Here are selected comments from participants:
Talking to Jeff at the Farewell Breakfast, he mentioned a phrase that summarizes our participation this year at the CWD meeting.
"Blazing the Trail."
Year after year we have been participating in the summer conference. Every year has been a completely different experience but what has been the same since we started is that we have been Blazing the Trail.
Blazing the trail for Lucas by giving him the chance to learn about life with diabetes and to share with other kids that have his same fears.
Blazing the trail for us as parents and as a couple learning to cope with diabetes and providing the necessary support for our son and the whole family, and lately ...
Blazing the Trail, clearing the path for others who have come to join the CWD family by sharing with them our experiences.
As always, you did a WONDERFUL job. Thanks for all your patience and dedication.
Un abrazo grandote,
We've just landed back in England with heads filled with stories and hearts filled with wonder. Our friends here will be heartily tired of us as we tell tales of our adventures with CWD.
FFL exceeded our expectations on so many levels; we met heaps of terrific people, made friends, learned so much about living with diabetes and how to improve all of our lives through application and communication. Above all we realised more than ever before that we're not alone, that our challenges are shared by many and that where there's life there's hope. Tom Karlya mentioned a quote from the Escobars in his welcome speech, the one about bottling the essence of FFL so that one could open that bottle whenever one wanted. We couldn't know at the time what he meant; we do now.
We learned a lot about pump management, about better BG controls and about the latest technology but of greater significance was understanding life from our teenage daughter's perspective and learning that whilst diabetes control remains a critical element in our lives we don't have to like it - we just have to do it. We have to single out Joe Solowiejczyk for a special mention. Joe told us a lot of things that we knew - don't negotiate, be tough when it comes to diabetes management, all that stuff; but he made us see that it's OK for Phoebe to hate doing it and for her to get mad about having to test and having to be sensible all the time. Joe told us it was OK to be tough on these issues, that correct management is simply non-negotiable. We learned from Tom and others that asking for her BG numbers as soon as she gets through the door from school is not always a smart play; that we have to acknowledge her daily efforts to be a better person in all areas of her life whilst maintaining a healthy focus on control. We're still reeling from all that we've taken in; it'll take a while to review it all.
Phoebe learned that not only is she not alone but there are some pretty cool people out there who share her condition and are determined to do great things. Meeting Jay, Nicole and Zippora proved truly inspiring. Phoebe has great plans to be a top dancer and dance instructor - she hatched those plans at age 4, 2 years before she was diagnosed. Now more than ever she knows she can achieve her goals and that it's OK to stumble along the way so long as you keep the finish line in your minds' eye. She made so many new friends - with and without diabetes - and will be leading our charge back to Florida in 2009.
The Dads' group was an incredible experience for me. The understanding, sharing the common frustrations at not being able to 'fix it', the sense of being in the same boat and the pleasure in learning what we can do to make a difference in the lives of our children and our partners was almost overwhelming.
Meeting inspirational leaders like Tom Karlya, Natalie Bellini, Richard Rubin, Ken Moritsugu and so many others was a privilege. The CWD team were to a man, woman and young adult, outstanding; patient, helpful, knowledgeable and welcoming.
Above all we valued the opportunity to interact with parents, siblings and children with type 1. It really is 'friends for life' - it's the one true Magic Kingdom. We'll be back, and we're bringing friends.
A thousand thanks,
Lewes, Sussex, England
Dad to Phoebe (13), dx T1 and Hypothyroid 2001 (aged 6), pumping since Jan 2007
First of all our deepest gratitude for this wonderful experience. I wanted to share something which my daughter Sara (8 years old, dx 1/08) said on Thursday after a fun day with the elementary group: "The one good thing about having diabetes is that I got to come here." It made me cry because I saw her glowing face genuinely happy, as if she was proud to be a part of this group. Her pride was out of bounds when she met Sebastian Sasseville, Jay Hewitt and all the others. She has Jay Hewitt's autographed poster in her room and she loves explaining to her friends about him. She felt like at home and not the only kid in class with diabetes any more. I am extremely impressed by the elementary staff, to name a few: Elizabeth, Marissa, Sam, Intisar, Nabil, Joe. They are so good with the kids and made sure they were having fun. Sara loved DJ Miles and Harold even though she had couple of lows after Harold, but who wouldn't!
