This is just something that came up in the last few days, that I’m very excited about. There is a big genetics project going on at Children’s Hospital in Philadelphia, and I just found out my son and I are going to be included in it.

Now, I’m just waiting to hear back regarding how to ship our blood…labs can be very funny about this sometimes.

Hopefully, this study will lead to some answers..

Begin forwarded message:

From: Teddy
Date: January 24, 2012 5:50:00 PM PST
To: RG, PhD
Cc: AT, PhD
Subject: Re: Shipping blood to Philadelphia

Thank you very much–this sounds wonderful–

I’m looking forward to speaking with RS about the instructions. She can call me at 323-xxx-xxxx at any hour, but afternoons are better. (She can fax me directly at 323-xxx-xxxx–I don’t always answer the phone–)

The more specific the instructions, the better…labs are getting a little skiddish about shipping blood sometimes. I def want to make sure I get it right..

I spoke with my mother (who lives in Virginia, outside of Washington D.C.), and she said she will help.

(I also know an immunologist in northern Virginia I once saw I can call and ask him for help if necessary–my mother can probably swing by his office one day…I can figure it out–).

I’m still working on my father–once I have the specific shipping instructions, I can call labs in Ottawa and see if they will ship to the U.S. I won’t give up without a fight–

Thank you very much for all of your help. I will make arrangements to ship my blood, my son’s and my son’s father as soon as I receive the specific instructions…

(Will antibiotics or IVIG effect any of the blood tests? My son and I are both on daily antibiotics (for obvious reasons–we’re always sick–), but I also get ivig sometimes, which helps a lot…whenever I can get it 🙂

Thank you very much–this means the world to me, and I know it must be a lot of work for you. I really appreciate this.

Warmly,
Teddy 🙂

On Jan 24, 2012, at 4:53 PM, RG wrote:

Hi Teddy

I’m including AT and AR on the emails so they are in the loop as well.

I’ve spoken to my director and he gave me the go-ahead to pursue this. We would like to collect blood from you, your son, your son’s dad, and both your parents if possible. As I understand it, you, your son and your father are affected. Your mother and your son’s father are not affected. Please correct that statement if its wrong.

I do not believe you (or anyone else) will need to come to Philadelphia. Everyone can get blood drawn locally and shipped to us. In addition, each participating family member will need to consent as well. You will need to speak to our clinical program lead, RS about consenting and how to get blood. I will forward this request to her to get the ball rolling. What phone number and times would it be best for her to reach you at?

RG

On Sun, Jan 22, 2012 at 3:26 PM, RG wrote:

Hi Teddy – Thanks for the information. I’m still looking into how best to proceed on this. I will start asking questions on Monday. Hopefully it won’t take too long.

RG

On Sat, Jan 21, 2012 at 10:51 Teddy wrote:

I just wanted to let you know, I’m working on my father to see if I can get some DNA on him for your genetics study…it will involve some creative maneuvering on my part, but I’m going to try–

(What could we use, even if it’s not ideal? The easiest way would be for me to go to Ottawa and pluck some hairs out of his head on my way to see you in Philadelphia, but I also could try calling his doctor directly, to see if I can recruit his help in some way…shipping anything blood sample from Canada might be difficult though…I’m going to see what I can do–)

Thanks again for your help. I’m tired of being ill all the time, and I’m even more tired of being a medical mystery 🙂

I’m looking forward to being able to send you our DNA!

Warmly,
Teddy 🙂