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You are welcome to print and otherwise distribute this pamphlet in support of increasing awareness of congenital hyperinsulinism, especially among medical personnel, in order to improve timely diagnosis.

If you would like to request some high quality, pre-printed pamphlets from us (CHI) please send your request to pamphlets@congenitalhi.org.  Please include your name and address as well as a description of who you would like to distribute the pamphlets to, a desired quantity and language (we also have these available in French and Spanish).

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The Bristol Hotel, where the conference will take place, would like a final count of registrants this week, so if you are planning to attend and haven’t yet registered, please send in your registration form to Randy Hart.

The Bristol Hotel is now sold out of rooms for the conference but we have reserved another block of rooms at the Sofia Hotel, which is a block away from the Bristol.  The room block at the Sofia will be held until June 6.  If you are interested in coming to the conference and reserving at the Sofia, you can call the Sofia Hotel at 800.826.0009 and let them know you are part of the CHI 2010 group. After June 6, the rates will revert back to the regular non-discounted rate.

This is a very busy time in San Diego and accommodations near the conference site will be difficult to find as we closer to the event.

We hope you can make it!

There will be Reports from Some of the Leading Treatment and Research Centers from Around the World and Lectures on: the History of HI Treatment and Research; Understanding the Scientific Underpinnings of the Condition, Why we Gather Data; Managing HI at Home and at School; Understanding Genetic Test Results; HI in Infancy, Toddlerhood, Childhood, the Teenager Years and Beyond; and Becoming a Part of HI Advocacy and Fundraising; as well as other topics.    We’ll also hear from some young adults who have lived their whole lives with the condition and have learned to successfully manage it on their own.  There will be many opportunities to ask questions and learn from leading world specialists, as well as time to get to know other HI families.

The faculty for the conference include Dr. Jean-Baptiste Arnoux from Necker Hospital in Paris, Dr Khalid Hussain and Dr. Dunia Ismail from Great Ormond Street Hospital in London, Dr.  Morey Haymond from Baylor College of Medicine, Dr. Paul Thornton from Cook Children’s Hospital in Fort Worth, Texas, Dr. Charles Stanley, Susan Becker, Amanda Lee, and Melanie Cohen from the Children’s Hospital of Philadelphia.

Send an email to Julie for any questions you may have:  jvraskin@aol.com.

Also find the registration form here.

We hope you can make it!

He’s particularly interested in discussing regional charity/support organizations.

Contact him at MHopkins@CongenitalHI.org

Here is an exerpt:

Mutations in ABCC8, KCNJ11, GLUD1, GCK, and HADHSC are known to be associated with FHI. About 45% of affected individuals have mutations in ABCC8 and about 5% havemutations in the coding region of KCNJ11. Approximately 5% of individuals have activating mutations in GLUD1. Rarely, affected individuals have activating mutations in GCK or inactivating mutations inHADHSC. About 40% of individuals with FHI do not have an identifiable mutation in any of the genes known to be associated with FHI. In the Ashkenazi Jewish population, two ABCC8 founder mutationsare responsible for about 90% of FHI. Another ABCC8 founder mutation, V187D, is present in the Finnish population. Mutation analysis for these two mutations and mutation scanning and sequence analysis of ABCC8, KCNJ11, GLUD1, and GCK are available on a clinical basis.

Find the full article here.

If the needle becomes detached from the syringe during use, it can become stuck in the insulin vial, push back into the syringe, or remain in the skin after an injection, the company said.

Consumers who have these products should stop using them and contact the company at 800-444-4011 for more information. Adverse reactions can be reported to the Food and Drug Administration at http://www.fda.gov/medwatch/report.htm.

HI patients taking insulin or octreotide injections.

Read the full article at Daily Finance.

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If CHOP doesn’t know your child, indicate whether you are willing to share your child’s name, diagnosis, and where they were treated.

Indicate whether CHOP can contact you about research studies you might be interested in.

http://www.endocrine-abstracts.org/ea/0016/ea0016pl5.htm