On a more serious note, we learned a lot regarding the latest in D care.
We had an informative chat with Bruce Buckingham. I feel more empowered regarding what we need to do to make sure Sara gets the medical care she needs. Sara tried the saline pump for three days and liked it. We have our endo appointment. next week to start the pump -- yeah!
I admire and appreciate all the hard work put in to making FFL such a big success. You, Jeff, Tom, Nabil, Intisar and all the parents who have devoted their lives to this cause, we salute all of you.
This was our first time but we have already started making plans for the next year and won't miss it for anything!
Thank you once again.
Thanks so, so much for putting this amazing conference together. I saw you many times during the conference, but you were always on the go and so never got a chance to introduce myself.
My son Max, now 10, was diagnosed in January 2007, and my Type 1 father-in-law and very supportive mother-in-law found the conference and signed us right up last year. I couldn't believe the amount of information available, and the camraderie. We have been fortunate in the amount of support we get from friends at home, but having the chance to talk to another mom about "What time do you get up in the middle of night to check your kid's BG?" is priceless. We are total fans and will come every year we can.
Last year we attended many management sessions (like Gary Scheiner's, who ended up being our CDE). This year I was better prepared ahead of time (being a seasoned pro with one conference behind me!), so I got to do the technology track and get clarity about research. I particularly liked all the DRI sessions and Anthony Cheung's. We have had Type 1 diabetes in my family for at least 40 years, but it wasn't until I attended the conference that I truly began to understand how it works, and to see where hope for the future really lies. I love how creative and passionate all the researchers are.
My six-year-old son, Michael, who does not have diabetes, loved having the freedom to talk about diabetes as much as he wants. Like many siblings, he is greatly affected by his brother's diabetes, and it was wonderful for him to have the chance to learn about it (from Norma Sue Kenyon!) and understand it a little better. Max, my D-son, loved making new friends (he's loaded up his cell phone with numbers) and is now officially addicted to Dance Dance Revolution from the exhibit hall. We also put together a very nice goody bag for Max's friend Phipps, who was diagnosed about 8 weeks ago. They didn't make it to the conference this year, but we are hoping to bring them with us next year.
Max and I had additional adventures on Saturday at Universal Islands of Adventure: during our SIXTH ride on the Hulk roller-coaster, Max's Omnipod PDM somehow worked its way out of the velcro pocket on his cargo shorts and went soaring out, out out....gone. We decided to stay at the park (he was still getting his basal from the omnipod) but called my husband at the hotel to let him know. He called Insulet to see if there were any reps left at the hotel. There weren't, but John Sandwell, the local Omnipod rep drove more than 30 minutes to deliver a replacement PDM out to the hotel that night; it was waiting for us when we got back. Thanks to them we only had about 3 hours without a PDM. Yay, Insulet! We also got VIP treatment from Steve, the paramedic working first aid at Universal that night. After we went to report the PDM missing to lost and found, they redirected it to first aid because it was a medical device. (We stayed at the park because Max was still receiving basal from the pod.) Steve went to search around the base of the ride for the PDM (which was never found) and as a consolation prize, walked us right to the front of the Ripsaw Falls ride.
While we were there in our conference shirts, I was approached by a family from England who were there visiting; their 15-year-old had diabetes, and they had never heard of anything like the conference. I also met a woman from Orlando with a 15-year-old son who wasn't familiar with the website or conference. I was happy to have the chance to tell them about what a great organization CWD is. Hopefully we'll see them at the conference next year!
Please go ahead and put me on your volunteer list for next year -- I would love to give a little back to the group that's given us so much. Thanks again for a fabulous conference!
You and Jeff and what you have started impacts our lives every year! It's always so weird coming home and not being around other kids with diabetes. My hope is that CWD will always be there for Saylor to grow with. She doesn't know life before diabetes or CWD. This is our life and if it weren't for you and Jeff making a place where she can "be herself and not worry about diabetes because there are a lot of us" as Saylor said herself in the first timer's reception, it would be a lot harder to deal with.
So thank you and we hope to see you in Marco.
As first timers, we were definately overwhelmed with all of the information at registration. I took a couple of hours to sift through it all, then headed straight into the decisions about which talk my husband and I would split up for and which we could do together.
Bobbi-Geo has come home with a new sparkle in her eyes, or should I say the old sparkle is back. The meeting she had with Joe and Natalie has affected her more than we can say.
