MEBO Research 4th Annual Meetup - Memphis, Tennessee

MEBO RESEARCH 4TH Annual Meetup
at Embassy Suites Memphis, TN
May 17th - 19th, 2013

ALL ARE INVITED!

We are most grateful to Nicole and MEBO’s Director of Public Relations, Glenna, for putting together MEBO Research’s 4th annual meetup (2013) at the,

Embassy Suites Memphis
1022 South Shady Grove Road,
Memphis, Tennessee, 38120, USA
TEL: 1-901-684-1777

The meetup will be held on the weekend of May 17th through May 19th, which will coincide with the city-wide barbecue festival,

MEMPHIS IN MAY
WORLD CHAMPION
BARBECUE COOKING CONTEST 2013
See Tweets, "Memphis in May"

that will be taking place on special locations, including Graceland, Stax Museum of American Soul Music, and boat tours on the

Memphis Riverboat tours including Dinner & Music Cruises for $42/Adult, $30/Child 4-12yrs, $10/2-3 yr old. Ör just a Sightseeing Cruise: $17.00/adult, $10/child 4-12, $5.00/2-3yrs old. This event will allow for an exciting vacation for the whole family as well.

TO BOOK YOUR RESERVATIONS:

OPTION 1: Book it directly online at,

Personalized Group Page - MEBO Annual Conference

Group Name:	MEBO Annual Conference
Group Code:	MEB
Check-in:	17-MAY-2013
Check-out:	19-MAY-2013
Hotel Name:	Embassy Suites Memphis
Hotel Address:	1022 South Shady Grove Road
	Memphis, Tennessee
	38120
Phone Number:	901.684.1777

OPTION 2: Please call the hotel directly at,

901.684.1777
and ask for the MEBO Research rate of $142/night*
for either one King bed or two double beds.

Share a room with someone and cut your cost in half, and each person will still enjoy the complimentary extras below!

This rate is also extended up to three days prior to the 17th and three days after the 19th (May 14th through May 22nd), but only if booked prior to April 26, 2013.

Room rates include :

• Complimentary daily full breakfast per person,
• Complimentary nightly 2-hour Manager's Reception, serving free unlimited alcoholic and non-alcoholic beverages and snacks,
• Complimentary Memphis International Airport shuttle,
• Free self-parking,
• All 2-room Memphis hotel suites with refrigerator, coffeemaker and microwave,
• Located just minutes to Graceland and downtown Memphis.
  
  

You owe this wonderful getaway to yourself and your family, so reserve your room now while available during the city-wide barbecue festival! Usually suites with double beds sell out first before suites with single King beds.

*PLEASE MAKE SURE TO BOOK YOUR RESERVATIONS BEFORE THE DEADLINE FOR THE MEBO RATES, WHICH IS ON APRIL 26, 2013. YOU CAN HOLD YOUR RESERVATION WITH A CREDIT CARD, AND YOUR CARD WILL NOT BE CHARGED UNTIL YOU CHECK OUT AFTER YOUR STAY.

NOTE: Travelocity & other travel sites may offer a $3.00 cheaper fare, but it is instant-payment, nonrefundable.


The actual conference part of the meetup will not be as long as usual to allow for more vacation time, though there will be some presentations (yet to be determined), and papers written by experts will be available prior to the short conference to be held Saturday (time to be determined). You are encouraged to read these papers so that you may raise questions and comments during the conference. More information will soon be forthcoming. We usually hold a three to five hour conference on the Saturday of each annual meetup beginning at 12 noon. However, this year, we would like to keep it to not more than 3 hours long (noon to 3:00pm) to allow for more fun time!


Comments on this post are welcome (by clicking on "Post a Comment" below), and tell us what topics you would like to be discussed in the conference part of this meetup.


María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)

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A EURORDIS and NORD Member Organization

Take action to Raise Awareness today, Rare Disease Day!

Please click on this link
See examples below of emails written today.
Please feel free to copy and paste excerpts to create your own.

TODAY IS THE DAY TO TAKE ACTION
AS A UNITED COMMUNITY!

As mentioned in previous posts, our international community at MEBO Research and all sufferers from around the world have been "called to arms" to prepare to join the National Organization for Rare Disorders (NORD) and Eurordis in important advocacy initiatives organized for the Rare Disease Day, today, February 29, 2012. MEBO urges sufferers to take a moment to participate in the two mass email/mail campaigns aimed at the authorities in the US and UK that could be most influential in assisting us in our quest to initiate research and find a cure.

**You may include a link to the TMAU paper written by Dr. Elizabeth Shephard for MEBO Research, http://www.meboresearch.org/Trimethylaminuria%20Paper%20by%20Dr.%20Elizabeth%20Shephard.pdf **

CONTACT YOUR GOVERNMENT OFFICIALS IN THE UNITED STATES:

"In solidarity with EURORDIS and NORD""

By following the easy steps in this virtual tool, you can let your elected officials know that rare diseases are important to you! NORD has provided a sample letter for you, ready-to-go, though we certainly encourage you to take an extra moment to personalize your message and make it resonate.

