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On March 29, 2008, CWD Founder and President Jeff Hitchcock hosted a chat to discuss CWD becoming a member of the Johnson & Johnson Family of Companies. The unedited transcript of the chat is below.
Jeff Hitchcock Marissa, 20, dx'd 9/1989 (216.68.227.23) Sat Mar 29 02:11:05 PM EST 2008
Our chat about CWD joining Johnson & Johnson will begin at 3pm Eastern. (Yes, the clock in the chat rooms is an hour off.)
what this chat all about
See:
http://www.childrenwithdiabetes.com/CWDJoinsJnJ.htm
k
kool how long had the cwd been runing
CWD has been online since the summer of 1995
that a long time
Hi, how funny, Seth was born in 1995
that kool
hi
hi heidyn
hi Chelsea
how are you
i doing so so how about you
room must have been cleared, there aren't 50 back messages
I'm ok
Our chat about CWD joining the Johnson & Johnson Family of Companies begins in 10 minutes in the CWD Room
hi Heidyn, Chelsea, Jeff
Heather, Colleen and anyone else still hanging out
hi Iana
how are you doing?
Good afternoon. How's everyone doing today?
ok,headed over there now
thanks..
doing ok jeff
wait a minute,I'm in it
pretty good
I need some caffeine
brb
Just waiting for the chat to start...
lol Heidyn, coffee sounds good
me too ColleenB
Hello All---congratulations again Jeff on the GREAT NEWS
Thanks ... we are very excited.
Hi.
Gee---did your phone or email get any attention over the last 24 hours--tee hee
Hi Ms. Ellen
hello everyone. My name is mindy, and I'm pretty new around here.
CONGRATs To Jeff H...
Nice to see you Diabetesdad :-).
Thanks for scheduling a chat to explain more about the exciting news.
Diabetesdad -- yes, yesterday was very busy -- in a good way
Hello everyone
Hi Mindy---our house is your house....welcome!
hello to all
JH--as well it should be.
thank you.
I guess we can get started officially -- so let me welcome you all here and offer to answer any questions you might have.
If you haven't seen the news, CWD is now part of the Johnson & Johnson Family of Companies. More details are at:
http://www.childrenwithdiabetes.com/CWDJoinsJnJ.htm
I like the videos (of everyone but me of course):
http://www.childrenwithdiabetes.com/Videos.htm
Jeff, what will change and what will remain the same?
Hi Jeff--Congratulations. Bill and I are wondering how our other sponsoring companies have responded to this news--like Minimed, Accuchek, others not part of JnJ?
Ellen -- excellent question.
Most importantly, CWD's indepence will remain unchanged. The additional resources will allow us to do more online and to hold more conferences.
will the conferance fees be cheaper?(hoping..)
Janace -- another excellent question.
We've had a chance to communicate with all of our sponsors and advertisers and in general the response has been positive. These companies are committed to making a difference in the lives of people with diabetes, and we are eager to continue to work with all of them.
Heidyn -- conference fees are as low as we can make them. For families who need help attending, the Education for CWD Foundation (www.ecwdf.org) offers both family scholarships and scholarships for young adults.
I'm hoping the fees won't go up! Jeff, also, I hope we don't lose the "special" feel of the conference.
One of our goals is to be able to hold more conferences, both in the US and in other countries.
I'm glad to hear the response has been positive. I learn so much at the conferences especially about new products, getting to really ask questions while playing with the meters/pumps etc. I don't know of any other place I would have that opportunity. I've appreciated ALL the sponsors' efforts and generosity and hope they will continue.
Janace, the only change at Friends for Life this year will be -- MORE PEOPLE! We're expecting over 2,500 people. And Laura remains in charge of CWD conferences.
nice leasninge got to go get paint now bye
Hi Jeff, will CWD hold more conferences for families with kids who are non-pumpers?? It seems most conferences are for pumpers. Shelby has tried pump twice, wasnt for her. Any more possibly on the West Coast?
Ellen -- A key part of our goal is to grow our conferences, and we have the committment from J&J to do just that.
I have to tell you Jeff, from someone being around a while and in many different auspices---I have never seen a situation handled so open and with such sincerity. It was comforting to see everything so accesible. You and your team and those at J&J are to be commended. No one likes change and perception is a powerful thing---The way this has been handled gives most of us old timers the confidence that the way Jeff Hitchcock did things is the way Jeff Hitchcock will see to it that it continues. Clearly this would not have been done unless you thought more kids would benefit the way you have perfected how it should be done---and at the end of the day---that is what it's about.
