Hi Bobby,
 

Hi Bobby, thanks for your e-mail. Thought I'd share with you these two links about my ALS awareness project. How are things going for you? Fred

My Virtual Tourist web page:http://members.virtualtourist.com/m/8b6ad/ [look to the right of my home page for the section “Travel Photos”. Click on “More” to reach the page listing all of the photo links] Massachusetts General Hospital (Boston, USA) newsletter 2006:
http://www.massgeneral.org/pubaffair...72106Siwak.htm

Hi Bobby,

I wanted to respond to the question you e-mailed to the Virtual Advocacy
Community regarding the ALS registry and people who carry the SOD1 gene.
The registry would track people carrying the SOD1 gene. Although all of
the data elements are not finalized (the Registry Act calls for
recommendations from the ALS Registry Advisory Committee), this is
information that would be captured by the registry.

I also wanted to let you know that to some extent the SOD1 database,
which is supported by ALSA, the NINDS repository, and specific
individual researchers currently track people with the SOD1 gene.

I hope this is helpful to you and please don't hesitate to contact me if
you have any questions or if I can be of any assistance to you.

Thanks,
Pat


Patrick Wildman
Director, Communications and Public Policy
The ALS Association
601 Pennsylvania Ave., N.W.
Suite 900, South Bldg.
Washington, DC 20004
ph: (202) 638-6997
Toll-free: 1-877-444-ALSA
fax: (202) 638-6316
e-mail: pwildman@alsa-national.org

From: Rebeccah <mailto:rebeccahrush@comcast.net> Rush
To: 'Bobby' <mailto:robertb@mitchell.main.nc.us>
Cc: matthew@chicagocityarts.org
Sent: Wednesday, July 26, 2006 11:36 AM
Subject: ALS Artist

Dear Bobby,

A friend of ours, who is also helping with the film, is the curator of an
art exhibit here in Chicago in October. He is planning to screen the rough
cut of Indestructible at the show, and would also like to include an artist
that has ALS. I thought you might be a good resource for him to connect
with someone, or could possibly point him in the right direction. His name
is Matthew McDermott, I have copied him on this email as well. I am sure he
will appreciate any info you can provide.

Glad to hear about the chair...can't wait to hear about skydiving!!!

Best,
Rebeccah


Rebeccah Rush
Producer
ALS Film Fund
2412 N. Talman Ave.
Chicago, IL 60647
312-848-5919
<mailto:rebeccahrush@gmail.com> rebeccahrush@gmail.com
<http://www.indestructiblefilm.com> www.indestructiblefilm.com