anyone else going to philadelphia?

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momhatesuc
Regular Member


Date Joined Sep 2006
Total Posts : 78
   Posted 10/8/2007 6:06 PM (GMT -7)   
I guess I filled out a survey on here, I don't really remember but I got a phone call today about going to an advisory board meeting about UC by a pharmaceutical company.  It's next month in Philadelphia.  I haven't said yes yet, I'm a little nervous that it's not legit.  Is anyone else planning on going?
Leslie, 29~ left-sided UC diagnosed in 1999
9 asacol x day
nightly rowasa (as needed)
prenatal vitamins


SnookieBow
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 10/8/2007 7:39 PM (GMT -7)   
I got this phone call also. The woman who left the message said her name was Michelle.  I couldn't make out the name of the pharmaceutical company though.   There was a message on my answering machine when I got home tonight. 
I am wondering about it also.  I understand your concerns. Did you talk to a person?  What is the name of the company?
Snookiebow
 
First flare:  August 2006, diagnosed September 2006-
Dipentum and Entocort September and October 2006- now trying Asacol
Garden Of Life:  Primal Defense, Digestive Enzyme, and FYI
Glutamine Caps, DHEA, , vitamin E, Capryl, Turmeric & Bromelain
Omega 3- Fish oil, Biotin, Cal-Gel
Vitamin E enema & occasional Rowasa enema
AloeVera juice


UCreallySUCKS
Regular Member


Date Joined May 2006
Total Posts : 260
   Posted 10/8/2007 8:37 PM (GMT -7)   
I also received the call today from a woman, though I forget her name.  Supposed to be beginning of November sometime (9th and 10th I believe).  When I have the plane ticket in my hand, I'll believe it.  I know there are companies out there that will pay to get information on diseases/treatments, but you have to be careful nonethless.  You never know if something like this could be made up, for whatever reason.
---Nathan---  31 yr old male
Diagnosed May 2006 w/severe UC
Currently in mild/moderate flare
2 400mg Asacol 4X day
20 mg Prednisone
1 multivitamin/day
2 grams calcium/day
75mg Imuran/day
100mg Tramadol/day for abdominal pain (as needed)
1 Fioricet ever 4 hrs as needed for severe migraines


LoLoinNJ
Regular Member


Date Joined Jun 2007
Total Posts : 57
   Posted 10/9/2007 3:28 PM (GMT -7)   
I got a phone call from Michelle also. She is actually from a 3rd party company hired to arrange the meeting. She mentioned the name of the pharmaceutical company but I forget now. I said I would go. If it's legit, and I can offer my insight/experiences, I'm up for it!
33 year old stay at home mom to a fantastic 3 yr old boy : )
diagnosed in 1999, Flaring since early June
PREscriptIONS
asacol 4 - 3x's a day, rowasa enema - every other night, 5 mg prednisone (tapering from 60mg)OTHER SUPPLEMENTS
culturelle, acidophilus, digestive advantage, omega 3 fish oil, fibercon


SnookieBow
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 10/9/2007 5:31 PM (GMT -7)   
I wonder if this is related.  I received a check for$20.00 for participation in a Ulcerative Colitis research project.   From a Tom Crumlish- The Brandware Group, Inc.
 
Anyone else get a check?  I am going to research to make sure it is legitimate. 
 
On the philadelphia trip, how do we know if that is legitimate? 
 
Snookiebow
 
 
First flare:  August 2006, diagnosed September 2006-
Dipentum and Entocort September and October 2006- now trying Asacol
Garden Of Life:  Primal Defense, Digestive Enzyme, and FYI
Glutamine Caps, DHEA, , vitamin E, Capryl, Turmeric & Bromelain
Omega 3- Fish oil, Biotin, Cal-Gel
Vitamin E enema & occasional Rowasa enema
AloeVera juice


AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 10/9/2007 5:48 PM (GMT -7)   
What are the chances that if you cash the check, whoever has issued it can access your checking account? I would be very careful.
AlabamaBabs
Pancolitis diagnosed 5/07 
started on 2 Lialda/day and increased to 4 Lialda/day since 8/01/07
40 mg. Prednisone for two weeks starting 9/16/07 and tapering by 5mg per week started 9/28/07
Activia yogurt; multi-vitamin; extra calcium supplement; omega 3's


jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1611
   Posted 10/9/2007 8:10 PM (GMT -7)   
The Brandware Group, Inc. is a legit company. Check out there website
www.brandwaregroup.com
I just googled them and they are a real marketing research group in Atlanta
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
GNC Probiotic
Forvia
calcium 
Currently in Remission


