Friday, April 19, 2013
Here is a Story about a young Girl by the name of Molly Roberts who is now a Freshman in High School here is HER STORY. When I was 11 years old my whole world changed. I experienced intense stomach pain, unbearable fatigue and weight loss. After a series of tests, I was surprisingly relieved when my doctors figured out what my problem was and prescribed medicine to make me feel better. I was diagnosed with Crohn’s Disease. Most people would think that the news would be devastating to a sixth grader who is barely old enough to understand. But those who know me best would say that it opened up my mind to new opportunities to make this world a better place. Crohn’s Disease has been a cloud with a huge silver lining. I do not mean to suggest that life with Crohn’s was not a major adjustment. For a child unable to swallow a Tylenol, taking eight and a half pills a day took some getting used to. I learned the hard way that certain foods such as nuts, popcorn and big salads give me unbearable stomach pain. If I choose to focus on the negative, I could tell you what it feels like to be anemic all the time, to go for blood tests every three months, to feel different from other kids my age, but that would be a waste of my time. So I will tell you about the positive instead: Crohn’s Disease has given me a unique perspective on what is important in life and a desire to help others who experience bumps in the road. I know how fortunate I am to live in New York City and to have access to the very best medical care. I am one of the lucky ones. By the fall of seventh grade, I was back to doing too much homework, singing, playing the guitar and making jewelry, a skill I picked up at Camp Vega in Fayette, Maine. I enjoyed making beaded bracelets on elastic cords that I wore in stacks on my wrist every day.Before I knew it, my friends from school and camp were asking me if they could buy my bracelets. I did not want to make a profit from my friends, but I was flattered by their responses to my designs. It made perfect sense to sell my jewelry and donate all of the profits to Crohn’s research. By donating my profits to research, I felt that maybe I could play some small part in the discovery of a cure, sooner rather than later. My doctor, Keith Benkov, thinks that there will be a cure for Crohn’s Disease in my lifetime. About a year and a half ago, I arranged a meeting with Dr. Benkov at Mount Sinai Hospital to get advice about where my contributions would be most meaningful. I was introduced to Dr. David Dunkin, a researcher at Mount Sinai who is making great progress in finding a cure for Crohn’s Disease by experimenting with mice in his lab. He discovered that a Chinese herb used to treat peanut allergies in children is also effective in reducing the symptoms of Crohn’s Disease in lab mice. Dr. Dunkin’s findings are very promising, but he desperately needs more funding. After our first meeting, I was convinced that my donations would be put to great use by contributing to his research, so I set up Molly’s Research Fund at Mount Sinai Hospital for that purpose. Since I started my jewelry business, I have had many great opportunities to raise money by selling my jewelry. I donate all of the profits to Molly’s Research Fund and to the Crohn’s and Colitis Foundation. I now sell bracelets, necklaces, rings, earrings and beaded bags. I have sold my bracelets at Letser’s NYC, at trunk shows, at charitable events for the Crohn’s and Colitis Foundation of America and online through my website at jewelrybymollyroberts.com. I am frequently contacted on Fridays by desperate shoppers in search of last-minute bat mitzvah and sweet sixteen gifts; fortunately, I am always fully stocked with a large collection. My most popular bracelets are my miniature, semi-precious beads with various charms. I am very excited that this year I will be receiving the Rising Star Award presented by the Crohn’s and Colitis Foundation at the Women of Distinction Luncheon on April 23. The award is in recognition of my efforts to find a cure for Crohn’s Disease. I feel so fortunate that I have been able to raise over $18,000 for Crohn’s Disease since I started selling jewelry just a year and a half ago. It seems that the more others learn about my charity, the more they are eager to help. So many people have already donated to the Crohn’s and Colitis Foundation as a way of honoring and supporting me. Some have offered their personal connections to publicize my efforts; others have hosted trunk shows in their homes to promote my business. Although I would never wish Crohn’s Disease on anyone I can honestly say that in my life, it has been as much a positive force as a negative one. It is easy to go through life without thinking about how we can improve the world around us; that is a path I might have chosen if I had not experienced Crohn’s Disease. The illness does not make me who I am, but it has certainly opened my eyes to what I can do for others. Molly Roberts is a freshman at the Horace Mann School in Riverdale, N.Y. Come meet Molly and have an opportunity to buy one of her bracelets at CCFA’s NYC Women of Distinction Luncheon and help the 1 in 200 Americans with inflammatory bowel disease. Get more information here.
Thursday, April 18, 2013
Here is the April Newsletter Issue from CCFA. Letter from CCFA President Rick Geswell, Great news! Our Escape the Stall awareness campaign featuring Amy Brenneman, acclaimed actress and proud CCFA supporter, won the Gold DTC National Advertising Award for Best Disease Education for TV/Print! Talking about IBD is not easy for anyone, but winning this award is a reflection of how far we've come in creating a dialogue about IBD. I am incredibly grateful to Draftfcb, a renowned advertising agency for their outstanding pro-bono work. I know we'll continue to raise public awareness about IBD and the 1.4 million Americans it affects. If you haven't seen the campaign yet, take a look! The Next Steps in Understanding IBD IBD Researcher Every five years, we outline our progress in IBD research and set future goals in our "Challenges in IBD Research" report. Since our last report in 2008, we've identified over 163 genes for both Crohn's disease and ulcerative colitis and have initiated large studies to predict treatment outcomes and risks in pediatric IBD patients. We have also improved the tools for the identification of potentially crucial bacteria. These are only a few of our accomplishments... and there is still so much to be done! Read "Challenges in IBD Research" to find out more about our research agenda and how we'll continue to lead the effort to better understand IBD. read more College Student Helps CCFA Launch IBD Education Program Abby Ever since Abby Searfoss was diagnosed with Crohn’s disease as a high school senior, she has played an integral role in youth advocacy for people with IBD. Now a junior at the University of Connecticut, Abby conducted the first ever educational "Program in a Box" on campus this week. We asked Abby to talk with us about this new program, her advocacy work, and how she manages her IBD while in college. read more Clinical Trials CCFA provides a comprehensive database of studies, clinical trials, and other research on Crohn's disease and ulcerative colitis. Some of the clinical trials recently added to our list include: A brief communication of treatment risks survey being conducted by National Analysts Worldwide The pregnancy and neonatal outcomes in women with IBD study by the University of California San Francisco and 30 other sites The allogeneic hematopoietic cell transplantation study by the Fred Hutchinson Cancer Research Center By participating in a medical study or clinical trial, you can have a more active role in your own health care, gain access to new research treatments before they become widely available, and help others by contributing to medical research. Deciding whether you should participate in a study or clinical trial is an important personal decision, best made with a full understanding of the process of drug development and your specific role.