• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

My campaign page for Propel

A

asadmom

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asadmom

Just curious if anyone has any feedback on how we can run this campaign more effectively?

🕊 Is Propel's position (bottom up, grassroots efforts) clear?
🕊 How to differentiate Propel from other huge IBD organizations so people know Propel's run all by volunteers and the overhead is just IT to keep the website up and running?
🕊What is holding back a patient from donating (other than financial burden)?

🌠There will be an update on the researchers on this collaboration soon. Stay tuned!
 
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asadmom

🌠 Propel update:

🏆 🏆 🏆 MEET MEMBERS OF OUR ROADMAP RESEARCH TEAM!

Dr. Mark Silverberg is the director of the Toronto Immune and Digestive Health Center and is a professor at the Department of Medicine at the University of Toronto. He leads a clinical research program that focuses on the causes of IBD, the development of tools to improve the management of IBD patients, and the development of novel IBD therapies. He has contributed to the discovery of genes related to IBD as well as being a major contributor to the field of classification of IBD.

Dr. Séverine Vermeire is affiliated with the Gastroenterology Department of the University Hospitals in Leuven, Belgium, and is also a professor of medicine at the Catholic University of Belgium. Her work has focused on the genetics and pharmacogenetics of IBD, on the role of the microbiome in IBD, and on aspects related to the immunogenicity of biological therapies.

Dr. Bram Verstockt is a gastroenterologist holding positions as a clinician and researcher in both the Department of Gastroenterology and Hepatology and the Department of Chronic Diseases and Metabolism at the University Hospitals in Leuven, Belgium. He is interested in translational research focusing primarily on the development of predictive and prognostic markers as part of a precision approach, and also utilizes mult-omics as a tool.
 
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asadmom

Our Roadmap to a Cure for Crohn's campaign is underway! This initiative arose from the realization that, although there has been a lot of Crohn's disease research over the years, what has been lacking is a coordinated approach to tie all the findings together.

Some studies have been repetitive, others have not resulted in needed follow-up, and quite a few have focused on aspects of Crohn's disease or Crohn's medications unrelated to what we consider the most important goal of all:

🌠SAFER, MORE EFFECTIVE TREATMENTS AND A CURE!

In our conversations with researchers and clinicians over the past several years, we have been repeatedly told that true progress toward a cure is only going to come from the ground up – our patient and caregiver community. In response, Propel a Cure has launched our Roadmap to a Cure for Crohn's.

This is a bold, ground-breaking initiative that has never been attempted. We are a small organization staffed solely by volunteers who frequently dip into our personal funds to cover our minimal overhead costs. But we strongly feel that if we don't try, it will never happen.

To accomplish this crucial objective, Propel a Cure is tapping into our strong connections within the scientific community and is in the process of recruiting a team of highly-renowned inflammatory bowel disease (IBD) specialists. This team will be international in scope and will be drawn from across disciplines.

Their mission will be to:
  1. Systematize what we know about Crohn's disease across fields like genetics, immunology, the microbiome, and more
  2. Identify what is missing, along with barriers and challenges
  3. Develop a detailed research plan to CURE Crohn's!

We at Propel a Cure passionately believe in this project, but we can't do it alone. We need $50,000 (raised > $20,000 so far!) in seed money to help launch our research team into action as quickly as possible and are trying to do so by September 30th. Please consider donating or, even better, sign up as a campaign team member.

To donate or learn more, visit:

ROADMAPTOACURE.ORG

Please join us and help spread the words... we need all of us to make this happen! 🕊
 
J

Jbungie

Everyone on these forums should create a profile. Its absolutely free, and takes about 2 minutes.

We can be the pioneers of crowdfunding disease treatment improvements if not cures!
 
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asadmom

There is a whisper on dual biologics for peds patients. :sick:

I am getting sick just by reading thru this thread 👉
https://twitter.com/i/web/status/1568158752183918592

This is not a good trend and we really need to put efforts in finding a cure to reverse this very dangerous trend. The trajectory we are on with Crohn's is gonna get worse if we don't do something - at least try. What will go wrong if we just try? Nothing. But we know everything will go wrong if we DON'T.

We have pages and pages of horrible stories on this forum. We've read them all and offered support. In addition to offering sympathies and best practices, why don't we also, in parallel, be proactive and pursue say a cure? Yes, this path is long and hard, we are all jaded and want to feel skeptical... I agree but we must let our fear and cynicism take the backseat for now.

Natalie is gonna speak tomorrow at 8pm ET. She is a CD patient herself, surgeries, drugs and whole 9 yards. If you could spare the time, please join and maybe she can change your mind on how the field is ready to do this.

Sept 10: 8-8:30pm ET https://tinyurl.com/2p8jxuf3
 
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