LoLoinNJ
Regular Member


Date Joined Jun 2007
Total Posts : 57
   Posted 10/10/2007 3:44 AM (GMT -7)   
i also got a check from Brandware yesterday but for only $5 sad i just went on their website and saw the companies they work with and one of the pharmaceutical names was Shire, which is the name Michelle mentioned. When I went on the Shire website, it turns out they make LIALDA!
33 year old stay at home mom to a fantastic 3 yr old boy : )
diagnosed in 1999, Flared from June to Sept.
PREscriptIONS
asacol 3 - 3x's a day, rowasa - 1X every other week. OTHER SUPPLEMENTS
multivitamin, omega 3 fish oil, fibercon


Annie76
Regular Member


Date Joined Jul 2007
Total Posts : 66
   Posted 10/10/2007 9:10 AM (GMT -7)   
I recieved this same call earlier in the week.  The company is Shire that makes Lialda.  At the time I took the online survey, I was on Lialda but it didn't work for me.  I assumed all of the people they wanted at this meeting would be those who are actually on Lialda.  She said she would call Shire and see if they still wanted me.  She called back 2 days later and said they indeed wanted me to come.  Right now they are deciding between the first 2 weekends in Nov.  She is to let us know by Friday which weekend they have chosen.  She said they are paying for the plane fare, ground transportation, Friday night dinner, motel, and Saturday meals.  We would be meeting on Sat. until about 2:00 and then go home.  That's as much as I know.    

left-sided colitis diagnosed after 3rd pregnancy 11 years ago: was in remission for 5 years
Current UC Meds:  12 Asacol per day
                          1 Rowasa enema at night
 
Other Meds:  Lipitor, Multi-vitamin, asadophilus, cinnamon capsules
 
In a flare since the middle of April


SnookieBow
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 10/10/2007 7:27 PM (GMT -7)   
I talked to Michelle today also and shared my concerns.  With all the scams people need to be careful and she understood.  She is going to have someone else who works with Shire and another company who is involved call me tomorrow morning. 
I also expressed my concerns about food.  She assured me that our diets would be taken into consideration. 
She also said we would be given a form, I think it is a 1099 for taxes. 
They will send us discussion questions so we can be prepared. 
My last question was about the flight.  My first and only flight we had air conditioning problems.  The connecting flight had propellar problems and then we ended all with bags loosing our cookies flying over the ocean to the Bahamas!  Not a good experience. 
And flying by myself! Changing planes. Kinda scary!   
I also look at this as an opportunity of a lifetime.  Maybe we can make a difference in our lives and  the lives of others with UC. 
 
And I have never used Lialda or Pentasa.  Currently trying Asacol, but still have some blood in my formed stool. 
 
Snookiebow 
 
 


First flare:  August 2006, diagnosed September 2006-
Dipentum and Entocort September and October 2006- now trying Asacol
Garden Of Life:  Primal Defense, Digestive Enzyme, and FYI
Glutamine Caps, DHEA, , vitamin E, Capryl, Turmeric & Bromelain
Omega 3- Fish oil, Biotin, Cal-Gel
Vitamin E enema & occasional Rowasa enema
AloeVera juice


SnookieBow
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 10/11/2007 7:49 PM (GMT -7)   
 I made the mistake telling my mom about this trip and she is worried.  She wants to give me $250 to not go. 
She really doesn't understand.  Yes, I am nervous about flying, but chances are everything will be fine. 
Here I am 40 years old, she's 77 and she's telling me "Now you listen to your mother."  AUGH!  I told her I'm making the decision. 
I love her, but she is really becoming a pain in the butt. 
She has had 8 back surgeries, filling fractured vertebra with cement. Dad died just over a year ago, but she had been living by herself since 2003. Dad in a nursing home.  Well, I got her in a habit of calling me every night after 9pm. when she has free cell phone minutes and now it is getting unbearable and annoying.  I need to get her to stop, but how. 
I haven't discussed the trip with my husband, but I'm sure he will support me either way.
 
Thanks for listening.
 