I cried, I laughed and I learned a lot.
Thank you for this wonderful opportunity, we are hoping to inlcude our other children next year as well as my Mom.
Not a first timer anymore!
mom to Bobbi-Geo dx'd 04/06
Our thanks go out to you!
This was our third conference and the best so far for our family. My daughter, Abigail, is 13. She was diagnosed at age 9 and has been pumping since age 10. Sadly, she says that the conference is the only time all year when she feels "normal." We are working to change this, but 13 is a difficult age!
I just don't know what I would do without this annual infusion of support and camaraderie. I leave feeling energized. I know that there really are other people out there that face the same daily challenges that I do, and there is so much to learn from each other.
THANK YOU for all that you do. I had trouble last November with my reservations at the Renaissance and you helped me out with an email and a phone call. That was very kind of you.
Take care and thank you so much for bringing this all together!
Words can not express alone what we got out out of the convention. The people, the knowledge and the regained confidence in my son alone was worth more than a dollar amount. This is what we needed and this is what we got. My son Brandyn (15) was diagnosed in June 2008 and this happened at a time in his world when he was being recognized by his peers and girls as someone they liked. When he was diagnosed he became a little insecure that all of that would be lost as well as his baseball abilities. His friends at home have been very supportive but this weekend was one more very important piece to bring his confidence back up and encourage him that he is still the same person everyone has come to love. He bonded with so many other kids and adults there as well and looks forward to returning next year and becoming involved with locla groups in the near future.
First let me thank you for helping the "team" make this past week such a fantastic event! This was our first opportunity to attend. What an extraordinary event! We are living our lives differently now, counting more accurately, measuiring everything, not just some things, looking for a good scale to weigh food, pumping more effectively and differently, living better just from what we learned in those few sort days! We NEVER expected to learn what we did, from research to pumping to family support! My son who is six - Forrest - can't wait until next year! that comment alone, made the week that much more special! It was such a special week - we will attend again next year and possibly attend the Marco Island event in January.
Thanks again - would not change a thing!
With many thanks from our family to yours!
Denise, Lee and Forrest
This was our third year. I wasn't sure if we'd get quite as much out of it as in prior years, but I was wrong. We learned a lot, and enjoyed it very much.
I was able to really get to know some of the staff this year, and that was kinda neat. I liked that others wanted my opinion and valued my thoughts.
The conference, like the others, made diabetes almost fun for a short while. While we were still "all about diabetes" at the conference, it didn't feel that way and we had a great time. I think the heat took it's toll on Saturday at Universal as we heard lots of stories about lows that day. We were no exception.
We'll be counting the days until next years' conference at Disney!
Teresa and Katelyn
The statement, "words can not express," can only begin to explain to you what our family got out of this conference. I must say we've never been anywhere that we felt so welcomed. The conference was nothing short of fantastic. I've never seen an event on such a grand scale run as smoothly as FFL, it was outstanding. Thank heavens for the Internet or I would have never stumbled across the Children with Diabetes web site, one snowy day back in February. This conference has not only allowed us to meet so many wonderful people and gain invaluable knowledge, it has boosted our spirits, confidence and brought us even closer together as a family. Laura you and Jeff and the countless others that work tirelessly to pull this conference off each summer need to be commended. My family and I want to thank each one of you for the love, friendship, support and outstanding effort that you put into the FFL conference. We will never forget the experience and are making plans to attend next year's FFL Orlando.
With kindest thanks and regards,
Shelley and Vince 13 (d'x 02/2007) and Hailey 11
I think for our family FFL gives us that little boost that we need to get through the next year. We are able to live in a diabetes world (the FFL community) for a short while and feel okay with it, we are not outsiders. We learn from each session we attend and sometimes attend a session that we attended in years past just to be sure that we are still providing the best possible care for Matthew. And who can possibly absorb all that information in one sitting anyway. And each year as Matthew has grown, our issues are also changing and I know I can find answers at FLL.
The biggest impact FFL makes on our life with diabetes is the support. I know out in that big world there are people who understand exactly what we are going through. When I talk about Matthew at home with friends I fight back the tears, I don't want pity...when I'm at FFL I let them come and that doesn't scare me. My keyword for FFL is support and once a year we go to FFL to get just that.
