Please join today's email Raising Awareness Campaign

CHILDREN IN NEED DAY

PLEASE BE A PART OF THIS EMAIL
RAISING AWARENESS CAMPAIGN
You can email from anywhere in the world.

A word from Karen James

I HOPE SOME OF YOU JOIN IN THIS CAMPAIGN TODAY-ESPECIALLY IF YOU LIVE IN THE UK.

Today is Children In Need Day in the UK. Children and teenagers who develop odour disorders are most definitely in need and suffer much more than those of us who developed the disorder as adults.

Nobody will give us a cure without us asking for it, so let's ask for it-it's just writing one e-mail and sending it to the contacts on the list (especially RCGP contacts)

COME ON!!!!

We could all send brief, polite e-mails and letters to the contacts below. My e-mail (less than 200 words) may be something like this:

Although you may have been contacted before regarding raising awareness of foul-odour-producing conditions such as TMAU (Trimethylaminuria), there has been little improvement in the situation for odour sufferers. I write now at a time when Sir Bruce Keogh is encouraging doctors to stay up to date with current developments in medicine.

• Some odour sufferers are still being misdiagnosed or fobbed off by baffled GPs. Sometimes their conditions are dismissed as ‘psychological problems.’
• Despite the fact that many odour sufferers suffer bullying and ostracism, their conditions are not always taken seriously by medical professionals.
• Odour conditions are still taboo disorders: even in the metabolic unit at the UCL Neurology Hospital where many TMAU patients undergo consultations, there are no informative leaflets or posters regarding the condition.
• There are no government-backed initiatives to educate the general public about odour disorders despite the fact that the number of sufferers is unrecorded and ever-increasing (TMAU test requests trebled over the past 2 years).

Thank you so much for reading this e-mail. I hope it results in direct action to address the issues raised. Failing that, could you please forward this e-mail to as many colleagues and medical professionals as you can.

Karen James
MEBO Research Public Relations Director

Another example of what could be written:

You are getting this email because your public service work allows you to do something about the terrible disease TMAU (Trimethylaminuria). You have the ability to help patients!
Many children suffer from TMAU with no improvement in diagnosis, treatment, therapy, and furthering of scientific research.
Sir Bruce Keogh is currently encouraging doctors to stay up-to-date with current medical developments. TMAU is one of them!
Please do whatever in your power to:

• Raise Awareness to General Practitioners
• Raise Awareness to the General Public
• Assist children/patients that have been bullied and ostracized
• Provide informative leaflets and posters about the disease to the general public and in the UCL Neurology Hospital

We need your help to do something.
Now is your opportunity.

---

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

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

THANK YOU ALL FOR YOUR FINE WORK!

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)

Tomorrow, NOV 16th, Raising Awareness Campaign Email Drive

A MESSAGE FROM KAREN JAMES
MEBO PUBLIC RELATIONS DIRECTOR

Gentle Reminder on November 16th:
Raising Awareness

Hi all,

We are making progress as far as raising awareness is concerned, but we can’t expect the general public to know about malodour conditions when the medical establishments don’t.

It is also 'Children In Need' fundraising time in the UK so I will re-word my e-mail to emphasise the fact that many sufferers of odour disorders are CHILDREN and that their social developments are seriously damaged by odour conditions.

In the USA people are sending letters of protest about proposed cuts to funding for rare disorders. Please see MEBO Research website for the NORD letter being sent in protest to these cuts and take action! Our disorders are considered 'rare' and any research to help us will take place under the umbrella term 'rare disorder'.

This is a good time to remind the medical establishments of our presence; for the first time in the UK in 150 years, there will be a legislative change regarding the monitoring of General Practitioners’ efficiency. In view of these changes, which will involve GPs coming under scrutiny, it may be that GPs are prompted into reflecting on their ‘continuing professional development’ and also the manner in which they interact with patients. In light of this, it seems a good time to remind the medical organisations and the health secretary that people with odour disorders not only exist but expect and deserve help.

Tomorrow, on NOVEMBER 16th 2012, we could all send brief, polite e-mails and letters to the contacts below. My e-mail (less than 200 words) may be something like this:

Although you may have been contacted before regarding raising awareness of foul-odour-producing conditions such as TMAU (Trimethylaminuria), there has been little improvement in the situation for odour sufferers. I write now at a time when Sir Bruce Keogh is encouraging doctors to stay up to date with current developments in medicine.

• Some odour sufferers are still being misdiagnosed or fobbed off by baffled GPs. Sometimes their conditions are dismissed as ‘psychological problems.’
• Despite the fact that many odour sufferers suffer bullying and ostracism, their conditions are not always taken seriously by medical professionals.
• Odour conditions are still taboo disorders: even in the metabolic unit at the UCL Neurology Hospital where many TMAU patients undergo consultations, there are no informative leaflets or posters regarding the condition.
• There are no government-backed initiatives to educate the general public about odour disorders despite the fact that the number of sufferers is unrecorded and ever-increasing (TMAU test requests trebled over the past 2 years).

