after hurricane Sandy hit NY. Joe Solo, I could have cried when I saw you walk through the hotel doors as you arrived. wow. That is dedication.

Our 13 year old had her first experience of the teens group this year and said it was the best conference so far. She really enjoyed the talks on how to take care of your diabetes and got a lot of interesting information. She is now trying to set up a JDRF fund raising day at her school, along with some of her friends.

Just wanted to say a massive thank you to you, Jeff and the whole team for a truly amazing weekend. It was our second FFL and every bit as amazing as last year. My tears nearly started as soon as we walked into the main area from reception as we arrived on Friday night and my daughter (aged 3) ran after me shouting excitedly "mummy, mummy I just saw a little boy with a pump just like me!!"

It is the first time someone else has looked after my daughter since this journey began, and after meeting the tween team on Friday evening, my worries ceased as I knew she was in safe hands. Thank you doesn't seem adequate but please know that I feel this deeply.

This was the first year my daughter could get with the programme and started Elementary, she loved it. She didn't stop talking all the way back home in the car and she had learnt so many "soft" skills. She was quizzing us all the way back about how we felt about diabetes and telling us what she found frustrating about it. It wasn't so much permission to speak, but rather vocabulary to do it had been introduced and a sense that it was a topic that we were all interested to talk about.

The weekend seems to have had a profound effect on me - I've come back wanting to re-evaluate my life, put things into perspective, and I want to do more for the T1 community.

This year I found I got allot more out of the talks as now my son has a pump and it all made more sense - but actually the main focus for me and our family is how we approach it all and support him - the weekend gave me much to think about. I have many fond memories - but the main one was on the Saturday – my son was low and treating the low, and Jeff took time to ask him how he was. It really came through how much you as a team really care, and this was appreciated; thank you. We felt really welcome.

This was our first FFL and as a family thoroughly enjoyed the weekend and left feeling inspired, educated, supported, and most importantly motivated and at peace that we can live this life well. I will be taking all I’ve learnt not only for our own use- but to also share with other families on the list and also our local support group. Aside all the education the conference offers , I feel the biggest single most amazing feeling, which is hard to put into words, is the feeling like you’re in your own little diabetes world- around people who "get it" and that's a priceless experience.

Tom Karlya, I promised myself I wouldn't cry this year, damn you! I blubbed loads. Really touching & moving & filled with passion. Note to self, pack more tissues. Both my children were in elementary & loved all the staff. Thank you so much to you all for making me feel safe to leave them & making it pretty much the only worry free time I have. Sponsors, brilliant, yet again. Special thanks to Aileen Durkan from Animas who is always filled with warmth & loveliness.

The whole weekend is like a giant hug really and the only bad bit is going home.

My son (14) had a great time and is already annoyed that we have to wait until 2014 for the next Windsor FFL! He has been telling me all sorts of facts and figures from the teenagers talks so it has obviously worked. We have both decided he should bolus twenty-five minutes before food as opposed to ten. He also found it funny that CWD have bought the rights to the name 'children without diabetes' for when we find a cure and need to meet up!

My daughter (8years) was in the Elementary group, which has proved to be really valuable to her. She enjoyed being with other children with diabetes, and hearing them say things which she could relate too and understand. It has also helped her to understand how valuable having a pump will be. At present she is using pens and has been against having a pump until this weekend! Now she wants one like YESTERDAY!!!

We are diabetically recharged and feel ready to use all the information we have been given.

Your conference left us feeling empowered and so much better informed. We have a raft of notes and literature to work our way through now and of course it was lovely to meet other parents in the same boat. Thank you again for your tireless efforts to put such an exciting and informative weekend together. You and your team surely deserve a halo!
Selina and Henry

Please thank all the sponsors, they really add to the weekend tremendously, their patience with the children was amazing and yes we have the bag of goodies. Lovely to see JDRF and Rufus and Lenny of course. The hotel were fab too, I did tell them how excited we were about the event and they said how it is sooo different from the usual glum faces from work conferences. The staff smiled all day long despite the chaos we caused throughout the hotel. Thank you to everyone who came with their special magic again and can't wait for Glasgow!

This weekend has felt like coming home, to a safe and welcoming environment where everyone just gets 'it' without lengthy explanation or background. To put faces to the names who have been so kind to me was amazing. It moved me beyond words to watch my darling girl compare pumps with other little children her age, to say in her baby voice "Daisy, I just had a pin prick, did you?". To see her ecstatic face at the sight of a giant Kangaroo with a pump too! To drop my hypo unaware baby off at childcare, KNOWING she was in the best possible hands and not worrying for the first time in over a year. To see my other girl relax amongst siblings who know exactly what she has to deal with. And to most of all have FUN as a family. Thank you for everything you do, you have helped create the most fantastic D family and we simply can't wait to return for more events and meet up with people who really will be our friends for life.

We saw our son smiling!!! Full showing teeth and head held high smiling and he was away with his friends the whole time. That 'Friends for Life' phrase is so small but what it encompasses for our children is massive beyond words. His summing up was that he and his friends have decided, when there's a cure, they want a Children WITHOUT diabetes conference!! Our other son spent the whole weekend running round the corridors from zombies and such like. He's getting so tall but the thing he over-flows with at FFL is a sense of being 'care-free.' At FFL he just runs and plays without a care in the world! Thank you for both those gifts for my boys.

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