Logo Drawing Contest! January 30, 2008

Thanks to the creative mind of Lisa Hellier, a mother of a SCID angel, we have a motto for this year’s SCID Conference: “Closing Doors on SCID, Opening Hope on Treatment. ”

That being said, we need a logo to go with our motto. This is where all of you come in, we are having a contest for the most creative logo. The logo that is chosen will be printed on the back of the T-shirts that will be given out to all participants at this years conference. The lucky winner will also win a $100 cash prize for having the winning design.

Rules and Guidelines:

1. This contest is for CHILDREN only and you must be 16 years of age or under.
2. Please use colored markers and draw free hand.
3. Email your drawing, name, phone number and address to Heather@scidangelsforlife.com or mail it to P.O. Box 7734 Lakeland, Fl. 33807-7734
4. Deadline is March 31st so make sure you have your drawing submitted before then.
5. The winner will be announced at the conference and the cash prize will be given at that time.
6. Winner does not have to be present to receive prize.

Sign up to receive updates January 30, 2008

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Publications from previous conf. January 20, 2008

First SCID publication:  publication-from-last-conffanosgrowup.pdf

Second SCID publication:  publication-from-last-conf-fanossibcarriertest.pdf

SCID Conference 1997 January 19, 2008

 Here are a few pictures from the first SCID Conference in Bethesda, MD back in April of 1997.   

                             

              (T-shirt from the first conference)    

  
                        
       (Heather Smith & Dr. Alan Flake from CHOP)
         
                       

   (Heather Smith & Lisa Hellier both SCID mom’s)

pictures January 19, 2008

Here’s a pictures from an IDF Patient and Family Retreat at Wintergreen.  As you can see everyone is really enjoying themselves!

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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.

Sponsors January 9, 2008

This conference would not be possible without the generous donations and contributions from our sponsors.  Our sponsors, in alphabetical order, are:

Baxter Healthcare Corporation
CSL Behring
Dean Family Foundation
Immune Deficiency Foundation
Jeffrey Modell Foundation
National Institute of Health
Octapharma
SCID, Angels for Life Foundation
Talecris Biotherapeutics

Registration January 9, 2008

Registration for the SCID Conference will take place in May of 2008.  Please check back for further information.

Transportation January 9, 2008

Airport Information

Eagle’s Nest Airport (W13), Waynesboro, VA, 23 miles
Available for private aircraft.

Charlottesville-Albemarle Airport (CHO), 40 miles

Shendoah Valley Regional Aiport (SHD), 45 miles

Lynchburg Regional Airport (LYH), 48 miles

Richmond International Airport (RIC),  110 miles

Washington Dulles International Airport (IAD), 133 miles

Airport Shuttle Service, providing guests with easy access to the resort.  Rate information for this service is pending.

Rail Information

Charlottesville Passenger Station (CVS), 31 miles

Staunton Passenger Station (STA), 32 miles

Lynchburg Passenger Station (LYH), 44 miles

Location/Directions January 7, 2008

Wintergreen Resort
Location & Directions

Wintergreen Resort is located adjacent to the Blue Ridge Parkway in beautiful Central Virginia. The resort is accessible by automobile, air and rail.  Wintergreen Resort & Spa

Driving Directions

From areas east and northeast:
Follow Route 29 south to I-64 west to Exit 107 (Crozet, Route 250). Take Route 250 west 5 miles to Route 151 south, turn left. Follow Route 151 south 14 miles to Route 664. Turn right and Wintergreen is 4 miles ahead on Route 664.

From areas west, northwest, and southwest:
Take Route 29 north just north of Amherst to Route 151 north, turn left. Follow Route 151 for 21 miles to Route 664. Turn left and Wintergreen is 4 miles ahead on Route 664.

From the Blue Ridge Parkway:
Take Reeds Gap exit (Between milepost 13 and 14) on Route 664 and go east one mile to the Wintergreen entrance on your left.

Approximate Driving Times (in hours) Richmond, VA: 1 ½ Roanoke, VA: 2 Washington, DC: 3 Greensboro, NC: 3 Virginia Beach, VA: 4 Baltimore, MD: 4 Raleigh/Durham, NC: 4 Philadelphia, PA: 5 Pitsburgh, PA: 5 New York, NY: 8