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Annabelle_H

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1 reviews

Review for Cure for IBD, Basking Ridge, NJ, USA

Rating: 5 stars  

Two years ago, I learned that my beautiful son was sick with Crohn's disease, a day that will remain etched indelibly in my mind. As soon as I got home from the hospital, the quest to understand, to learn began. Soon after, I discovered the terrible words: there was no cure, but it could be managed with powerful drugs with frightening side effects. I also learned that not everyone responded to these drugs and they would stop working for many people. Statistics such as 80% of patients would end up in surgery haunted me.

It was for me, unacceptable. There had to be something that would restore my son's health. Diving into the research I found out about a possible cure, a vaccine that'd boost my son's immune system to eradicate the bacteria (MAP) considered the likely cause of the disease, but it was necessary to raise funds for a diagnostic test to accompany human trials. Hope was born. Initially, I simply donated money. I doubted I could do much else. I'd never raised money for anything. I'd no idea how I could actually help. However, after I'd offered to learn about grant writing I received a kind answer from the founder, Amy Hermon-Taylor, suggesting that I write local Rotary and Lions clubs. I wrote to twenty of them, getting one reply back inviting me to give a presentation which I did. It went well, but that's all. Nothing remarkable happened. Donations didn't flood in as a result.
So it wasn't the presentation that lit my fire. It was the incredibly warm members of the cause, who offered their support. It didn't matter that I hadn't succeeded in bringing in money, I'd tried and that was what counted. Suddenly these people weren't simply names attached to a Facebook profile; they were parents like me with their sick kids or people themselves struggling with the disease. Their stories touched me deeply and I found myself not advocating simply for my son, but for all who were avidly following the funding progress. They gave me strength, and encouraged me as I ventured out to 'spread the word'. I made bracelets to sell, set up tables in front of grocery stores and open air markets distributing flyers and answering questions, plastered my car with bumper stickers, wore t-shirts to the gym with the slogan 'I want my son cured, not managed', hoping to pique people's interest. I visited the Foundation Center to learn about applying for grants, wrote letters asking for support and was invited to the headquarters of one grant maker. More often than not, I came back empty handed with my high hopes dashed. Yet I could not give up. Something propelled me forward. So, I swam a mile in Lake Tahoe, and organized a fun dog show. Still, I felt compelled to do more, to help so many of these kind people, clutching to hope. Finally, I took a great leap organizing a gala, which thankfully, was a success!
It's been a united effort, the fundraising goal nearly complete, but I'm not putting all my hope in one basket. I'll continue to support promising treatments. 'Cure for IBD', has provided me tools to continue down this highway raising funds for possible cures, moving us closer to the ultimate goal: ridding the world of Crohn's and Ulcerative Colitis.

Role:  General Member of the Public