Young Teen Sells Jewelry For Those In Need

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.

What is Next in IBD Research

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.

Take the Challenge for Timmy Here is his Story

Here is an inspirational story about a little boy by the name of Timmy who was diagnose with Crohn's disease at the tender age of 5 years old.So PLEASE take the CHALLENGE on behalf of Timmy and the millions of others diagnose with Crohn's disease and Ulcerative Colitis. Timmy was diagnosed with Crohn’s disease in 2009 at the age of five. His diagnosis was not an easy one—he started having random fevers, stomach aches, and joint pain at the age of three. Sometimes his joint pain was so severe he could not run or play. Timmy’s growth was also affected. After a long road of hospital visits and tests, Timmy was diagnosed with Crohn’s disease. In the three years since his diagnosis, he has been hospitalized multiple times, had two major surgeries (removing two feet of his small intestine), and has tried countless medications. Timmy does his best to be like other eight-year-olds—he loves Legos and riding his bike when he can. But he and his family live with uncertainty every day, never knowing when there will be another trip to the hospital. In spite of it all, they remain hopeful that his disease will come under control and there will someday be cures. Timmy is the national honored hero for Team Challenge, CCFA’s endurance training and fundraising program. You can help—join Team Challenge and offer kids like Timmy a future free from Crohn’s and colitis when you join Team Challenge here. Team Challenge offers a custom weekly training program to get you ready for a destination race while raising vital funds for CCFA’s research, education, and support programs. Information meetings are taking place right now: we’re training for upcoming races in Virginia, Chicago, Napa, and Hawaii! When you join Team Challenge, you’ll not only find new strength inside yourself, but you’ll also offer kids like Timmy a future free from Crohn’s and colitis. Find your Team today!” PLEASE visit www.ccfa.org

Take the Challenge for Timmy

In the March 2013 issue of CCFA we are sharing our stories and taking our FIGHT to Congress. Take the Challenge for Timmy Timmy, the 'honored hero' for Team Challenge Timmy was diagnosed with Crohn's disease at the age of five. It hasn't been easy. Since his diagnosis, Timmy has done his best to be like other kids – he loves Legos and riding his bike when he can – but he and his family live with uncertainty every day, never knowing when there will be another trip to the hospital. In spite of it all, they remain hopeful for a cure someday. Timmy is the national honored hero for Team Challenge, CCFA's endurance training and fundraising program. You can help – when you join Team Challenge, you'll bring kids like Timmy a step closer to a future free from Crohn's and colitis. Read Timmy's story and find out how you can help. read more Questions about nutrition and IBD? We can help. One of the most popular topics among IBD patients is nutrition. What should you be eating? What about social gatherings and holidays? The free webcast "Food for Thought: Nutrition & IBD" (Wednesday April 10, 1:00-2:15pm ET) will provide up-to-date information on the complex relationship between nutrition and IBD management, and empower patients to make healthy choices to ensure adequate nutrition and wellness throughout the year. It will be co-presented by Millie Long, MD and Lisa Cimperman, RD. Pediatric IBD specialist Joel Rosh, MD will also participate in the Q&A. Learn more and register today! read more Our Advocacy Toolkit is now available! Washington DC CCFA is excited to announce the launch of our Advocacy Toolkit, a must-read for anyone looking to make their voice heard in Congress. The Toolkit contains important information about advocating for legislative action for IBD patients and their families, as well as helpful resources to guide participation. Do you have just a few minutes to make a difference or do you have more time on your hands? There is something for everyone! Raising awareness about Crohn's disease and ulcerative colitis is as easy as writing a letter or making a phone call to share your story. If you're a patient, a family member, an advocate or just interested in supporting the rights of IBD patients, get started here! http://www.ccfa.org