Betty S -- We are looking at holding regional conferences on topics other than just pumping, such as the upcoming Bethesda "Focus on Technology" conference. And yes, we will continue to look at new parts of the country -- and we are planning on a return trip to Seattle.
How soon before you'll have the list of new conferences available?
Dave -- For now, the conference list for 2008 is it. We're looking at more for 2009 and beyond, but it takes a while to get these things scheduled.
Diabetesdad -- thank you, and I can assure you and everyone that first and foremost in my mind has always been making sure that CWD can continue to make a difference in the lives of our families. That will not change.
Excuse me for interrupting. As a life-long friend of Jeff's, I just wanted to pop in and congratulate him as well. I've watched Jeff (and his team and supporters) grow CWD and his passion and commitment to CWD are just incredible. I know Jeff is excited about the new relationship and he looks forward to all the additional resources that he'll have at his disposal for the CWD family.
Way to go!
I hope you all have a wonderful weekend.
By the way -- as we look to expand and hold more conferences, we will need more volunteers to help. If anyone is interested, please email me -- jeffh@childrenwithdiabetes.com
Hi Tim -- thanks!
Hi, congratulations, Jeff, for expanding CWD. Since it would take nothing less than the second coming of Christ to get me to Orlando in July, I am looking forward to conferences held on the East coast, as I am sure so many need conferences in the Midwest, as well. As an over-user of your chat line, I appreciate the wealth of information on this site. No other site is as comprehensive.
Jeff, this will be our 4th year at CWD FFL, and I just never took the time to tell you how much YOU ARE APPRECIATED!!! You are so incredibly dedicated to what you do for our kids! We commend you for planting the seed and starting a dream with Laura to help other families in need. Your website was what helped us to get through a very challenging disease. Thank you for what you do and are doing for us all. You truly have a BIG HEART. Congratulations Jeff Hitchcock!
Toni, I understand about Orlando in July, but this year it's all indoors -- you never have to leave air conditioning!
Betty and Toni, thanks for the kind words.
Jeff, I appreciate the offer, but will wait till you get somewhere closer.
Toni, where do you live that you'd like a conference nearby?
I am forty five minutes from New York City. I have been to Disney many times, but she is 11 and would want to go to the theme parks, if there. Not in the heat, though.
Well, there as at least one Conf. in Philly.
Bethesda will be in late Sept.
Philly is good.
See http://www.childrenwithdiabetes.com/activities/ for the schedule.
The Bethesda Focus on Technology conference would be convenient (plane or train) and should be quite interesting.
Brenda, I'd like to thank you too - you have been so generous with your time and energy as has your whole family. I imagine you're a big reason so much of this runs smoothly and feels nurturing.
Focus on technology -- that would interest us. I also wonder if Jeff -- since he will be more affilated with Lifescan -- can get more info. or perhaps push J&J to bring out the nanopump from Diabetech. Also news on the infrared implantable sensor they were developing.
If you have never been to FFL in Orlando, you don't know what you are missing. The opportunity is there to see all the new technology, meet the vendors, hear great speakers. Jeff, Brenda, Laura--Loretta and I many times have said we wouldn't survive diabetes without CWD! You know I am a fan.
Thanks, Ellen. I do my best to help.
Jeff, I have heard people ask if the ChildrenWithDiabetes Foundation and the Education Foundation were also purchased in the JNJ deal. Can you comment on that?
Toni, CWD is independent from LifeScan and Animas and all I can do is what I do for all companies, which is to encourage innovation.
Is the CWD website the best online source for finding information on the cgms? We didn't know it was out, until we saw the info on the CWD website, or I should say from your weekly emails "What's New in CWD Newsletter". Your newsletter is extremely helpful and keeps us informed. Thanks Jeff and thank you Brenda for your help. HITCHCOCK FAMILY ROCKS
Jeff, in the past, reps from various companies were not supposed to chat in the rooms - unless, of course, they were there as individuals with diabetes, or as parents of kids with diabetes. Will that change in any way?
Michelle -- The CWD Foundation and the Education for CWD Foundation are independent groups and were not involved in the deal. I'm very happy to report that the CWD Foundation was a shareholder in Diabetes123 (the previous CWD parent company) and will receive a very significant amount of money as a result.
BettyS -- I try to keep our couple of pages on CGM updated as I can. There are other sources, like the CGM companies.
Jeff, what user info on the website will be shared with companies, if any? What info will remain confidential?
