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Living with Thalassemia

Living with Thalassemia: Resources & Support
Italian Catholic Federation
▶ The ICF and thalassemia
▶ "Live to Give"
▶ ICF 2012 Pope Award

Resources and Support

Italian Catholic Federation

The Italian Catholic Federation and Thalassemia
by Carmen Kilcullen
Carmen Kilcullen
Carmen Kilcullen

The Italian Catholic Federation (ICF) is an organization started in 1924 with the purpose of bringing fallen-away Italian Catholics back to the Church. Today, with 12,100 members, the purpose remains the same, but people of other nationalities are welcome to join. In fact, many non-Italians on the rolls contribute greatly to the work of the ICF. The ICF has chapters in California, Nevada, Illinois, and now Arizona. The organization has an expansion program and hopes to open more branches in the future.

While members enjoy many social events, the emphasis is always on charitable and apostolic works. The ICF adopted Thalassemia as its national charity in 1981. The first donation was presented at the ICF National Convention in 1982. At that time, much of the research work for Thalassemia was conducted at Cedars Sinai Hospital in Los Angeles. Dr. Carol Hymen was the director of the program then. I recall speaking at length with Dr. Hymen about the program and was most impressed with her work. Since those early days, I have become acquainted with Laurice Levine, the Outreach Coordinator for Cooley’s at Children’s Hospital Oakland. We have shared many great moments together, and in fact, she has been present at the Valentine’s Gala Dinner held at my branch (#52, Healdsburg) for the past two years. This year, this event raised $5,000 for Thalassemia. We are planning this dinner again for 2011.

Thalassemia, a disease affecting people who live in Mediterranean regions or those regions of similar climate, struck a chord in our members. The ICF was quick to embrace this disorder as a charity and began to donate to a special fund set up for this purpose. The money accumulating in this fund is donated for research every year at the ICF National Convention. Over the past 22 years, the ICF has given over $1 million to the charity. The research and work on Thalassemia is now carried on at Children’s Hospital Oakland under the direction of Dr. Elliott Vichinsky. Members are invited to take tours of the Thalassemia facility and observe firsthand the care that patients receive.

To add to the annual donation for Thalassemia, individual branches such as ours also have fundraisers and special events. Members do toy drives or attend the annual Christmas party in Oakland and make it possible for patients to have a very special outing every year. It has been wonderful to see so many people give time and money to help patients with thalassemia live longer and better lives. In years past, patients rarely lived past teenage years, but many are now surviving into their forties and beyond. The work of the program has helped so many, but the kindness of others has enabled it to go far. The members of the ICF are to be congratulated for all that they do for Thalassemia.

The ICF also has a scholarship program for high school seniors entering college. Each year, money is given to students to help further their education. The ICF also donates money to the Providenza Seminary Fund to help with the education of seminarians. The Gifts of Love Fund aids developmentally handicapped people who need help of a specific nature. All the money for these charities is raised by ICF members at their various social events, and every penny collected is donated.

One cannot speak about the Thalassemia program at Children’s Hospital Oakland without again mentioning Outreach Coordinator Laurice Levine. ICF members have taken her to heart; she is the spark that encourages us and never ceases to amaze. Her own story is truly remarkable, and she inspires all when she attends ICF functions. She is always ready to come to any branch and speak about Cooley’s, so why don’t you invite her? I guarantee you won’t be disappointed.

Carmen Kilcullen
ICF Past Grand President
www.ICF.org


Northern California Comprehensive Thalassemia Center
UCSF Benioff Children's Hospital Oakland
747 52nd Street, Oakland CA 94609   •   Phone: (510) 428-3651   •   Fax: (510) 450-5647
© 2003-2012 Children's Hospital & Research Center Oakland
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