Matthew 9 (dx'd 1/04)
First of all, thank you! I had an amazing, unforgettable time in Orlando.
As a 27 year old who was diagnosed at 21, I know I am not your traditional audience. I live in South Florida, and when I heard some of my blogger friends were going, I knew I had to join them.
I was inspired by all the families at the conference. They are so strong and so resilient and incredibly supportive of each other. I was walking down the hallway away from the exhibit area and a mom was sitting on the floor with her son. I could tell she looked frantic. She made eye contact with me and asked me if I had a pump. I answered that I did and asked her if I could help her with anything. She said that she thought her son was low, but that their meter battery had just died so she couldn't test. Well, of course I had my meter with me and with their lancet, and my meter and strip we were able to test her son and find out that he was not actually low but just exhausted from all the activities. I continued walking towards the front of the hotel and two families I had been in line with the night before for the banquet stopped me and asked me to sit in the bar with them and have a drink. They were so nice and so funny and we all traded contact information. Where else can something like that happen?
Overall, I have pretty good control but from the sessions I was able to attend with John Walsh and Gary Scheiner I think I have picked up some tips to be even better.
I got to meet people in person that prior to the conference I had only been able to talk to online. And you know what, they were just as nice, and just as funny as I expected. Kerri (Six Until Me) and I (and her husband) went out to dinner and it was so funny to hear the word that come out of my mouth coming out of hers – are you sure that is diet, can I get double portions of vegetables instead of those potatoes, etc. :)
I am still working on filling in the descriptions of my pictures, but you can view them in their set in my Flickr account: http://www.flickr.com/photos/saraknic/sets/72157606430306777/
Thanks again! I will see you next year with the rest of the adult Type 1 bloggers who we have convinced to join us – hearing about how much fun we had made them wish they came this year!
I can't even begin to explain how much FFL meant to my family and I. We learned so much that the doctors never told us. Mary who was dx 4/08 has been a new person since we left. I think with her the most important thing she learned was that she is "normal" and there are kids just like her going through the same struggles as she did. We did meet lots of friends but things were so overwhelming for us as first timers we really didn't relax with our new friends as much as we would of liked to.
Next year will be different. The sibling class that our 6 year old Anthony took really hit home with him. I don't think he understood (being the youngest of four and a bit spoiled) what was going on with Mary. Now he talks openly about diabetes and uses words like glucose and hypoglycemia! How amazing is that?
I want to thank EVERYONE that made this possible and the hard work that was put into this. Everything ran smoothly and was so well organized. I cannot wait till next year when I feel a bit more comfortable with the whole thing and take more classes and split up to take them. I took my father for the first half then my mother came for the second half. Now when Mary spends the night with her grandfather he can count carbs and actually go to bed not worrying about her. All I can say is thank you for the bottom of my heart!
(mother of Mary age 8 dx 4/29/08)
We were first timers to this years conference and next year we will be going back! I want to express what a great time we had but I find it hard to put it in words. This was a truly, truly an enlightening experience! I never felt -- well I should correct that we never felt -- such belonging before.
Everyone I had the pleasure coming across to meet from CWD was SOOOOO nice, in the elevators, at breakfast, at Universal etc., everywhere! We truly had the feeling of belonging. My son Alex (8) had a chance to finally be himself and not be afraid to wear his pump on the outside of his clothes. He was wearing it like a badge of honor! And I want to thank everyone at CWD for that you made us feel at home. I want to say CONGRATULATIONS to everyone for a great conference and the Pniewski family will see you next year!!
Lots of hugs,
Dawn dx'd 1998, Alex (Al) and Alex dx'd 12/23/03
Thank you for such a wonderful experience. I brought 2 of my 5 kids (the other 3 are younger than 5) with us. The oldest 2 are 8 and were dreading it! However, they had an amazing time! They want to return next year. The vendor exposition hall was incredible. I tried to thank as many of the vendors as I could. They really made learning a great experience for both of them.
I think that this conference has helped my son, Jake, to become more comfortable with his diabetes. His twin brother, Zack, and some of his "friends" at school call him "diabetes boy." Jake never really stood up for himself and the comments really have hurt his feelings. By the end of the conference, Jake was calling Zack "normal boy" and telling Zack that he couldn't come to the cool diabetes events. I think it really strengthened his self confidence and helped him to realize that he has a lot in common with a lot of kids. It also has changed the way that Jake thinks about our monthly support meeting that we have in West Chester. Jake had Adam as a leader during the conference and Adam regularly attends our group meetings. Jake said that he wants to come every month now. Yeah!
