ibdcure.org | ibdsc | bnews | Newsletter Spring, 2000

ibdcure.org > breaking news > newsletter, spring 2000:

Spring, 2000 • Volume 1, Issue 1 • Web Version
IBD Stamp Campaign National Report

===========
In this issue:
===========

á Website Launch á Extension Granted! á Local Activism á Special Thanks & Important Dates to Remember

Note from the editor: First, I'd like to welcome everyone to the very first issue of IBDNR. This is the most informative and up-to-date literature on the Inflammatory Bowel Disease Stamp Campaign. I hope you have a pleasant time reading it, and please, share it with all of your friends and family. Thanks to all of you for helping this campaign become a reality!

-------------------------------
1. *Website Launch*
-------------------------------
Yes! It's-"almost"-here... The temporary, and what I call "preview" site of the IBD Campaign is here: http://www.geocities.com/ibdcure
You can access the site at any time, however, it is in it's beginning stages because:
-In the Fall of 2000, a private domain website, http://www.ibdcure.org will be launched to mark the official and national "kick-off" of the IBD Campaign
-Features of the new site will include:
1. Instant Action Center-enabling practically any single human to sign on to the proposal in seconds!
2. Printable/Downloadable support forms which can be used practically anywhere, anytime.
3. Downloadable business card to spread the word of the campaign-and to give to people who are interested in helping with the project.
4. A contact your local media page to raise awareness of the project, and urge newscasts to cover the campaign.
5. An action printout page to send to the Postal Committee as soon as the proposal is submitted-we wouldn't want to bombard them before they have the whole "sha-bang."
6. A contact your local representative page which will enable people to contact their local representative through through e-mail, urging them to support future legislation.
7. A page of bios from people with Crohn's disease and ulcerative colitis (IBD).
...But for now, please visit http://www.geocities.com/ibdcure -as it is the only site up now, and the official site is "almost" here.
As you can see the website has, and will have, much significance and impact on the project...in order for it have a tremendous impact, the word need to get out... if you or anyone you know would like to help with the site or the project-refer them immediately. Be sure to check back frequently for additions and updates such as this, because they will be posted!

--------------------------------
2. Extension Granted!
--------------------------------
It's been quite an experience starting a campaign such as this, and I must say that I wouldn't be anywhere without the emphatically optimistic response to every aspect of this project without all of your help. I would like to announce that the campaign for signatures has been extended indefinitely through the summer. If you posses the forms, and have a "send-back" date-please do not send them back, unless your are absolutely finished. If you need more sheets, they will be available for print-out and download by pdf in a short while-please contact me with any questions you might have.

----------------------------
3. Local Activism
----------------------------
It got to the serious point just 4 years ago-when I was properly diagnosed with Crohn's disease. After 12 years of misdiagnoses, I was finally able to look at my situation in a "real" sense, simply because I was finally being treated for what was really taking over my life...
An intense surgery followed diagnoses, considering I was unable to move out of bed before my first hospitalization, and then, I was just under 50 pounds at the age of 12 1/2. The next two years I was haggled with my ever-present, acute situation of apathous ulcers associated with Crohn's. Around my 3rd year of diagnoses, I was enrolled in a trial for an ancient drug called "Thalidomide," which was unsuccessfully used in the 50's for women who were pregnant. For eight months, my sores were miraculously killed, and I was completely sore-free. Since then, other complications have caused me to stop the drug, but future plans include trying it with lower dosage to avoid side effects.
This past January I successfully started the IBD Stamp Campaign. Now, four months later, the project is at a lever which was unforeseen by me, my assistants, and even my family.
But, there is one place which is currently playing a crucial role in the campaign which deserves recognition. Robert-Wood Johnson University Hospital in New Brunswick, NJ has taken a lead role in the project in so many ways-and, I cannot thank them enough for doing this, but making me healthier than I've been in my entire life. A couple people to thank: Mary Jane in adolescents for working like a "nut" to get people to support the project. All of the nurses in adolescents, for standing behind the project every step to date, and making every stay at the hospital an uplifting one. Kathy Soriano and public relations for the approval of the ceremony next fall, it's going to be a fabulous event...Nadine Roberts from Child Life, simply because she gave me tons of ideas and inspiration when I was just in two weeks ago-and now, Child Life is the official headquarters at Robert-Wood for all project-related "stuff." I cannot thank Nadine and the rest Child Life enough. Finally, I'd like to thank my gastro doctors: Dr. Strauss, Dr. Koniaris, and Dr. Rosenthal for the support and help with the project this far, but most importantly, keeping my Crohn's in "check," and enabling me to live a free life.

--------------------------------------------
4. Special Thanks & Important Dates
--------------------------------------------
In addition to everyone at Robert-Wood Johnson, I'd like to personally thank: Congressman Frank Pallone Jr. & Nancy Fatemi-both from district 6, NJ for encouraging me more than any other legislator in NJ; David Oroshnik-Cisco Systems for involving the internet powerhouse in the project; Donna Riggi- Lucent Technologies for involving the communications giant in the campaign; Larita Smargiassi- Clayton Meadows & Rosemarie Golobomos-Crohn's and Colitis Foundation for helping as well; Patricia Downs for the awesome contacts and advice; and everyone else who has been assisting this project to date, thank you.
A quick timeline to keep in mind: June 2000-New website launch; Summer 2000-(hopefully)- a changeover in website language from traditional html to "Flash."; October 2000-A ceremony at Robert-Wood Johnson for the introduction of legislation, and the continuation of the IBD Campaign!***RWJ has just approved the cermony-6/6/00, thanks Kathy & Laura (pr) so much! ; Somewhere in between-positive media coverage on the campaign...if you, or anyone you know has information or "connections" to any media sources, please contact them and let me know. ***Media coverage is in process with Rick Malwitz from the Home News Triune-check back soon for the date announcement of our very first media coverage of the campaign!***
-Thank you all for reading the first edition of the IBDNR.-

"A cure will finally be found once every stranger is aware of both Crohn's and Colitis." -Gideon Sofer

*****BE SURE TO TAKE ACTION BEFORE LEAVING OUR WEBSITE!*****

Who Are We? | IBD Everything | IBD Action Center | Breaking News | Events | Advocacy | My Story | Inspiration | Special Recognition | Links | Archives | Contact Us | Site Map | Home