Judith -- The CWD chat rooms are for support for parents, kids, etc. That has not changed. And to address your question specifically, the chat room policy is that we are not a place for commercial discussion (except for specially scheduled chats, which we do on occasion).
BettyS, the information on continuous monitoring under the forums on CWD is top notch. I would seek out all payam777's posts as well as EmmasMom and Mama2H's posts for a good start.
Michelle -- there CWD privacy policy remains unchanged. We don't collect idenfitiable data, and we don't share anything, including web logs. We do publish overall traffic data -- open to the public at www.childrenwithdiabetes.com/stats
Jeff, what can be done to get more money allocated for Diabetes Research from our Congressional People? We always here about some famous person getting them to allocate funds for cancer, spinal cords, etc. With all the Stars that are coming forward and doing commercials for diabetes, what can we do as parents to see if they would step up for more research for diabetes? And thanks Toni.
BettyS -- excellent question, but I don't know the answer to that. I did see a news report about Angelina Jolie being diagnosed with gestational diabetes ...
Regarding privacy, I forget, do the companies ever use the poll data? I imagine that info would help in developing products, etc.
Michelle -- poll data is open to anyone, and it's all anonymous. I hope that companies look at the poll results to help them improve their products.
I, personally, would like for the pump companies to use this site as a resource so they will be encouraged to produce smaller, wireless pumps and implantable or noninvasive cgms. Pumps are still way too large considering the technology available today.
Well, this is a blue ribbon day for the CWD community for certain. Or shall we say grey ribbon?
This is the only website "CWD Chat Rooms" that I have ever been on. I've only felt safe on this chat room discussions. I know it is secured, so I feel comfortable. Although, I must admit, not sure how these really work, but I know its saft
Toni, at our Friends for Life conferences, we hold Focus Groups on the first day, and those are a great opportunity to give feedback to companies.
The focus groups at the conferences are a great place to provide feedback...I bet they really hear what the parents and kids say in those.
Frustrated that Animas was pursuing technology that perhaps J&J, upon acquisition, may have abandoned. Not sure if they have abandoned it, though.
We were so excited to participate in the glucose tab focus groups long ago, to try "sour apple" flavor and then see it hit the market.
Trent is still waiting for chocolate, but I don't think it was a big hit!
Looking at getting a cozmo pump, Any advise would be helpful!! Thanks!!
Marissa's favorite glucose tablet flavor is watermelon
Erin's favorite glucose "tablet" is currently jellybeans.
Cher -- I always advise people to look at all pumps, look at the features that matter most to you, and to meet your local representative.
My favorite flavor is watermelon, I'm not diabetic, but do get hyperglycemic from Graves Disease. Shelby's glucose "tablets" are gummy bears
thanks we are changing insurance co and having a difficuly time with med and test strips cost.
Hi Jeff! A heartfelt congrats to you. CWD is wonderful and was soooo useful to me in the early years (and I still have friends from here!) Thanks for all you do for the D world and all you have done to help me with my many JDRF projects. The D world would be much the worse without you and your family's efforts.
Moira, thanks. I appreciate it.
and I love the Ellen video! ha ha
We all love Ellen.
I'm very happy with all the videos.
Marissa is so lovely, empowered, empowering...
and grown up!!!
Are you talking about Ellen DeGeneres? Also, there are some fantastic videos on YouTube about kids with diabetes. Really worth a look Or, is that what you all are talking about? I'm lost
Better than Ellen Degeneris == Ellen Camelsrfun!
BettyS--CWD videos:
http://www.childrenwithdiabetes.com/Videos.htm
aka the Goddess of diabetes support
Marissa looks so young, younger than a college student.
Moira, indeed, Marissa is almost grown up. She's in her junior year of nursing school. I'm very happy to say that she's doing well in both school and with her diabetes care.
I loved Dr. Ken's green bracelet!
that is great jeff. I dread sending lauren to college in two and a half years!
Can we consider inviting some politicians to speak at the conferences so they get the true flavor of what having diabetes is all about. Perhaps giving open and/or public invitations to some of them. It may well be that most are simply ignorant about the disease.
Michelle -- I'm glad you saw the bracelet!
Dave -- that's a very good question (inviting politicians). I'm hoping to do just that for the showing of the CWD Quilt in Washington, DC in August (see link above).
Dave both JDRF and ADA have hill blitzes at least once a year. Last month JDFR families met with over 400 Senators and Congressmen in one day. ADA has a big day coming up in June too
and the more times they hear from us all the better, so good idea
Dave, I think that's a good idea. How do you envision their participation?
It was great having people from FDA there last year - they were very open to hearing what people had to say.