I have always tried to keep up with the numbers side, so it was good for me to attend the sessions on school advocacy, sports and nutrition and the psychosocial impacts.
Thanks to you and the rest of the staff for such a great experience!!
I have a sister who's 15 with type 1. The conference impacted my life because now I understand what she has to go through everyday. Meeting everyone at the conference was an amazing experience, it's like everyone is going through the same things I am. I'm thankful for the opportunity to go :)
My name is Lisa. my husband Michael and I and daughters Makayla (D) and Nina attended the FFL in Orlando last week on scholarship. I wish there were words sufficient enough to tell you all just how special and wonderful our experiences at the conference were.
I would like to thank every one at the CWD for the wonderful experience and opportunity that we had in Orlando. We were first timers @ the conference (attended through the generosity of a scholarship)and we cant tell you how valuable and awesome all the wonderful sponsors,events and especially the sessions were. We have some new tools to help with our daughter Makayla (newly diagnosed in Jan 08) and also a better understanding of Diabetes and our role as both parents and support for our child.
This conference was far more than we ever thought it would be, a bit overwhelming as it was our first time, but we are already planning on attending next year and every year thereafter God willing. Our daughter Makayla met some wonderful friends (new) and had a great time with all the tweens as well as the staff that facilitated sessions. My older daughter who is not diabetic and had very little understanding is now very active in her thinking and support of her sister. She now reminds her to take her b/s eat her carbs and to take good care of herself. We are so grateful for all the valuable tools we now have and we plan to start a local support group here in our town in Georgia to help others as well. We have TONS of wonderful information and many phone numbers and support from other families (and kids with diabetes) that we had met during our stay at the conference.
We enjoyed being able to give back a little bit by volunteering in a days sessions and it was quite a worthwhile experience. We are planning on doing it again next year of our own accord. CWD is such a valuable and wonderful organization helping our kids and their families. Thank you and everyone involved for your time, care,concern and dedication. We especially would like to thank Connie, Mary and Joe S ....all of whom were very helpful, patient and supportive to our family and guided us along our first time experience.
I also think the chat rooms are a great tool and support for both parents and kids. I am a daily attendee as are my daughters....Thank you again for all your wonderful work and dedication. It truly is a blessing to all of us deal with children with diabetes.
Collectively, the wonderful and informative sponsors, the terrific and dedicated facilitators and the wonderful staff of CWD and the many volunteers makes this a wonderful and special event that will always be something that we take with us and use(information) throughout our journey with Diabetes and our children....UNTIL THERE IS A CURE!
Thank you again so very much,
Wow what an experience! I'm not sure I even know where to start. It's taken me a few days to even put in writing how this conference has impacted our lives. Our daughter, Skye, was just diagnosed April 25th. At the beginning of the conference parents would repeatedly tell me "you are so blessed to be here so soon", by the end of the conference I knew why.
Two very important people at CWD must be thanked, Connie Smith and Mary Podjasek. These two ladies will be forever remembered in our lives. Not only did they guide me through everything at the conference but they opened there arms, heart and listening ear. Connie was so concerned about Skye's siblings and made sure they were introduced to others in there age group. I was able to meet so many other wonderful families and several passed along there emails. The sessions were amazing.
After returning home my emotions and the reality of how Type 1 has impacted our family become overwhelming. I know that this is not going away so I must approach it where diabetes does not control our life, but we control it. I received so much encouragement, knowledge and support at Friends for Life. I don't see how we could ever miss another conference.
The most important aspect of our experience was that Skye was able to contact, and that she did. Skye had a great time in the Tween section. She's still talking about her experiences and showing everyone the material on pumping and how it works. Skye was able to contact with a couple of great girls who all exchanged contact information. Together they are all looking forward to experiencing the "Teen" group next year.
Events like Friends for Life do not come together without the work of many helping hands. CWD has given so much to our family I hope that given the opportunity I can one day give back.