Snookiebow
 
 
First flare:  August 2006, diagnosed September 2006-
Dipentum and Entocort September and October 2006- now trying Asacol
Garden Of Life:  Primal Defense, Digestive Enzyme, and FYI
Glutamine Caps, DHEA, , vitamin E, Capryl, Turmeric & Bromelain
Omega 3- Fish oil, Biotin, Cal-Gel
Vitamin E enema & occasional Rowasa enema
AloeVera juice


momhatesuc
Regular Member


Date Joined Sep 2006
Total Posts : 78
   Posted 10/12/2007 10:31 AM (GMT -7)   
I'm glad to know that others are planning on going.  I'm looking forward to giving my insight and possibly helping with research for UC.  Plus as a stay home mom I'm excited about a little adventure!  Unfortunately for me I grew up in Philly and now live only 3 hours away and drive there all the time.  Not much of an adventure, but if I get to fly it will probably only take 15 minutes!  Looking forward to meeting many of you soon.

Leslie, 29~ left-sided UC diagnosed in 1999
9 asacol x day
nightly rowasa (as needed)
prenatal vitamins


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 10/12/2007 8:58 PM (GMT -7)   
I took that survey too. Today I got the check in the mail for $5. Had I not read this post, I really would have wondered at this piece of mail from Brandware.

I hope all goes well in Phili!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Culturelle, Biotin, Folic Acid, Forvia, Calcium, and B12
 
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 10/13/2007 5:16 AM (GMT -7)   
:( I haven't got anything yet and I did that survey. I'm glad you are were wary of this and took actions to prove that it's legit. Have fun to whoever is going and let us know how it goes.
 @--->--SHERRY--<---@
Left sided Uc -'92 - Colazal, Canasa, 6mp, Prilosec, Biotin, Forvia
Allergies - Singulair, Allegra, Astelin(got the script - just haven't tried it yet!)
Secondary Reynauds Syndrome - '04 - Norvasc
Fibromyalgia - '06 
PLEASE HELP HEALINGWELL CONTINUE TO HELP OTHERS BY CLICKING HERE: DONATE
@--->--Moderator for Allergies/Asthma and Co-moderator for UC--<---@
 
 
 
 

 
 


UCreallySUCKS
Regular Member


Date Joined May 2006
Total Posts : 260
   Posted 10/13/2007 5:26 AM (GMT -7)   
I received an e-mail from Michelle yesterday regarding Philadelphia.  I'll copy and paste incase somebody didn't receive it, that will be going.  And it did come with phone numbers/addresses to contact her.  I wasn't sure if I should post them or not.  If you didn't receive this e-mail but you received the call and want their phone #'s and addresses, just let me know.
 

Thank you for your patience as we confirm a date for the Shire Pharmaceuticals Ulcerative Colitis Patient Advisory Roundtable.  Based on the availability of the polled patients, we have confirmed that the meeting will be held on November 9-10, 2007.  The meeting will be held on Philadelphia, Pennsylvania, the venue is still to be determined.

 

For those of you that have indicated that you are available to attend the meeting on November 9-10, you will receive a formal invitation and meeting package within the next few weeks.  This package will include a Travel and Accommodations Form where you will have the opportunity to provide your preferred travel times and airline, as well as any dietary restrictions that you may have.  If you previously indicated that you are not available on November 9-10, and should become available, please let me know as we would greatly value your participation in the meeting.

 

If you should have any questions, please do not hesitate to call me.

 


---Nathan---  31 yr old male
Diagnosed May 2006 w/severe UC
Currently in mild/moderate flare
2 400mg Asacol 4X day
20 mg Prednisone
1 multivitamin/day
2 grams calcium/day
75mg Imuran/day
100mg Tramadol/day for abdominal pain (as needed)
1 Fioricet ever 4 hrs as needed for severe migraines


SnookieBow
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 10/13/2007 9:10 AM (GMT -7)   
Michelle from the meeting company forwarded my name and concerns on the Shire.  I received this e-mail from Shire so I am feeling more comfortable with this adventure. 
 

Dear Darlene,

My name is Robyn Karlstadt and I am the am the Scientific Lead for Shire's Gastroenterology Business Unit. I am a Gastroenterologist dedicated to research in this field.  We have hired Return on Focus and American Meetings, Inc. to coordinate a patient roundtable event in Philadelphia, PA in early November.

I understand that you and some others may have concerns about this project. As a company which is committed to patients and physicians in Gastroenterology, we are genuinely interested in engaging with a small group to gain more insight into the challenges and needs of UC patients. We would be pleased to have you attend this event. 

