Crigler-Najjar Disease Conference

June 11-13, 2003

Lancaster, Pennsylvania

The Clinic for Special Children has agreed to coordinate a conference on Crigler-Najjar Disease to be held in June in Lancaster, Pennsylvania. The conference is being organized at the request of parents of children with C-N and the newly formed Crigler-Najjar Association after a previously planned May conference in Vermont was cancelled. The June conference will be sponsored by the Clinic with help from C-N families and is planned primarily for C-N families in the U.S. given the limited resources available for the meeting.

The conference will be held at the Willow Valley Resort and Conference Center in Lancaster, Pennsylvania, which has a block of rooms available for reservations at a special rate. Please reserve you room by returning the enclosed green registration sheet to Willow Valley Conference Center or by calling them to make your reservation before May 12^th. We plan to have an informal welcoming reception on Wednesday June 11, followed by a daylong series of speakers and discussions on various topics on Thursday, June 12^th. The conference will conclude at noon on Friday, June 13^th with time that morning for discussion related to topics of interest to parents and pertaining to the new C-N Association.

The Clinic for Special Children, Dr. D. Holmes Morton and Dr. Kevin Strauss, will moderate the meeting on Thursday, June 12^th, and chair discussion of several topics as presented by invited speakers. The meeting is intended to offer patients and parents a review of current treatment options for Crigler-Najjar and presentations of possible new options in research. The following topics and presenters are confirmed:

Liver Transplant: The liver transplant team from Pittsburgh, PA, will present information related to liver transplant – what is involved in the decision to be listed for transplant, transplant procedures, recent data on immune modulation and transplant outcomes.

Stem Cell Transplant: Dr. Bryon Peterson, University of Florida; Dr. Steven Strom, Pittsburgh Children’s Hospital, will present new developments in hepatic stem cell transplants.

Phototherapy: Dr. Hendrick (Henk) Vremon, Stanford University, will present current technology on phototherapy approaches including the use of LED lights and data on a recently tested new phototherapy unit.

Medications: Dr. Jeffery Maisals, William Beaumont Hospital, MI, Dr. Vreman, Dr. Stauss and Dr. Morton will review medications used to prevent bilirubin toxicity and those used to enhance effects of phototherapy.

Gene Therapy: What has happened since the last C-N meeting?  Why did "chimeraplasty" fail? Where is current research in gene delivery?  Dr. Cliff Steer, University of Minnesota (Michael Blaise MD and representative from NIH not yet confirmed)

Dr. and Mrs. John Crigler are invited but not yet confirmed.

Financial resources are limited compared to the two previous national meetings in 1996 and 1999, and there are not travel/expense stipends to offer participating families as in 1999. However, there may be limited help available for families who otherwise could not afford to attend the meeting.  Several C-N families are sponsoring fund raising activities such as bake sales, etc. to provide some funds for travel assistance.  If a family needs help to meet your travel or lodging expenses, please contact the clinic and ask to speak with Caroline Morton (717 687-9407). Your request will be handled confidentially and met as best we can with funds available.  The C-N Association is also trying to raise money to help with the cost of the conference.  Rather that charge a registration fee to families to help cover meeting expenses, we suggest that anyone that wishes and is able to contribute to the meeting can do so by sending a donation designated for Crigler-Najjar fund to the Clinic for Special Children. The Clinic has agreed to cover the cost of invited speakers.  Other costs are related to meeting room reservations, the conference lunch and dinner on the 11^th and refreshments during breaks. The Clinic will also meet these expenses, but we will appreciate contributions since the conference was not part of our original budget for this year.

Parents are requested to bring their own phototherapy units for their child. If it is not possible to bring your phototherapy unit, please let the clinic know. There will be an extra unit or two available courtesy of the Martin Family.  The hotel beds are platforms, which prevents units from positioning under the bed frame. There will be roll-a-way beds available that can be used for light units and of course for infants there are cribs available.  Please indicate on the registration forms if you will need either a roll-a-way bed or a crib (and how many) so the hotel can accommodate you.

We hope to have activities planned for children in various age groups. For teenagers, please let us know an ideas or questions you have for group discussions and also for activities. Willow Valley has several pools, indoor and outdoor, an activity area and a golf course. We want to plan a conference that also will be of interest to teens. (Write down your ideas on the back of the registration form that will be sent in to the clinic.)

We hope you and your family can attend and we look forward to hearing from you. 

Remember to contact Willow Valley to make reservations 800 369-9877 or download Willow Valley reservation form (fax 717 464-4482). Mention the Clinic for Special Children conference June 11-13.

Also, complete and send the Conference Registration form to:

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