Tanya, mom of Skye dxd 4/25/08
We all had a great time at the CWD/FFL Conference. As first timers it all was very overwhelming. I don't think we missed a session the entire three days! My daughter and I felt as though we walked in as diabetes veterans (Rachel dx 7/2/04, pumper 3yrs, CGM 6M, goes to diabetes camp and is one of 5 kids in her school with diabetes-one in her class with her-how great is that?), but my husband and son, well not so much. I was hoping this conference would be good for them; it was! I even learned things I did not know from sessions like "advanced pumping" and "solving pumping problems" which were very similar; O.K. after having it twice, I think I still don't understand all of it.
I feel I left with something from each session I attended. The one I enjoyed the most, the one I will try to incorporate in both myself and my family. This was the last session I attended: "Making a Difference" with Larry Deeb. I wish this session had been more attended. It talked about children with diabetes in other countries who need basic supplies: "Life for a Child, Can You Help?" this touched me, and I am going to support it, bring it to my mom's group, and talk to my PTA Pres. about possibly using this as "Kids helping Kids" project for our school.
I can not even begin to tell you both how much I appreciated the opportunity to attend Friends for Life. Diabetes has been a big part of both my personal and professional life and being at Friends for Life felt like coming home. It was so incredible to be surrounded by so many people and their families with diabetes with such a positive outlook, thanks in large part to their interactions with CWD.
I watched as a little boy, who I met at the first timers reception, wondered aloud why he was there with his grandmother (primary caregiver who has T1DM) and his sister who also has T1DM. On Thursday night I watched as he danced on stage playing an inflatable saxophone all smiles. I talked to his grandmother on Friday in the glucagon session. Where she talked about how grateful she was to learn more about the glucagon she had had to give her granddaughter a month ago. I watched as a mother of a young child diagnosed only 2 months ago started the meeting out on the verge of tears and by Thursday was beaming and dancing with her entire family. There are no words to express how powerful these transformations were, to convey how these experiences will help these families and all of the others who have had a chance to participate in the family that is children with diabetes.
Jen, adult with type 1
Thanks to all who make FFL so special. This was our second year, and it was the greatest! Perhaps it is the "Christmas Tree Phenomenon" - each year you admire your tree and say "this is the best tree, ever!" but we really think FFL got better and we got more out of it this year.
In particular, we LOVED the fact that FFL "took over" the entire Renaissance Hotel! We were among the fortunate families that had rooms on site and we took full advantage of the compact layout (and glass elevators and interior balcony) to let our children have some freedom. This mostly entailed letting them run 50 steps ahead of us and/or using the elevator on their own, but it made the week very special and gave our kids the opportunity to connect with an extraordinary adult named "Joe."
When I finally met "Joe" Solowiejczyk (the kids and I were in the elevator TOGETHER) he said the nicest thing: Joe jokingly said he thought Marlene and Austin were orphans! I see his comment as a testament to the strong community you have built in CWD and FFL. That sense of community gave us peace of mind. We knew that when we opened our door and sent the kids out to play in the "CWD/FFL neighborhood," they were in a secure, safe and happy place. It all goes back to your original slogan: FFL is where kids can be kids.
Again, thank you!
Anne Marie & Mark
Austin, age 9, Marlene, age 11
We attended our first FFL conference and CWD event in 2003 at Coronado Springs. Our son had been diagnosed just the year prior at age 5 1/2 and I had been a frequent visitor to the CWD site. We immediately felt the warmth and comfort of the CWD family from the moment we checked in at the registration desk. We have never forgotten the numerous people that offered us help, suggestions, a shoulder to cry on or just an ear to listen.
I remember returning home to my support group with bags of goodies enough to hand out to several families. I felt such a connection with the FFL family I was determined to get to as many CWD events as possible - and that the military lifestyle would allow. We continued to attend CWD events and conferences but this is the first year that both my husband and I worked as part of the staff. We were determined to give back to others what FFL has done for us throughout the years. This is also the first year our son - 6 years after diagnosis actually spent the entire time off with "friends" and being responsible. He was hanging out with the other kids all over the hotel but would frequently check in (thank goodness for cell phones). I was at total peace knowing that while at a FFL event and he was wearing a green bracelet that there were people around that would know what to do if he needed anything.
The conferences are always exhausting - we need to add a break period for naps or pool time sometime in the middle -but always spectacular. Every year they get bigger and better!!
I love seeing familiar faces and meeting new friends. Nobody knows our life better than our CWD family. Counting down the days until our next CWD event!
