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Exon Deletion 3-7

Connect with other families with exon deletion 3-7.

Website: http://www.frontstep.us/Delong/mda.htm
Location: Derry, New Hampshire (You are Welcome to Visit)
Members: 27
Latest Activity: Apr 10

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Daughters of Carrier Moms

Started by Colin McKenzie. Last reply by Colin McKenzie Jun 13, 2011. 2 Replies

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Comment by Kelly Bruhl on July 6, 2010 at 4:25pm
Looks like the protocol should be approved tomorrow. We are scheduled to have a biopsy in the afternoon. I'll let you all know how it goes. Feel free to email me at Kelly.Morony@yahoo.com
Comment by Wendy Bertellotti on June 26, 2010 at 4:26pm
Let's touch base over the phone:) Wendy
Comment by Anessa Fehsenfeld on June 25, 2010 at 11:31pm
Do we know how much money is needed for the study?
Comment by Wendy Bertellotti on May 25, 2010 at 10:31am
Everyone,
Please send contact information (email, phone) to my personal email at wbertellotti@gmail.com. I will start a group email list. So, we can stay connected. While this is a great place to connect, I'm thinking we can discuss fund raising on our own lines. Can't wait to hear from you all! All my best, Wendy
Comment by Eileen DeLong on May 25, 2010 at 10:06am
Hi Wendy,
My two boys are both see Dr.Wong and have the 3-7 deletion. We are going out to see her in Aug. I am going to email her right now and see if we can get the biopsies done while we are there since we live in New Hampshire. Maybe she can send me the info and we could send it out to everyone in this group. I know at least a few more of the ones in this group see Dr.Wong. This is so exciting! I will try to call you tonight!
Comment by Jeni Ward on May 24, 2010 at 7:06pm
We don't go to Dr. Wong, either. Colin has a deletion of exon 7.
Will any of you be in Denver for the conference?
Comment by KATHY TURNER on May 24, 2010 at 6:50pm
Wendy,
My son is currently not a patietn of Dr. Wong's. Would this be something that Jacob would participate in as well? If so, when's a good time to call you. I don't have any idea what's going on.

Kathy Turner
Comment by Wendy Bertellotti on May 24, 2010 at 12:58pm
Hi Kathy,
Please call me so we can get a list started of all of us. 760-522-6490 or I can call you. What's your number?
Comment by Don Cooley on May 24, 2010 at 12:55pm
Wendy:
Hi I am Kathi from the Chicago area. My son Tyler is 14 and fits i this deletion. We just met with Dr. Wong last month and she said that she would get us in touch with a West Coast family that had the same deletion....as funds were needed to be raised to get the muscle biopsies to Dr. Wilton in Australia. Also to get all 28 patients to Cincinnati to get these biopsies all done at the same time. It looks like this is what your message is about.. If so let me know.
We are open to doing some fundraising quickly in Illinois. Also it would be great if we could somehow get a list of these 28 patients together and share the details. At that point we could all work together to get together whatever the need. Do you have an email address for Dr. Wilton.

Looking forward to hearing from you...Also on my Cincinnati visit I came up with a great quick fundraising idea....that another parent had some details about...We could all easily do and make the necessary funds.

Kathi Cooley
Comment by Wendy Bertellotti on May 24, 2010 at 11:08am
Hi all,
Hope you are well! I have some updated information on Dr. Wong's intention with research that involves all her patients, but our deletion will be first to need samples done. Please call if you want to talk about it more. My number is 760-522-6490. Wendy Bertellotti (in San Diego)
 

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