Please let me know if you have any other questions or concerns prior to this meeting. You can also find more information about our company at www.Shire.com.

Regards,

Robyn Karlstadt, MD

Vice President, Research & Development

Shire

725 Chesterbrook Blvd.Wayne, PA  19087

email and any files transmitted with it are confidential and be legally privileged and are intended solely for the use of the individual or entity to whom they are addressed.

Phone 484-595-8946

Fax 484-595-8660

rkarlstadt@shire.com

www.shire.com

 

 I also received an e-mail from Michelle about the flying.  I thought it may be helpful to those who normally don't fly to know the airline rules. 

"I understand your concerns about flying; I felt the same until I started a job where I had to fly almost monthly. Your first experience sounds awful.  Please know that I have been a meeting planner for over 5 years and have been flying all over the world and have very minimal issues when flying (knock on wood!).  I would recommend that you try to use carry on luggage only, as you will be staying at the hotel for only one night.  This will eliminate the chance that your bags are lost, as I find this to be the most common issue.  Regarding what you can carry on, PLEASE CLICK HERE to see the list of items that are prohibited.  You are limited to the size liquids that you can carry on, but you should be fine with a small amount of anything for one night.  As you will be flying from Omaha, you will need to have a connecting flight.  Please know that I will provide you with my cell phone number and\nyou can call me if you have any problems with the connecting flight. I can work\nto get you on another flight if any issues should arise.  I do not expect\nthat you will have any problems, but I will be there for you should anything come up.It appears that the November 9-10 date will\nbe the meeting date.  As you indicated that you would be available for this date, please expect a package in the mail with a formal invitation and registration form, as well as detailed meeting materials and information from Shire. I will be traveling out of the country for a meeting all next week, but if you should have any questions, I will check my email frequently and will get back to you within a few days.  If you have any urgent questions, my colleague,Todd Bludworth can assist you. You can reach Todd at todd@americanmeetings.com.   I  am looking forward to meeting you! Have a great day. Omaha, you will need to have a connecting flight.  Please know that I will provide you with my cell phone number and you can call me if you have any problems with the connecting flight. I can work to get you on another flight if any issues should arise.  I do not expect that you will have any problems, but I will be there for you should anything come up.

 It appears that the November 9-10 date will be the meeting date.  As you indicated that you would be available for this date, please expect a package in the mail with a formal invitation and registration form, as well as detailed meeting materials and information from Shire.  I will be traveling out of the country for a meeting all next week, but if you should have any questions, I will check my email frequently and will get back to you within a few days.  If you have any urgent questions, my colleague, Todd Bludworth can assist you.  You can reach Todd at todd@americanmeetings.com.

Snookiebow
www.shire.com.

 

I just got rid of the jibberish lines to make the post fit.



Post Edited By Moderator (Red_34) : 10/13/2007 12:25:08 PM (GMT-6)


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   Posted 10/13/2007 9:33 AM (GMT -7)   
I got a $5 check for completing a survey, but didn't get invited to Philadelphia.
23 years old
Diagnosed with UC March 2007
Current inflamation in the rectum
Asacol 4 tablets 3x/day
Rowasa (generic) - nightly
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; experimenting w/fiber supplements (Metamucil and Fiber Choice); Viactiv (Calcium and Vit. D) for Osteopenia; ground flaxseed


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5135
   Posted 10/13/2007 12:56 PM (GMT -7)   
Thanks to all for this info.! As a longtime UCer, I'm interested to read that a pharmaceutical wants direct input from UC patients. Generally what they've been after is feedback from gastros who conduct their clinical trials. Not the most objective way to get input-- because doctors do have a financial stake in all this, it must be said. I hope that somebody who attends this roundtable can bring up the recently reported issue of kidney complications from 5-ASA drugs, which have been discussed on this site by Beth75 & Red Plum. / Old Hat (nearly 30 yrs with left-sided UC; currently tapering Colazal after July flare in descending colon; remission near)

AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 10/13/2007 3:48 PM (GMT -7)   
Hey, I got a $20 check and am going to deposit it :) I wish I could go. Hopefully, they will do this again and maybe near Atllanta or so. My sincere thanks to all who researched this out and who are going for sharing about UC. It is interesting when I think about it how much I have learned from you all on this board, vs. the pharmaceutical company or my doctor!
AlabamaBabs
Pancolitis diagnosed 5/07 
started on 2 Lialda/day and increased to 4 Lialda/day since 8/01/07
40 mg. Prednisone for two weeks starting 9/16/07 and tapering by 5mg per week started 9/28/07
Activia yogurt; multi-vitamin; extra calcium supplement; omega 3's


