Hot Topics to be discussed May 13, 2008

Be sure to check out the outstanding list of speakers/presenters that will be at the conference! What an incredible opportunity to have top physicians come together in one location, to talk about SCID’s. 

Here are some of the topics that will be discussed:

1.  Newborn Screening Pilot Program for SCID

2.  In-utero Bone Marrrow Transplantation for SCID, past, present, future

3.  ADA SCID; Gene Therapy, present and future

4.  Immune defects leading to SCID and BMT for SCID

5.  Growth after BMT for SCID; X-SCID gene therapy, history and prospects

6.  Genetics, DNA mutations in SCID

7.  GI problems in post-BMT SCID children

8.  Chronic pulmonary disease with a focus on SCID

9.  Athabaskan SCID

10.Impact of SCID on the family, communicating with children about SCID, carrier testing, adolescent adjustment issues, and bullying in school

 

 

Speakers/Meeting Goals January 9, 2008

Faculty:

Jennifer Puck M.D. – Newborn Screening

Alan W. Flake, M.D., FACS, FAAP- In-utero Stem Cell Transplantation

Harry Malech M.D. – Bone Marrow Transplants

Fabio Candotti M.D. – Gene Therapy

Rebecca Buckley M.D. – Quality of life after transplantation

Morton Cowan M.D. – BMT’s and booster transplants

Terry Harville M.D, PhD. – Autoimmune Disease

Mei Baker M.D. - WI Newborn Screening Program

Joie Davis CPNP,MSN – Genetic Counseling

Lindsay Middelton RN, CGC – Genetic Counseling

Joanna Fanos Ph.D. – Research Psychologist

Carol Ann Demaret - The story of Daivd Vetter

Steve Bellamy -Teen Building and children’s activities

Barb Ballard- SCID email Listserv

Cheryl Deep- Kids and bullying

Meeting Goals:

1. Gather families affected by SCID together in a non-medical setting, share experiences with each other and present concerns to experts in immunology, BMT and genetics.
2. Review of research achievements in SCID diagnosis (including newborn screening); treatment (including BMT approaches, gene therapy, and enzyme therapy); post-transplant outcomes (reconstitution, side effects of chemo-therapy); and management of medical complications and family psychological issues. (Faculty will represent BMT centers, gene therapy, newborn screening, medical complications, genetic counseling, psychology)
3. Develop and prioritize outstanding questions for future research.
4. Synthesize families’ perceptions and experiences to provide updated, informed genetic counseling to newly diagnosed families.
5. Coordinate with planned efforts for a national SCID transplant registry and newborn screening.