Thank you so much for reading this e-mail. I hope it results in direct action to address the issues raised. Failing that, could you please forward this e-mail to as many colleagues and medical professionals as you can.

Karen James
MEBO Research Public Relations Director

---

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

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

A EURORDIS and NORD Member Organization

A MESSAGE FROM KAREN JAMES
MEBO PUBLIC RELATIONS DIRECTOR

Gentle Reminder on November 16th:
Raising Awareness

Hi all,

We are making progress as far as raising awareness is concerned, but we can’t expect the general public to know about malodour conditions when the medical establishments don’t.

This is a good time to remind the medical establishments of our presence; for the first time in the UK in 150 years, there will be a legislative change regarding the monitoring of General Practitioners’ efficiency. In view of these changes, which will involve GPs coming under scrutiny, it may be that GPs are prompted into reflecting on their ‘continuing professional development’ and also the manner in which they interact with patients. In light of this, it seems a good time to remind the medical organisations and the health secretary that people with odour disorders not only exist but expect and deserve help.

On NOVEMBER 16th 2012, we could all send brief, polite e-mails and letters to the contacts below. My e-mail (less than 200 words) may be something like this:

Although you may have been contacted before regarding raising awareness of foul-odour-producing conditions such as TMAU (Trimethylaminuria), there has been little improvement in the situation for odour sufferers. I write now at a time when Sir Bruce Keogh is encouraging doctors to stay up to date with current developments in medicine.

• Some odour sufferers are still being misdiagnosed or fobbed off by baffled GPs. Sometimes their conditions are dismissed as ‘psychological problems.’
• Despite the fact that many odour sufferers suffer bullying and ostracism, their conditions are not always taken seriously by medical professionals.
• Odour conditions are still taboo disorders: even in the metabolic unit at the UCL Neurology Hospital where many TMAU patients undergo consultations, there are no informative leaflets or posters regarding the condition.
• There are no government-backed initiatives to educate the general public about odour disorders despite the fact that the number of sufferers is unrecorded and ever-increasing (TMAU test requests trebled over the past 2 years).

Thank you so much for reading this e-mail. I hope it results in direct action to address the issues raised. Failing that, could you please forward this e-mail to as many colleagues and medical professionals as you can.

Karen James
MEBO Research Public Relations Director

---

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


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

A EURORDIS and NORD Member Organization

Hello from Cheryl Fields

I have had the pleasure of receiving a phone call from our Community Outreach Director, Cheryl Fields, as she is settling into her new home and job in Wisconsin. She’s working hard, but loving it, though still dealing with the challenges sufferers normally face. She’s facing them like a pro. She is happy there, but misses our community, having been disconnected all this time during her move to another state.


Even though her internet service won’t be up and running until November, Cheryl asked that I write this post, notifying sufferers of her new phone number.

262-764-0737

She looks forward to the calls she receives from sufferers.

We thank Cheryl for her support and wish her the best in her new life.

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)

Why difficulty obtaining employment

MEBO Research's Community Outreach Director, Cheryl Fields, recommends sufferers to read this article in Workopolis entitled, "Why nobody wants to hire you", by Elizabeth Bromstein.

Can't get a job, even though you look in the mirror and what you see looking back is pure awesome?

Here are 15 reasons why people don't want to hire you.

1. You're not a magical renaissance machine willing to work for less than what you're worth.
2. You don't already have a job
3. You're not getting past the bots
4. You aren't qualified
5. You have a stupid email address
6. You're late
7. You lied
8. You're not passionate
9. You look like a jerk online
10. You're lazy about your LinkedIn
11. You lack confidence
12. You're just a bad interview
13. You don't follow up
14. You're inarticulate
15. You're just not likable

Each one of these reasons has a discussion paragraph that is very interesting, that Cheryl and I recommend as a 'must read' to anyone seeking employment. Thanks Cheryl for the heads up.

María

Submitted by:

Cheryl Fields
a.k.a. Dr. StillStanding
Community Outreach Director

A Public Charity
(785)-286-7005 Home/Voice-Mail
www.meboresearch.org
cheryl.fields@meboresearch.org

A EURORDIS and NORD Member Organization

Cheryl Fields' Miami Beach Conference Presentation: Seeking Employment

SEEKING EMPLOYMENT

by
Cheryl L. Fields, MBA, Ph.D. (ABD)
Human Resources Consultant
Founder of The Diversity Project
MEBO's Community Outreach Director

Our dear friend, Cheryl Fields, also known as Dr. StillStanding, gave a very interesting presentation at the our Miami Beach Meetup Conference held on June 23, 2012. Her presentation ignited a very lively group discussion that captivated the full attention of everyone present. The discussion and presentation seemed to potentially go on indefinitely, as it continued well passed the allotted time-frame per popular demand.