BTW I sat on a plane for five hour next to John Kerry Thurs night! He got an earful LOL
Seeing them on the hill is different than THEM seeing US (families with diabetes) trying to live and vacation
My friends at the FDA who came to Friends for Life last year said that it was a great experience for them.
Michelle we need to pick a nice one to send on vacation with you!!!
Yay, Moira. Chuck Schumer, who supports most diabetes funding, so no complaints there, was on our Channel 12 a few months back stating that "Type 2 Diabetes was the most serious form there is." Kept repeating that.
Well, I mean vacation at Orlando. . . Kind of.
How about living and learning at conferences?
I know I was teasing. I think it's a great idea. One hold back might be that elected officials can no longer accept trips. they'd have to pay on their own.
They don't want to vacation with me. We camp and canoe.
Do you think there will be an opportunity to provide more activities or conferences that focus on the needs of young adults with diabetes?
CHUCH SCHUMER said that?? grrrrrrr
Well, if we invited people in the districts where we were having conferences they wouldn't have to travel.
we can NEVER go to the conf as lauren is always at her diabetes camp. sigh
good idea michelle!
Ellen -- we will definitely be expanding the programming for young adults at Friends for Life. That's been in the works for some time.
Congresspeople in FL. Congresspeople in Bethesda, etc.
Moira, the Conf. is later this year. Lauren still at camp 22-29 July?
He was not alone saying it, as I recall. On Channel 12. Type 1 diabetes in children is RARELY acknowledged or mentioned in the media. Media concerned with growth of Type 2 diabetes and prevention. Never mind that most children will develop Type 1 Diabetes. I would kiss the ground if she had Type 2.
That is great. Young adults are such a void in the D world of support and outreach.
yes brenda. all summer now == but ellen keeps saying I should go alone! maybe some year . . .
Jeff how else will CWD be enhanced as a result of the J&J acquisition?
Have you guys seen Dr. Paul Strumph speak? You should get him some year. he is funny, smart and on point. people love him.
Ellen -- In addition to the goal of holding more conferences, we are looking at expanding our online presence to include new and evolving technology -- plus, even more importantly, we will have additional staff!
Jeff--Don't forget there are adults who come to CWD who are type 1 and over 25. There needs to be some way for them to meet up. Sarah doesn't know any type 1's and she lives in a big town.
I imagine we will get to show the quilt more. That was part of the acquisition?
back
That is a great awareness campaign.
Janace -- indeed, we are looking at expanding the Young Adult programming.
Michelle -- Yes, the Quilt for Life is part of CWD.
Michelle, I would suggest making it a postive approach in an effort to bring any additional participation from any and all politicians. They are always looking for any publicity they can get that will enhance their image. If a well recognized politician(s)were to participate directly, they or their staffs would certainly make it common knowledge.
Michelle, where do you think the quilt should be displayed? It's too big to be displayed at regional conferences.
Will the quilt be displayed at FFL this summer, as well as on the mall in DC?
Brenda, I don't know really. Perhaps other diabetes conferences?
U
Dave, easier said than done. We were at a local support group meeting a few weeks ago. Our local Congressional rep was in town and invited to attend, 4 min. from his house. He didn't show.
Judith -- yes, the Quilt will be shown at Friends for Life and in DC
Yes, Judith.
UN Unite for Diabetes or ADA or AADE?
Michelle, I didn't know you had a Maya, congratulations. Also, if you guys aren't signed up for Jeff's weekly newsletter (email) "What's New in Children with Diabetes?", you really need to to that. Jeff the info you provide, is so outstanding and helpful. I know you put alot of work into that. THANK YOU JEFF
THe quilt was displayed at the ADA Sci. Sessions a few years ago and will be just before AADE this Aug.
i guess i missed the chat??
BettyS -- thank you again. And the "What's New" will continue (I've been working on it a bit earlier today).
Stacey! Good to see you. How's Jesse doing?
Yes, Brenda, more opportunities like that.
BIG.. and getting bigger...
Betty, you should hear the Maya story! It's great, but Michelle should e-mail it to you.
I miss all you guys.. having CWD withdrawal here....
The issue is getting ADA/AADE to allow us to display it and to have the room to do it.
Thanks Betty. She's 16 months old. Monogenic diabetes. Almost as good as Type 2.
It's after 4pm and I need to sign off. I'm going to leave this room open for several hours and will post a transcript later.
I'll also be online Wednesday evening, 9pm Eastern, for another chat about CWD joining J&J. Thanks everyone. Bye for now.
take care jeff...