Rebecca & Robert
Zachary dx'd 4/2002 and Kathlynn
My family and I cannot thank you enough for organizing this massive happening FFL. We are so blessed to have you. FYI I was the mom who was nervous about my son going to the parks as a first time teen. I thanked you after words for calming me down because he had a wonderful time. ( the crazy thing is that I actually teach yoga and meditation 2 times a week )
The conference reinforced several things for myself and my family. Here is my list:
- we are not alone in what we have to go through every day
- there is a world out there of resources to help and support our entire family, so that no matter what happens we always have a place to turn
- it is incredibly heart warming to know and hear all of the researchers talk with such passion and intelligence about their work to make my sons life better, longer, and healthier
- all of the daily work to keep good control pays off as current statistics show,so no matter how exhausting it is day in and out, keep it up. If Jay Hewitt can do what he does we can do what we need to
To sum it up this years conference reminded us to stay strong, keep up the good work, and know there is an abundance of caring highly intelligent people out there who wake up everyday looking for ways to make our sons life better.
With deep gratitude,
(mom of Max dx 2/04, and Joy)
Well we are finally home after an exhausting day of flying. We caught 4 planes (Orlando to Denver, Denver to LA (just learnt of the earthquake there, hope everyone is ok), LA to Auckland and finally Auckland to Sydney). We arrived home to very cold weather. I am freezing. My boys both wanted to go to school today and tell all their friends about the wonderful time they had at the CWD conference. Connor my 10 year old was bummed that he didn't get to say good bye to all his friends that he had made there, to the point that he cried. I will find out what their names are so that he can email them as he forgot to get email addresses. I know one of them was Doug Burns' son. Friends for life certainly had an impact on him. I didn't see him for 2 whole days he was having so much fun. Some people might say that it was stupid allowing a 10 year old to just wander off and do his own thing but he was in really good hands and I had no fears at all. And he really grew in those fews days. Gave him a chance to be with kids that understood what he was going through as a Sibling of a kid with diabetes. I applaud CWD for enabling an environment like this.
To all the parents that I got to meet, I wanna say 'Welcome to our family'. Can't wait to see you all again. To the beautiful Ragusa family who took us in a couple of days before the conference, I want to say a huge Thank you. You guys are wonderful and we love you. You took us into your home, didn't know us at all, but welcomed us like family. You truly are our Friends for life. To the gorgeous lady who sat next to me in the very first focus group, and then at the table in the first timers reception(you sat in between me and the girl from Maine) and you had the yellow clappy hands, I just want to say you are beautiful and I didn't even get your name. I would really love to keep in touch. To Loren (mum to Chase), I want to say it was fantastic meeting you and your gorgeous little boy. Please keep in touch. To the Pawlowski family, I want to say thank you to Sarah for looking after the boys on Wednesday, to Melissa for watchin them in the afternoon and to Chris for allowing your kids to look after mine. They're a handful.
To Laura, Nabil, Natalie, Joe, I just want to say "You guys rock." I had a blast, I had a ball, I learnt alot, I cried alot, I ate alot, I want to say a huge 'Thank you'. We are all different from different backgrounds and lifestyles but we all have that one thing in common that brings us all together, we have someone that we love with Type 1 Diabetes.
And finally to Jeff, the humbliest of humble men, I wish I could have talked to you more, the biggest Thank you of all goes to you. I am so glad that I was a part of this. A first timer this year but hopefully my family will become lifers.
Thanks from all of us, to all of you!
Robyn (mum to Cody - DX 8 Jan 2007 aged 3, Connor aged 10 and Katie aged 17)
Seems like such a simple question, what did the conference mean to your family?
Simple answer -- the world. My daughter Maura (9yr old, diagnosed 2 years ago) felt like a normal kid, enjoying everything, and not feeling different. Plus her numbers for the three days are fabulous!.
My teen age son who is not diabetic could "vent", and also see how others deal with the disease whether diabetic or a sibling. The trip to the park is a not only a great time, but a great learning experience for him also.
They both feel like they "belong", like a family reunion!
My husband and I, this is our second year and learned more this year than last.
