From Sumathi:
I am really excited that the WAS Conf registration is now open. You can register on line. Many of you have already registered!! Thanks for doing this so quickly. It helps with the planning. As it is all coming together I am in awe at the thought that in a few months we will be in the presence of these amazing physicians and that we will get to meet so many families!! I hope that all of you will be able to come to the conference. Please feel free to e mail or call me at 919-641-7134 if you have any questions.
With all sponsorship that we received we were able to reduce the conference rates significantly. It will cost $150 for a family of 4 for two nights and that includes conference registration, food and child care! This is an unbelievable deal and I hope that many families will be able to make it there.
Many of you may have received the IDF mailer. I have attached the forms with updated information. Please have your children participate in the T shirt contest. You do not have to attend for them to participate in the contest! Please send it in to Buffy at the NIH before April the 15th! If you know other WAS families, please forward this to them.
With all sponsorship that we received we were able to reduce the conference rates significantly. It will cost $150 for a family of 4 for two nights and that includes conference registration, food and child care! This is an unbelievable deal and I hope that many families will be able to make it there.
Many of you may have received the IDF mailer. I have attached the forms with updated information. Please have your children participate in the T shirt contest. You do not have to attend for them to participate in the contest! Please send it in to Buffy at the NIH before April the 15th! If you know other WAS families, please forward this to them.
Thanks!
Best,
Sumathi
Best,
Sumathi
1 comment:
just my luck =) i find about this the day of the conference :)
My son is a bit older, but has gone through some of the same things as yours.
at 9 months old, he had a major bleed (caused blindness, and loss of motor control on his left side, and he is developmentally delayed, but is now starting to catchup at a very fast rate)
we had the bone marrow transplant at 18 months, which was a 9/10 match (we had a 10/10 but the person kept changing there mind)
i see from the medicine list you are on alot of the same ones we are on..
Levothoroxane we take 1 1/2 pills (found out if you give this with any iron/magnesium supplement it lowers its affectivness)
Prednisolone 3 1/2 years of this.
Calcium/Magnesium/Zinc supplement
on all of these. Calcium actually reversed the rapid bone age progression caused by the predinsolone
for the skin issue, we went though a bunch of the same things. for us it ended up being caused by the sun (go figure, we live in Seattle rain capital of the us) sun block (spf 50 and higher) worked for us.
we did ivig for 3 almost 4 years.
out here in Seattle Dr hans ochs (my son's doctor that we moved from ny to see) he has discovered two very important things. 1 the test to detect WAS and the second thing is a test called Bacteriophage which injects a harmless virus into the immune system, and from there they can detect how well the immune system is working.
if you have any questions please feel free to contact me
Derek
dlbeaney at yahoo dot com
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