Maya is soooooo delicious !!!!
Thanks so much Brenda and Jeff
Brenda, I guess I was just hoping that with JNJ, the problems with showing the quilt might be solved easier. I think it is very moving.
Ciao, Jeff!
Bye Brenda, Jeff. Congrats, once again.
Michelle, you can get it from Jeff or Laura. Thanks Jeff and Brenda and all the other CWD families. Michelle, will you be in Orlando this year with Maya? I still remember us meeting up 3 years ago and some helpful info you gave me about the other uses for glucagon. A belated thank you.
Maya will be in Orlando. In childcare! God help them. Just kidding. She is a love.
I'm glad I was able to help with the glucagon info!
we can say she's 5 and i'll take her in my group...
Does anybody know how to get around the 4 year wait before you can get a new insulin pump? The one we have doesn't meet our needs as well as we would like.
Gotta go get lunch and promised kids to see "Horton Hears a What?"
Michelle, my son also has monogenic. However, his is not the Kir6.2 mutation that often responds to sulfonylureas.
Dave, talk to the pump companies. If there is a pump you like better, they might know how to do that. By saying one of their features is now medically necessary.
Dave - would your endo write a very specific letter of medical necessity - describing just that??
Bye Jeff and Brenda. Thanks!
Judith, I'm sorry he is not Kir6.2. It has made life easy. She was on a pump for a year. That was tougher.
Some insurance companies will replace in less than 4 yrs....
But I guess you know how tough it was,since your son had it years ago when things were even tougher.
Michelle, our endo has sent several child/parent pairs to Lou Philipson at Univ of Chicago. The first child treated, Lilly Jaffe, is the granddaughter of a family practice doc who'd worked our camp for years before she was born!
Maya's story should be added at the jdrf site...
The mother/son there are our endo's patients, and he recently referred a newly dx'd 2 mon old girl and her father, also dx'd at 2 mons
Maya's endo in Allentown PA worked telephonically with Philipson to move her from her pump to glyburide. I was also in touch with Lilly's mother who was tremendously helpful to me.
telephonically ??? is that a new word???lol......
Great that pills are working for Maya!
Sounds like a useful word...
What is glyburide?
Judith what mutation does your son have?
How old was Maya at dx?
Dave, glyburide is a pill. For children diagnosed under three months, there is a slight chance that they have a rare form of diabetes that can be treated with pills. Maya has that.
Michelle, I have not heard a name for it. He was the first in the world discovered to have it, but within a couple months there were about a dozen other world-wide found to have it.
She was diagnosed at one month.
Dave, read about it at www.monogenicdiabetes.org
And his never responded to pills?
And Trent does or does not have the mutation?
I am told Maya might not always respond to pills.
Pills were not tried for him.
Trent is biological to Tim and me. Maya is not. We are in the process of adopting her.
She had diabetes when you adopted her?
Why didn't they try pills for David?
I'd love to talk more with you.... My email is Judith@cwdsmail.com
A good deal of the research into monogenic d is done in England. Some info at http://www.childrenwithdiabetes.com/dteam/2008-02/d_0d_f2c.htm
umm....hi
From that jdrf site:
There are many forms of monogenic diabetes, and these are due to mutations in different genes. Some can be treated with oral medication, others cannot.
Not all the mutations can be treated with pills.
dose anyone knoww any good place to do shots?
The adoption isn't final. She had Type 1 diabetes when we got her.
Has David's mutation been identified? Clearly, it's not the Kir6.2
I'd first heard about Hattersley's work at Exeter several years ago, from my daughter who is a pediatrician at duPont in Wilmington DE. The endo there had mentioned it, when he heard how young Dave was at dx
I know they can't all be treated with pills. But I thought they tried it on everyone, no? If they have the single gene (monogenic) diabetes.
I guess they just know certain mutations don't respond?
I think the docs are still learning about this and so few people have the mutations.
Gotta go. TTFN
There are many different mutations....
Bye Brenda
Yes, it's so uncommon that the endo doesn't really know how to advise us.
Bye Brenda.
Nate:http://www.drgreene.org/images/cgdiabetes/19209.jpg
http://www.drgreene.org/images/cgdiabetes/19209.jpg
I gotta respond to a certain baby waking from a nap.
Nice chatting.
Good luck, Michelle...
Bye all
Oops. My address is Judith@cwdmail.com
Just for clarification: "Monogenic" diabetes means there is a problem with a single gene, but it's not always the same gene in every case.
Really gone...
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Last Updated: Saturday March 29, 2008 17:38:38
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