In Memory of CCFA Co-Founder Suzanne Rosenthal Story

In the February Issue of CCFA News Letter we shared with you about CCFA'S Co-Founder Suzanne Rosenthal passing well her is Her full Story. In Memory of Suzanne Rosenthal It is with a heavy heart that we share the very sad news of our co-founder Suzanne Rosenthal's passing. Suzanne was a fearless, determined and courageous woman who turned her diagnosis of Crohn's disease in 1955 into a legacy that has gone onto to help hundreds of thousands of people over the years. She dedicated her life to spreading awareness about Crohn's disease and ulcerative colitis, supporting and educating patients and funding research to find cures. In 1967, along with her husband, Irwin M. Rosenthal, William D. and Shelby Modell, and Henry D. Janowitz, MD, she founded the National Foundation of Ileitis and Colitis, now known as the Crohn's & Colitis Foundation of America. Suzanne held many key volunteer positions at CCFA. She was a former president of the Greater New York Chapter and served as National Chairperson of the Board from 1987 to 1991. She served as Chairperson Emeritus of CCFA's Government Affairs Task Force, and was a champion in all advocacy efforts of the foundation. Suzanne received CCFA's distinguished Public Policy Pioneer Award for her tireless advocacy efforts on behalf of IBD patients everywhere. The award was presented at CCFA's First National IBD Advocacy Conference, held in Washington, D.C. in June 2003. Suzanne traveled throughout the country to visit many of CCFA's chapters and to help establish new chapters. She made numerous media appearances to raise public awareness of these inflammatory bowel diseases (IBD). During her tenure as President of the Greater New York Chapter, she initiated the support group model that has since been implemented as CCFA's national network of support groups. Suzanne was also the Founder and past President of the Digestive Disease National Coalition (DDNC). The DDNC comprises more than 32 lay groups and professional societies, representing the research and healthcare legislative interests of people who suffer from digestive disorders. In addition, she was an active leader in many digestive disease-related health forums and committees, holding the following positions: member, Advisory Council, National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK), National Institutes of Health (NIH); chairman, Workgroup on Education of Public and Patients and Supporting Resources of the National Commission on Digestive Diseases; and member, Advisory Committee, and current member, Executive Committee of the National Digestive Disease Information Clearinghouse. There are no words to clearly express our gratitude to Suzanne and all that she has done for the 1.4 million people who suffer from these diseases. Her legacy will live on and we will not stop until we find cures. She will be greatly missed. We extend our deepest sympathy to Suzanne's family, including her husband Irwin, daughters Karen Rosenthal and Robin Mehler, son-in-law David Mehler, grandchildren Jenna, Jack and Abby Belle, brother Donald Sigman and sister-in-law Myrna. **** A Special Shiva Will Be Hosted by Crohn's & Colitis Foundation of America in honor of their co-founder, Suzanne Rita Rosenthal 1930 Broadway between 64th and 65th Streets, 3rd floor Lounge Thursday 4:30 pm-9:00 pm

A Great Legacy

In the February CCFA News Letter it is with GREAT sadness that we Remember and Celebrate a lost in our family CCFA Co-Founder Suzanne Rosenthal. It is with a heavy heart that we share the sad news of our co-founder Suzanne Rosenthal's passing. Suzanne was a fearless, determined and courageous woman who turned her diagnosis of Crohn's disease in 1955 into a legacy that has gone on to benefit hundreds of thousands of people over the years. As a patient, volunteer, and activist, Suzanne was a tireless pioneer for patients living with IBD and other digestive diseases. She dedicated her life to helping other patients, and she is personally responsible for the creation of the various CCFA chapters nationwide. No words can truly express our gratitude to Suzanne. We will proudly carry on her vision of raising awareness and finding cures. I invite you to read more about Suzanne's legacy here. Thank you, Richard J. Geswell President Applications to Camp Oasis are now available! CCFA Camp Oasis Logo Dealing with IBD as a child is challenging. That's why CCFA established Camp Oasis. This co-ed residential camp provides a safe and supportive community for kids coping with growing up with IBD. At 12 Camp Oasis locations around the country, kids can try new sports, arts and activities and create friendships with people who truly understand them. And they'll always be taken care of – our volunteer health care professionals are available for 24-hour care. Applications are now open for summer 2013 – new campers are encouraged to apply! read more Walk With Us Take Steps walkers Feel a true sense of community when you join a Take Steps fundraising walk. Take Steps is not just a walk, but a celebration including music, food, and activities for the whole family. Our participants walk each spring and fall in over 150 communities nationwide, and our 2013 events are just around the corner! You can participate as an individual, or double your fun and walk with friends, family, or co-workers as a team! In the past five years, Take Steps walkers succeeded in bringing together over 100,000 people and have raised close to $40 million to help further CCFA's mission. Learn more at cctakesteps.org. read more Be Determined! Are you determined? Visit CCFA's I'll Be Determined site to see new interactive features to help you take charge of your IBD. If you've been recently diagnosed or know someone who has, the recently added "Newly Diagnosed" section is an excellent resource for preparing yourself for potential lifestyle changes. Other new features on the site include additional content in the Info Center, access to GI Buddy, our disease management tracker, and a redesigned layout! From treatment options to advice about how to deal with potential complications to nutrition, I'll Be Determined offers tools and resources, the perspectives of IBD patients and experts, and a chance to connect with people like you – with plenty of quizzes, games and videos along the way. Join the movement today, and start taking charge of IBD!

