For those planning to attend the CHI Conference in San Diego on June 18-19, we recommend registering for the conference and making hotel arrangements as soon as possible.

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!

CHI is happy to announce that there are still spots open for the Congenital Hyperinsulinism Family Conference 2010, which will take place on June 18^th and June 19^th at the Bristol Hotel in San Diego.  The agenda is shaping up to be quite exciting.

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!

If you’re nearby around May 6 and 7, Matt Hopkins, President of CHI, will be on a business trip for his day job.  He would like to take some extra time off and meet you.  If you’re interested in discussing diagnosis, treatment, support for HI families and children, specific details of how your medical system manages (or not) HI, what facilities you have access to, etc., please let him know ASAP (he’s making travel plans very soon).

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

Contact him at MHopkins@CongenitalHI.org

Dear HI Families,

CHI is very excited to announce that we will be hosting a third family conference this year on June 18 and 19^th in San Diego, California at the Bristol Hotel in downtown San Diego.  We have planned the family conference to coincide with the Endocrine Society Meeting, an international meeting of endocrinologists.  We have reached out to HI researchers and clinicians from the U.S. and around the world and are happy to report that a number of them will be speaking at our conference.

At the CHI HI Family Conference participants will learn more about HI and meet other families.  There will be opportunities to learn more about the genetics of HI and different approaches to management and treatment of children, adolescents and adults.  There will also be sessions focusing on feeding and development issues, and there will be opportunities for socializing and networking with other HI families, as well as a session on how to get involved in HI support and advocacy.

The Conference will begin in the morning on Friday, June 18^th and will run through the afternoon of Saturday, June 19^th.  There will also be a Friday night Gala Dinner at the hotel.  The conference will be held at The Bristol Hotel in downtown San Diego.  CHI has blocked some rooms at a discounted rate of $129 per night.  The rooms are singles or doubles.  The link for CHI hotel reservations is https://gc.synxis.com/rez.aspx?Hotel=17254&Chain=6158&group=CHI.  The address is 1055 First Avenue, San Diego, CA 92101, and the toll-free telephone number is 800.662.4477.

There will be a designated space at the hotel where children can play and socialize.  Parents will be responsible for caring for their children including all medical aspects of care.

The registration fee for the conference is $75 per adult.  This fee includes entrance to all the sessions and meals from breakfast on Friday, June 18 through lunch on Saturday, June 19^th, including the Gala Dinner.  The registration fee for children under 12 is $50 and also includes the Gala Dinner.

We really hope you can make it and ask that you complete the Registration Form.   Conference attendance is limited to the first 100, so don’t delay in sending in your form.  Try to make your hotel reservations early to take advantage of the special rate.  Rooms at the special rate are limited as well.  We really hope you decide to attend the conference.  It will be a great opportunity to learn and to make connections with other HI families.  If you have any questions feel free to call or send an email.

Sincerely,

Julie Raskin

jraskin@congenitalhi.org

973-566-0334

San Diego Registration Form

Save the Date

CHI Family Conference

June 18 & 19, 2010

San Diego, CA

Exact Location TBA

Congenital Hyperinsulinism International (CHI) invites you to attend the third Congenital Hyperinsulinism Family Conference.

This conference is intended for individuals with Congenital Hyperinsulinism (HI) as well as  family members and caregivers of those with HI.  Speakers and participants are invited from around the globe.

Detailed information on conference location, registration and the agenda will be posted in the next couple of weeks.  Stay tuned and please plan on attending!

Please check for updates on our website www.congenitalhi.org and on our  Facebook page as well as this very blog.

Questions?  Contact:

Julie Raskin
V.P. Congenital Hyperinsulinism International
jraskin@congenitalhi.org

In November, CHI (Congenital Hyperinsulinism International) qualified for membership to NORD, The National Organization for Rare Diseases. “This is really good news for CHI,” said Isabel Calderon the CHI Board of Directors liaison to NORD. “With this membership, CHI will be able to benefit from NORD’s many resources and services.”

Prior to the creation of NORD in 1983, many organizations that worked to improve the lives of people with rare diseases were isolated and unable to get the attention they needed to make a difference. With the establishment of NORD, their voices are now heard. A rare or “orphan” disease affects fewer that 200,000 Americans. When rare disease organizations work together on common goals, they gain strength in numbers.

NORD was created when family members and patients worked together to get the Orphan Drug Act passed. This important legislation provides financial incentives to encourage development of new treatments for rare diseases. Today, once again, NORD is advocating for its members on pending legislation, urging Congress to act on health care reform, a critical issue for people living with chronic disease.

Matt Hopkins, President of CHI sees NORD membership as a great step forward because it will put CHI in the loop on a number of important fronts including information on patient assistance programs, research grants and fellowships, and access to investigational treatments. NORD membership will also provide CHI with many opportunities to amplify its awareness and advocacy work.

Julie Raskin
Vice President, CHI

Congenital Hyperinsulinism International (CHI) held a dinner meeting in New York City at the Beacon Restaurant on September 11, 2009. There were 56 people attending in all, including HI patients, parents, nurses, physicians, researchers, and other professionals from the health care industry.

The meeting also brought together members of the newly formed CHI Scientific Advisory Group and other specialists in the field. CHI is proud to report that medical professionals who attended and participated in the meeting are among the leading HI specialists in the world. Advisors in attendance from five countries included Dr. Lydia Aguilar-Bryan, Dr. Andrew Cotterill, Dr. Diva De León-Crutchlow, Dr. Morey Haymond, Dr. Khalid Hussain, Dr. Kusiel Perlman, Dr. Charles Stanley, Dr. Paul Thornton, and Dr. David Zangen.

The meeting was extremely successful in a number of ways. For the HI families, the dinner was a great opportunity to ask advisory board members questions on a variety of HI related topics. CHI board members and advisers were able to discuss how to work collaboratively in the future to improve the lives of HI patients. Topics of discussion included remarks on current research projects, encouraging participation in scientific studies, how to increase early diagnosis and raise awareness of the condition, how to provide more support and education to families worldwide, how to help HI families in parts of the world where treatment options and medical supplies are more limited, and how best to catalog HI-related patient outcomes in order to further research.

For many, the social part of the evening was equally compelling. Many of us made new friends within the HI community. It was also a chance to get back together with old friends and to share stories of how our children have matured and grown and the challenges we still face. The teenagers among us may have been the most excited about spending time together and feeling celebrated for who they are and what they have overcome.

The dinner meeting was planned to coincide with the LWPES/ESPE 8th Joint Meeting on Global Care in Pediatric Endocrinology that was also held in New York from September 9-12. All of the endocrinologists at the dinner meeting as well as a number of CHI board members attended the LWPES/ESPE meeting, where current research on a host of pediatric endocrine topics including HI were reported on and discussed. Many of the advisers presented their research over the course of the meeting. CHI also had a booth and presented a scientific poster at the meeting. At the booth we met many endocrinologists from around the world who are treating patients with HI. It was very gratifying to meet so many knowledgeable experts who care so deeply about their patients with HI. Many of them talked about the importance of education and awareness about the condition. We hope to be in touch with many of them and to find out how we can support patients and patient groups in their countries.

Thank’s Julie.

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.

CHI will be hosting a dinner meeting on September 11, 2009 at the Beacon, 25 West 56^th 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.

Registration Form

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.