Thursday, July 23, 2009

Introducing the Los Angeles Support Group

INTRODUCING THE LOS ANGELES SUPPORT GROUP
Hi this is Joel. It is my pleasure to introduce the Los Angeles TMAU Support Group. The mission of the support group is to offer its members the ability to connect and get to know other members in person and to share tips and methods to deal with the daily struggles of living with TMAU and other Chronic Body Odor Issues. Our hope is that by doing so we can help improve the lives of those living with TMAU and Non TMAU disorders. The LATSG will meet once a month. A significant amount of time will be set-aside to allow members to share themselves with one another. Then we will focus on one or two aspects of living with TMAU and how we can improve that part of our lives.

Everyone is Invited
The mission of the support group is to offer its members the ability to connect...to share tips and methods to deal with the daily struggles of living with TMAU and other Chronic Body Odor Issues.Topic: This upcoming meeting will not have a specific topic. It will serve to build unity among our members. Please come with an open mind and ready to share. Remember, you must give in order to receive.


Our next meeting will be held at:

Date: July 25th, 2009. Saturday

Time: 12:00 PM Noon

Place: Arcadia Community Regional ParkThe park is about 1 mile away from Santa Anita Race Track. You can get to the park via the 210 freeway, exit Santa Anita Ave and head south. The park is located at the corner of Huntington Dr. and Santa Anita Ave.

Address: 405 South Santa Anita Avenue, Arcadia, CA 91006. Park your vehicle in the huge parking area off Santa Anita Ave.


To prepare people for this meeting we will have a conference call on:

Date: July 11th, 2009. Saturday
Time: 11 AM (Pacific Standard Time)
Conference Dial-in Number: (712) 432-1620
Participant Access Code: 391629#


Contacting Joel:
Cell: (213) 300-7589
Email: joelm211@yahoo.com

Body Odor Support Group (BOS)

http://health.groups.yahoo.com/group/Trimethylaminuria/




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Regular FREE (long distance call plan) General and Women-only Phone Conferences

USA : (712) 432 1620
access code : 391629#
NON USA : add 001 prefix
General Conferences: normally every other Sunday at 2pm EDT.
Next call : Sunday February 21th : 2pm EDT

Scroll down for next Women's conference
Women's Conferences: normally every other Thursday 8.30pm EDT. Next call: October 29th at 8:30p.m. EDT


Arranged by the leaders of the bodyodorsupport.com forum

Note: can also be used anytime for unscheduled group chats

Free USA-based phone conferences (if you have a long distance call plan. Otherwise you will be charged as a long-distance call)

For USA-based : (712) 432 1620 then type the access code on your phone keypad: 391629#
Non USA : prefix above with 001 but check to see if it is free with your supplier


Record number of callers : 70+
If privacy is a concern, code your phone to PRIVATE mode
This phoneline can be used anytime to talk to other sufferers
You don't need to talk. You can just listen

Meet-up/Support group contacts

UK : Arun Nagrath: arunnagrath@hotmail.com
Miami : Maria: mpdela1@gmail.com

Action plans

Write an essay on your odor problem for Richards anthology project
contact your Senator about blood-borne BO/halitosis
write to 'the Doctors' TV show
contact the DrHoffman show on WOR710
tell the Office of Rare Diseases about your problem
try the asparagus urine test
Fecal Body Odor Volunteer for media appearances ?
Politicians ?
Ask an expert if they will put up a Q&A section on their websites like Emory have

suggestions

Thinktank

Bluesky ideas to promote thought:

PTC124(Ataluren, or similar) for primary TMAU due to nonsense mutations
Genetically modified probiotics enriched with FMO3 ?
Trimethylamine strip test paper for daily urine testing? (possibly used in the fish industry ?)
BO&Halitosis research center
BO&Halitosis research fund
Can FMO enzyme be induced in a helpful manner ?
Ask an expert if they will put up a Q&A section on their websites like Emory have
BO&Halitosis 'rehab' retreat (?)
TMAU cookbook/advice book
Employ an expert to do the most thorough choline list
Employ Body odor/halitosis expert(s) (?)
Encourage breath-analysis manufacturers to make portable handy analyzers for metabolic odor problems
TMA urine dipstick test
Is trimethylamine an FMO3 inhibitor ?
Campaign : add TMAU to the newborn screening program
Orphan drug program

Send in your ideas or post them on the forums: Contact experts