Her Story: Amy Brenneman

Did you know that Actress of the Hit ABC Television Show Private Practice Amy Brenneman was diagnose with Ulcerative Colitis here is her Story about the FIGHT against IBD and Amy's Awareness Campaign. We are delighted about the launch of our national awareness campaign featuring acclaimed actress Amy Brenneman. Nearly 1 in 200 Americans have IBD, yet these diseases are rarely discussed. CCFA is working hard to change that. This campaign is designed to start the conversation and raise awareness to help those suffering from IBD, but we need your help.

Her Story: Amy Brenneman Here are a few things I have done in my life: Ran a 5:22 mile. Climbed to 19,000 feet in the Himalayas. Went on stage with Bell’s palsy. Played St. Joan while I had strep throat. Worked until two weeks before I delivered Charlotte. Went back to work two weeks after I delivered Charlotte. Played Robert DeNiro’s love interest and lived to tell the tale. Played Sylvester Stallone’s love interest and lived to tell the tale. Survived five fertility treatments. Survived two miscarriages. Survived three generations of familial insanity. Survived ulcerative colitis. It started subtly with cramping. Then urgency. Rushing to the restroom. Weight loss. Hair loss. Visits to a homeopath, naturopath, nutritionist, acupuncturist, and massage therapist. Countless medications and ultimately surgery. Years ago, my doctor told me there was a surgical solution, but I thought, I will never do that. But surgery ended up being what healed me. I'm so grateful to Western medicine. And while I have found a way past my ulcerative colitis, there are so many who still suffer. That's why I'm an active supporter of the CCFA. They are helping people understand these conditions, building wider awareness and are tirelessly are working towards a cure. Everyone with IBD has a story to tell. This is mine. Now that Amy is feeling healthy, she is focusing on her career and her family. By day, she is an accomplished actress. By night, she is wife and mother. Married for 17 years to director Brad Silberling, she is mother to Charlotte, 11 and Bodhi, 7. Join Amy and support the Crohn’s & Colitis Foundation of America with these quick, easy ways: • Join a Take Steps Walk in your area. • Give a gift in honor of the 1.4 million Americans with Inflammatory Bowel Diseases. • Sign up for CCFA's monthly e-newsletter. • Register to take a survey at CCFA Partners and help other IBD patients. • Use #EscapeTheStall with a link to www.escapethestall.com on your social networks. We want to thank the team at Draftfcb for their efforts in helping us develop this awareness campaign and for donating their talents pro bono. Your dedication is greatly appreciated. Special thanks to Amy Brenneman and her team for lending their support. Amy Brenneman is an actress, writer, and producer. Her acting credits include Judging Amy, The Jane Austen Book Club and Private Practice. Learn more about her at: http://theamybrenneman.com/.