The conference had various breakout sessions so each condition had their own schedule and here is what happened for Homocystinuria session. 

With the speaker's permission I will include their presentations.

Friday, June 25, 2004

HOMOCYSTINURIA SESSION

8:30 -9:15- Round Table Talks; Time for Families to Introduce Themselves, Talk about what they want to learn from this conference, etc.

9:15-10:00 Donald H. Chace, Ph.D. M.S.F.S. Section Chief Division of BioAnalytical Chemistry and Mass Spectrometry; Pediatrix Detecting Homocystinuria in Newborn Screening

10:00-10:30- Break & Vendor Displays

10:30-11:15 Keiko Ueda, RD, Floating Hospital, New England Medical Center, Boston, MA

11:15-12:00- Malathy Ramanjuam leads candid discussion of how to get homocystinuria parents to become active, writing to clinics to pass info to hcu patients to put in touch with National Coalition.

12:00-1:15 Lunch (provided with ticket)

1:15-2:15 Jonathan Picker, MD Children's Hospital, Boston, MA Homocystinuria Topics to include: Betaine, Treatment, and Psychological Issues in late treated

2:15-2:30- Break & Go to PKU Room for Cooking Demonstrations and Workshops

2:30-3:30 Dianne Sullivan, Sandwich, MA Cooking with Dianne; A great low protein cooking demonstration

3:30-4:30 Malathy Ramanjuam, HCU Parent, Los Angeles, CA & Taste Connections, Los Angeles, CA Taste Connections Workshop, Another great low protein cooking demonstration

Newborn Screening Workshop- Friday, June 25, 2004 7:00PM-10:00PM

7:00- 7:10 Opening Remarks

7:10-7:40 Piero Rinaldo, MD Mayo Clinic, Minneapolis, MN ACMG Recommendations and What They Will Mean for NBS

7:40-8:10 Donald H. Chace, Ph.D. M.S.F.S. Section Chief Division of BioAnalytical Chemistry and Mass Spectrometry, Pediatrix

8:10-8:40 Charles Hehmeyer, Esq. The End of the California Pilot Program and Legal Issues Faced by Hospitals and Physicians

8:40- No later than 10:00 PM- Question and Answer Time- Dr. Rinaldo, Dr. Chace, and Attorney Hehmeyer will answer your questions in an open forum.

Plenary Session for all Disorders - Saturday, June 26, 2004

7:30 AM-8:30 AM- coffee and light breakfast for attendees
8:30 AM- 4:30 PM
8:30 am- 8:40 am Trish Mullaley, President National Coalition for PKU & Allied Disorders 'We're All in this Together.'
8: 40- 9:20 Gerard T. Berry, MD Jefferson Medical College, Philadelphia, PA Topic: Liver Transplantation 9:20-9:45 -Question and Answer Time for Dr. Berry
9:45- 10:15 Mark Korson, MD Proposal on Metabolic Outreach Service
10:15-10:30 Question and Answer Time for Dr. Korson
10:30-10:45 Break After break we will be switching gears to knowing your rights in obtaining special services for you or your child(ren).
10: 45-11:30 Trica Luker Know the services available to you. Don't be denied.
11:30-11:45- Question and Answer Time
11:45-1:15 Lunch (provided with ticket)
1:15-2:00 David Paolella, PKU Parent & Cambrooke Foods School Lunch Program
2:00-2:15 Question and Answer Time
2:15-2:45 Sandy Bulcher, RN & MSUD Parent Federal Formula Legislation
2:45-3:00 Question and Answer Time
3:00-3:15 Break
3:15-4:30 Professional Panel: Professionals from Plenary and Sessions to answer questions in an open forum.
4:30 Closing Remarks

For Michigan Residents: 6:30 PM-9:30 PM A special Session will be held for Michigan conference attendees. This session will include: Ongoing legislation in your state Organizing a non profit for metabolic families Clinic changes, and what that means for you Questions regarding the Michigan session can be directed to Sandy LaPrad @ smlaprad@yahoo.com