Like the children said it feels so comfortable to talk with other parents and be with other parents who know how we feel. The speakers and the exhibits are fabulous! Especially Joe and Bob. I was able to convince my husband to go to Bob's stress management lecture and it opened new doors to dealing with our day to day lives. And what can I say about Joe, what a blessing! His understanding and insight is amazing. Of course, my daughter's not to thrilled over the "non-negotiable" terms for diabetes that Jo suggested, but much more compliant than before conference!
This was our first year at the Friends for Life Conference. Helena is 6 years old and was diagnosed in 3 years ago today and I finally felt we were all ready to come. Helena loved spending time with the children and I think she really learned a lot, she was with the Elementary kids and Elizabeth was great with her. My son also loved spending time with the 4 year olds.
I always thought I had such a great knowledge and perspective of my daughters condition. For the most part I think I was right, but I was able to view things through others and really get a better round about knowledge then I had before. I learned a lot from the DRI sessions I attended. I absolutely loved the group discussions to hear what other parents are going through and just to know that they all know exactly how I felt. I have to say my absolute favorite mind blowing session was "It's not just a numbers game" with Joe Solowiejczyk. He was amazing! He made me realize how much of an emotional stress I had inside and how to deal with that. He gave me such amazing insight into how Helena must feel and how to deal with her outbursts and that it's ok for her to feel the way she feels sometimes. I definitely look forward to attending his sessions next year and possibly sooner.
But I have to say the best thing I believe that has come out of this amazing weekend was Helena found a friend for life and desperately misses her already. Her name is Mary and she was only diagnosed 2 months ago. Her family was so brave to come so soon after diagnosis. Helena and Mary clicked immediately and I know they will be friends for life. I am attaching a picture of them and also one of Helena climbing a wall at universal....which I am sure she got the courage and will to do from the positive messages she received at the conference she was determind to make it to the top and ring the bell and she did!!! !!
I already know I will definitely be there next year...
Thank you so much for creating such a wonderful conference and I look forward to next years and would love to help out this time since I won't be a newbie!
Words can not express alone what we got out out of the convention. The people, the knowledge and the regained confidence in my son alone was worth more than a dollar amount. This is what we needed and this is what we got. My son Brandyn (15) was diagnosed in June and this happened at a time in his world when he was being recognized by his peers and girls as someone they liked. When he was diagnosed he became a little insecure that all of that would be lost as well as his baseball abilities. His friends at home have been very supportive but this weekend was one more very important piece to bring his confidence back up and encourage him that he is still the same person everyone has come to love. He bonded with so many other kids and adults there as well and looks forward to returning next year and becoming involved with locla groups in the near future.
Thank you for your time energy and committment to CWD.
The conference has impacted us by the fact that our daughter, diagnosed 10 years ago walked away saying that she is proud to have diabetes.
We have learnt about new initiatives in the research fields.
We have learnt about additional choices for CGM.
Paulina has made new friends.
Most of all we walked away with a sense of awe and inspiration.
Awe at the magnitude of the event, combined with the precision of all of the lectures combined with the quality of the faculty.
Inspired by the thoughts that hopefully soon, either the mechanical or biological cure will be upon us.
We came away seeing a beaming light at the end of the tunnel we have been inside for over 10 years.
I would like to offer the support of my family in order to help the CWD organization. Feel free to call upon us to assist in your work.
With heartfelt appreciation and gratitude,
Joan, Jack and Paulina. Along with the entire family.
Each year that we have attended the conferences we always walk away with many positive feelings. This year we continued to learn new ways to manage Molly's disease and the ever changing technology that assists us - even when we thought we were already using it to the best of our ability. We found our hopes renewed when we listened to experts speak about working on cutting edge therapies. It was, once again, so heartwarming to see Molly run around with no worries about what anyone would think as she checked her sugars and beeped and did her mental math before her meals - because all her friends were doing it too! It was also wonderful to see Andrew (who doesn't have diabetes) make fast friends with someone who does have diabetes - and give him a different perspective and maybe a little more understanding of what his sister deals with every day. Connecting with other parents is always such a warm fu zzy because it reminds us that no matter how far apart we are, we are never alone in this.
We have all come home a bit exhausted (in a good way), but at the same time recharged and with a renewed confidence that we can take on this thing called diabetes and everything that comes with it.
Thank you so much to everyone who works so hard to put the conference together!
Bill, Chris, Andrew, Molly, Elizabeth and Benjamin
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Last Updated: Thursday August 10, 2017 12:12:17
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