Once you complete this action alert, your message will be instantly and electronically sent, though you have the option to print and mail your message if you prefer. You may choose to send your message to:
- The President and Vice President of the United States
- The two Senators who represent you in the US Senate
- The Congressperson who represents you in the US House of Representatives
- Your State's Governor and Lt. Governor
- Your representatives in your state's legislature

CONTACT YOUR GOVERNMENT OFFICIALS IN THE UNITED KINGDOM:

This is an example of the email you can send. You can either copy and paste it, or modify it to say whatever else you may want to say:

"In solidarity with EURORDIS and NORD"

TMAU and other foul-odour-producing metabolic/systemic disorders (which, unfortunately, are still un-named) are very highly under-diagnosed conditions. TMAU (and other odour disorders) are considered rare disorders. However, the fact that they are so rarely diagnosed is a key issue. We have contacted you before requesting help with a simple task – raising awareness of TMAU and odour conditions primarily amongst the medical professions. We ask you now, on this day which recognises rare diseases, to reconsider the plight of sufferers of this devastating, invisible disability. If our existence continues to be ignored, research is less likely to occur and a cure will not be found. It is our right to be heard on this day and to protest against the social rejection and dismissive attitudes we face.

Below is a raising awareness petition devised by MEBO Research which can be signed (anonymously) by any individuals who believe that sufferers of odour disorders have the same human rights as other human beings.

http://www.meboblog.com/2011/06/raising-awareness-and-research-funding.html

UK Contacts

Royal College General Practitioners
circ@rcgp.org.uk
chair-circ@rcgp.org.uk
chiefexecutive@rcgp.org.uk
president@rcgp.org.uk
chairman@rcgp.org.uk
vicechair@rcgp.org.uk
chair-scottish-counc@rcgp.org.uk
nedmunds@rcgp.org.uk
chairmanni@rgcp.org.uk
international@rcgp.org.uk
ppgchair@rcgp.org.uk
NSparrow@rcgp.org.uk
rpalmer@rcgp.org.uk
doliver@rcgp.org.uk
pnewman@rcgp.org.uk
swest@rcgp.org.uk

Royal college of Physicians
Humphrey.Hodgson@RCPLondon.ac.uk
education-courses@rcplondon.ac.uk

General Medical Council
education@gmc-uk.org
gmc@gmc-uk.org
publicatons@gmc-uk.org
gmctoday@gmc-uk.org

Media
thismorning@itv.com


Medical Research Council
Linda.Willmott@headoffice.mrc.ac.uk.

NPSA
enquiries@npsa.nhs.uk
queries@nres.npsa.nhs.uk


Health MPs
lansleya@parliament.uk
simon.burns.mp@parliament.uk
dhmail@dh.qsi.gov.uk
anne.milton.mp@parliament.uk

Dental Orgs.
enquiries@bda.org
dentalbranch@dhsspsni.gov.uk
wag-en@mailuk.custhelp.com
fgdp@rcseng.ac.uk
editor@badn.org.uk

USA Infectious Diseases Division Office, Northwestern University
gnoskin@northwestern.edu
Gary A. Noskin, MD Professor, Medicine, Infectious Disease Division at Northwestern University.

Employment accommodations and Vocational Rehabilitation for body odor sufferers

After brainstorming amongst some of MEBO Research's volunteers on the career needs of sufferers, a few brilliant ideas have come forth. I would like for MEBO to initiate some of these ideas sooner than later. The great thing about the position we are currently at is that MEBO’s Public Relations Director has already made contact with staff members of 2 Senators and 4 Representatives on Capitol Hill, and MEBO’s Community Outreach Director has also establish a good rapport with staffers in Michelle Obama’s Office in the White House. Consequently, we are in a very good position to write to the “right people” to promote our agenda. We thank you Glenna and Cheryl. Below are a few of the projects we have been brainstorming about:

1. To establish relations with government and private employment agencies and to set up a program geared toward addressing the needs of sufferers, such as working from home, especially during flare-ups, as in the case of women during their menstrual cycle.
2. To establish rapport with key contacts in the Vocational Rehabilitation Program to establish educational/training projects to help sufferers prepare for, gain or retain employment.
3. After establishing these contacts and commencing new program options for sufferers, MEBO could consider opening an employment placement department, in which MEBO will work with government and private agencies/companies interested in hiring sufferers diagnosed with TMAU, bromhidrosis, or any other odor condition.

Vocational Rehabilitation (VR) is a federal-state program that works with people who have physical or mental disabilities to prepare for, gain or retain employment. VR is committed to helping people with disabilities find meaningful careers.

In addition to the general customer employment program, VR has additional specific programs designed to help eligible people with disabilities become employed.
New Innovation and Expansion Projects (PDF)

In order to carry out this program successfully, MEBO is asking for volunteers who would be willing to submit a brief testimonial of their respective job-related experiences and challenges, and what possible solutions the sufferer believes would have resolved his or her particular problem. If the sufferer believes that the solution would have been a career change, what type of career and training/education would be required for such a change.

In an effort for this project to have a significant impact when we approach politicians and representatives of these agencies, MEBO’s Raising Awareness would need to get at least 10,000 signatures for it to be presented and recognized at a state level. Although we have received 183 in one and a half months, we need to promote it much more, and to ask family and friends to support us with their signature. We’ve gotten off to a great start, but need to push it much further.

I wish to thank all the volunteers who have been so very much dedicated to this cause. More information on this effort will be forthcoming within the next few months.

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)
MEBO Brasil - Blog (Portuguese)

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A EURORDIS and NORD Member Organization