You can send a request to be added to the CHOP (Children’s Hospital of Philadelphia) mailing list for parents by e-mailing hyperinsulinism@email.chop.edu with a subject of “[Add me to the CHOP mailing list for parents]“, and include:
Your name
Your mailing address
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.
Euglycemia, or a normal concentration of sugar in the blood, is an important goal for all people living with congenital hyperinsulinism (HI). A reliable glucometer, a device that measures the concentration of glucose in the blood is an important tool helping those with HI achieve euglycemia. One of the ongoing issues for those that use glucometers is that they are not always accurate. According to an article in today’s New York Times, the blood sugar levels recorded by glucometers used at home differ from actual blood sugar levels, as measured by more precise devices used in some hospitals, by as much as 20%. The errors made by glucometers in blood sugar readings may prevent people with HI from treating hypoglycemia in a timely manner. Prompt treatment of hypoglycemia is necessary to prevent the possibility of neurological damage. For that reason the news that the FDA may toughen standards for glucometers is welcome news. See the attached article for all the details:
Accuracy of Home Glucose Monitors Questioned – NYTimes.com.
Thanks Julie.
Lori has found an intersting article abstract about newborn molecular genetic testing in Europe.
CHI will be hosting a dinner meeting on September 11, 2009 at the Beacon, 25 West 56th St., NY, NY. Adults and teens with HI are invited to attend as are the parents, grandparents and caregivers of children with HI. Members of CHI and the newly formed CHI Scientific Advisory Group, including pediatric endocrinologists who have worked extensively on HI, will also be in attendance.
The meeting will consist of two parts. Part One will be a Question and Answer session. Attendees will have the chance to pose questions to HI medical specialists about diagnosis, the different types of HI and their genetic underpinnings, surgical and medical treatment, daily management, feeding issues, developmental issues, the transition to diabetes for some, among other topics.
In the second part of the evening HI parents and medical professionals will enter into a discussion on the practical ways in which they can support each other to further scientific research and positive outcomes for children and adults living with HI.
As mentioned above, there will be a special teen table where teens will have an opportunity to talk amongst themselves. They will also be welcome to participate in the Question and Answer session.
The dinner meeting will be on Friday, September 11, 2009 from 6:00 to 8:00PM. The schedule for the evening will be as follows:
6:00-6:30PM Drinks and Informal Discussion
6:30-7:15PM Dinner and Question and Answer Session with the Experts
7:15-8:00PM Dessert and CHI Scientific Advisory Group Discussion
We really hope you can make it. If you are interested please send in the attached form. Seating is very limited so make your reservations early. It will be a great opportunity to meet with other HI parents and individuals with HI, as well as leading professionals in the field. It will also be a chance to become more involved with CHI. If you have any questions about the dinner meeting or CHI, please call or email Julie Raskin at 973-566-0334 or jraskin@congenitalHI.org.
Thanks Julie.
We’re very pleased to announce that we’ll be attending the Lawson Wilkins Pediatric Endocrine Society / European Society for Pediatric Endocrinology 8th Joint Meeting on Global Care in Pediatric Endocrinology in New York, September 9-12, 2009. The URL for the conference is http://www.lwpes-espe2009.org. We will have a non-profit booth in the vendor area. If you’re going to be at the conference, please stop by and say “Hi!”.
In addition to running a booth for outreach, we will also have a more technical poster presentation, “Global Outcomes for congenital Hyperinsulinism” summarizing some of the HI outcomes our international community has collected from 20 countries. I think we have a really unique breadth of experience that is not found in any one other organization.
And finally, we’re organizing a dinner for some doctors, parents, families, and CHI members! The date is set: Friday, September 11. Come back here for more details on the when and where.
This is an exerpt from a new textbook for diagnostics aimed at pediatricians. This section is co-written by Dr. Vaneeta Bamba and Dr. Diva D. De León-Crutchlow.
De León-Crutchlow was asked to be on our Scientific Advisory Group.
This is a nice complement to the article by Glaser posted by Andie.
http://www.wrongdiagnosis.com/h/hypoglycemia/book-diseases-20a.htm
Find The 5-Minute Pediatric Consult on Amazon.
Thanks to Lori for this post.
Hello and welcome. We at Congenital Hyperinsulinism International have decided to start a blog to contribute to our mission of helping children, adults, and families living with congenital hyperinsulinism.
For now, the kind of content we will be talking about include: research articles, new research methods, announcements of CHI activities, and information that will help our community in other ways.
We intend that this is not to be a blog of “opinion.” We are currently encouraging comments from readers that are objective, on topic and non-personal. Any comments that we deem to be off topic or of a personal nature will likely be removed from the post. For example, if you’re mentioning a particular clinical association (e.g., your kid’s name), you’ve crossed the line. If you feel the overwhelming need to share your personal HI story and ideas, there is a place where that kind of thing is encouraged: the HyperIns Yahoo Group.
