Information in the Mail. July 6, 2008

I sent out the packets on Saturday, July 5, 2008 so be expecting them to arrive in the mail this week.  Please review the information and let me know ASAP if I need to make any changes to your room reservation.

For dinner on Saturday we are having a themed event.  Our theme is going to be “Survivor,” feel free to dress for the occasion if you like.  For those of you who have watched the tv show, you know that episodes are full of “challenges”, “tribal counsel” and an “immunity idol.”   We will have our own “family challenges” and the winner will receive the “SCID Conference 2008 Immunity Idol.” 

See you in a couple of weeks!

Counting Down the Days!!! July 2, 2008

The countdown has begun.  We have 23 days left until the SCID Conference.  Just a quick update, I’m in the process of putting informational packets together for everyone attending the conference.  Each packet will include:

1.  Updated Agenda

2.  Supply List/Rules

3.  Confirmation of your Room Reservation

4.  Directions

5.  General Informaiton

Please expect these packets to be mailed out by the end of this week.

Send any questions to Heather@scidangelsforlife.com

Registration is now over June 23, 2008

Registration is now officially over.  For those families that want to come but have not registered, you need to contact me immediately at Heather@scidangelsforlife.com and I will put you on a waiting list, but unless someone cancels, there will not be room for you.

 

We’ve had a wonderful turn out for registration and I am very excited about this event.  This SCID conference will be a wonderful place for families to meet, share life experiences, gather information, share information and for families to provide hope to one another.  That being said, I’m looking forward to seeing and meeting each and every one of you next month!

Registration Continues! June 9, 2008

Spots are still available for next month’s conference.

Register Now!!! 

At: http://www.primaryimmune.org/pubs/SCID_Conf_2008_registration.pdf 

Fax your registration to Heather at (863) 647-9537

 

Last Call !!! June 4, 2008

This is your last chance to register for the conference if you haven’t already.  I still have a few rooms left and will keep registration open until they are gone….so REGISTER NOW!

 

The online registration has been taken down so you will need to print the pdf form and fax it back to the IDF at 410-321-9165.  For the form, click here:  http://www.primaryimmune.org/pubs/SCID_Conf_2008_registration.pdf

 

If you have not received email confirmation from me, Heather Smith, saying that I have received your registration, please let me know ASAP.  Email me at Heather@scidangelsforlife.com so I can make sure your registration was received successfully. 

See you at Wintergreen Resort in July!!!

Registration Ends Soon! May 30, 2008

There are only 13 rooms left, so make sure you REGISTER NOW!

Registration ends on Tuesday, June 3, 2008 so don’t delay.  Click here to print the form and either mail it or fax it back to the IDF :http://www.primaryimmune.org/pubs/SCID_Conf_2008_registration.pdf

 

If you have not received email confirmation from me, Heather Smith, saying that I have received your registration, please let me know ASAP.  Email me at Heather@scidangelsforlife.com so I can make sure your registration was received successfully. 

See you at Wintergreen Resort in July!!!

Conference Dress Code May 27, 2008

There isn’t a dress code for the conference, however, I do recommend that you keep in mind that the meeting rooms are usually on the chilly side, so bring a sweater. 

1.  Friday evening is an outdoor barbecue

2.  Saturday’s dinner will be inside with putt putt golf and other outdoor activities to follow after dinner.

3.  You may want to bring a swim suit, walking shoes, golf clubs, tennis racket, bug spray and, sun tan lotion.

 

*Please remember this is a family event so no tank tops or cut off shorts.

Hurry and Register May 16, 2008

We’ve had a great response so far and I am happy to say that half of the rooms are already booked.  What that means for those of you who haven’t registerd, REGISTER NOW! Registration is on a first-come, first-severd basis and will be limited. 

Those registering by fax or mail click here:  http://www.primaryimmune.org/pubs/SCID_Conf_2008_registration.pdf

Credit card users click here: https://www.primaryimmune.org/youcanhelp/events_scidconf2008/eventform.asp

*Important reminder:  Anyone who registers online, PLEASE send me an email at Heather@scidangelsforlife.com notifying me that you’ve registered.  That way I can send you an email confirming your registration, after I’ve verified receipt with the IDF.  Thank you!

Online Registration Problem! May 14, 2008

ATTENTION ALL SCID CONFERENCE ATTENDEES:  we’ve had a problem with the online registration and have only received two registrations online.  Anyone who has registered online with a credit card between May 6th and May 14th is going to have to do so again.  The credit card information is being entered manually so you don’t have to worry about being charged twice…that WONT happen.  There was a bug in the program and even though you clicked “submit” on the form, it never went through and all the information has been lost. 

**In order to be certain this problem has been fixed, please send an email to Heather@scidangelsforlife.com after you have completed your registration, telling me you have registered and I will send you a letter confirming everything was successfully transmitted.

I’m sorry for any inconvenience this may cause you!

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