SnookieBow
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 11/3/2007 7:46 PM (GMT -7)   
bump
UC First flare:  August 2006, diagnosed September 2006-
Dipentum and Entocort September and October 2006- now trying Asacol
Garden Of Life:  Primal Defense, Digestive Enzyme, and FYI
Glutamine Caps, DHEA,  vitamin E, Capryl, Turmeric & Bromelain
Omega 3- Fish oil, Biotin, Cal-Gel
Occasional  Vitamin E enema &  Rowasa enema
AloeVera juice


SnookieBow
Regular Member


Date Joined Mar 2007
Total Posts : 79
   Posted 11/3/2007 8:02 PM (GMT -7)   
Since we are getting closer to the Round Table Discussion is Philadelphia I thought I would bump this up and ask so who's all going?
I have decided it is a great opportunity and I'm going. I received my flight information. I am leaving Omaha to Chicago in the early afternoon. I am on United Airlines. Anyone else on this flight leaving Chicago at 1:10pm?

Snookiebow
UC First flare:  August 2006, diagnosed September 2006-
Dipentum and Entocort September and October 2006- now trying Asacol
Garden Of Life:  Primal Defense, Digestive Enzyme, and FYI
Glutamine Caps, DHEA,  vitamin E, Capryl, Turmeric & Bromelain
Omega 3- Fish oil, Biotin, Cal-Gel
Occasional  Vitamin E enema &  Rowasa enema
AloeVera juice


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   Posted 11/3/2007 8:28 PM (GMT -7)   
I'm not going (wasn't asked to go), but just wanted to wish you happy travels and definitely let us know how it turns out when you get back.
23 years old
Diagnosed with UC March 2007
Current inflamation in the rectum
Asacol 4 tablets 3x/day
Rowasa (generic) - every other night
Nature's Way Primadophilus Reuteri 1/day; Chewable multivitamin; Metamucil and Fiber Choice; Viactiv (Calcium and Vit. D) for Osteopenia; ground flaxseed


UCreallySUCKS
Regular Member


Date Joined May 2006
Total Posts : 260
   Posted 11/3/2007 10:30 PM (GMT -7)   
I'm going, and have the flight already scheduled.  I'll be leaving out of Orlando though. Lucky to get a non-stop flight to Philly.  If I find out soon enough details about what Shire is wanting to know, maybe I could post a few of the topics to pass along to this forum.  We could take some of your insights/questions along with us.
---Nathan---  31 yr old male
Diagnosed May 2006 w/severe UC (pancolitis)
Currently in mild/moderate flare
2 400mg Asacol 4X day
20 mg Prednisone
1 multivitamin/day
2 grams calcium/day
75mg Imuran/day
100mg Tramadol/day for abdominal pain (as needed)
1 Fioricet ever 4 hrs as needed for severe migraines


LoLoinNJ
Regular Member


Date Joined Jun 2007
Total Posts : 57
   Posted 11/4/2007 5:03 AM (GMT -7)   
I'm going! I live in Northern NJ so I'm renting a car. I'm really interested in the opportunity to hopefully make a difference. I'm also looking forward to meeting other HW members!
33 year old stay at home mom to a fantastic 3 yr old boy : )
diagnosed in 1999, Flared from June to Sept.
PREscriptIONS
asacol 3 - 3x's a day, rowasa - 1X every other week. OTHER SUPPLEMENTS
multivitamin, omega 3 fish oil, fibercon


momhatesuc
Regular Member


Date Joined Sep 2006
Total Posts : 78
   Posted 11/4/2007 9:47 AM (GMT -7)   
Snookiebow, I'm glad you have decided to go. I was hesitant at first but now am excited. I'm looking forward to meeting you all. As I said earlier I'm from Philadelphia and the hotel where it is being held is really nice. It seems strange to fly from DC when I drive there all the time. I can't believe how expensive it is! But I'm taking advantage of their offer. Are cheesesteaks out of the question for all us UCers ;) ?
Leslie, 29~ left-sided UC diagnosed in 1999
9 asacol x day
nightly rowasa (as needed)
prenatal vitamins

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