Cheryl touched upon the dos and don'ts of job seeking, from writing a résumé 21st century style, to the job interview, to on-the-job and work environment issues. We lightly touched upon employment discrimination law, but Cheryl's 20-page paper that she gives us for our perusal goes into more indepth detail.

We thank Cheryl for her very thought-provoking presentation, and hope she will someday do a video presentation on this topic. A heart-felt thank you goes to all attendees who participated in such a lively discussion. Thank you for sharing this special moment with us.

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)

---

SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.

Please use your credit card to make your donation to MEBO.

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A EURORDIS and NORD Member Organization

Karen James, MEBO UK's PR Director publishes article in the Oxford Journals, InnovAiT

It is with great pride that I announce one of the greatest achievements MEBO UK’s Public Relations Director, Karen James, has accomplished to date - to be published in the Oxford Journals of the Oxford University Press, InnovAiT.


Full Text:
http://rcgp-innovait.oxfordjournals.org/cgi/content/full/ins093?ijkey=bF4nglzYtAz4Cbf&keytype=ref

PDF:
http://rcgp-innovait.oxfordjournals.org/cgi/reprint/ins093?
ijkey=bF4nglzYtAz4Cbf&keytype=ref

My body produces an offensively pungent chemical
Karen James
InnovAiT 2012; doi: 10.1093/innovait/ins093

It was only one year ago, on March 28, 2011, that Karen spearheaded the International Raising Awareness Campaign in the UK medical system calling sufferers from around the world to write testimonials for her to submit to the UK Medical Research Council, the General Medical Council, British Medical Association, Royal College Physicians, and more. Our whole community is very grateful to the many sufferers who participated in this campaign. As a result of this very diligent determination on her part, Karen has accomplished, in only a years’ time, not only to work with UK DUETs, NHS Evidence, National Institute for Health and Clinical Excellence, to publish 10 body odor related uncertainties / questions, now found in the Library of NHS UK database, about the effects of treatment for TMAU, but now she has her own article published in InnovAiT.

This is a perfect example of how a sufferer standing up and taking action can bring about significant change. Imagine what it would be like if each sufferer stood up and took action in his or her own way! We would be well on our way toward finding a cure if this were the case.

An excerpt from this article:

The GP perspective
It is challenging when faced with a patient that you do not know how to
help. The curriculum is vast and reflects the level of knowledge GPs have to acquire, and maintain, over their careers. It is inevitable that you will experience patients from time to time with problems that will stretch your knowledge to its limits. As Karen has alluded to throughout this article, it is important to listen to patient concerns, be open-minded, and be prepared to look things up and/or take advice from both primary care and specialist colleagues if you feel that you are treading on uncertain ground.

A WORD FROM KAREN:
We should never allow ourselves to be dragged down by the scepticism of fellow sufferers regarding ‘raising awareness’ campaigns; thanks to the UK raising awareness campaigns last year, synchronised e-mailing to the Royal College of General Practitioners and follow-up letters and calls, I managed to publish an ‘odour article’ in ‘Innovait’, which is a journal for graduating doctors published by the RCGP.

We all know that unsolicited manuscripts are most often rejected. I was lucky because somebody at RCGP forwarded one of my raising awareness e-mails to the Innovait editors, perhaps with a suggestion that they feature TMAU in an edition of the journal. Without this initial recommendation I think my article would not have been published so it is thanks to all those people who joined me in sending e-mails to the UK medical establishments and thanks to all those people who allowed me to use their true accounts of ‘living with odour’ for the raising awareness campaigns. Also, the sharing of information during the meet-ups was also very helpful so thanks to those who organise the meet-ups and those who attend them. Several months later, we have a small (but significant) result.

The original article had been written for (and already rejected by) newspapers so it was not suitable for a medical journal. However, the editors were incredibly supportive and helped me with the lengthy process of editing, re-editing, rearranging the content of the article so that all emotive adjectives were removed, the underlying critical tone of the medical profession was diminished and a scientific diagram, courtesy of Dr Elizabeth Shephard, was included.

Odour conditions are covered by the UK Disability Act in that you can be classified ‘disabled’ for conditions which adversely affect your day-to day activities.

Although 800 words were cut, I hoped the main points would still be included: the lack of understanding of most GPs and failure to diagnose; the danger of GP’s denying the problem; the need for research into odour conditions; the need for sensitivity and mental health support for younger sufferers particularly; the expense of nutritional supplements for sufferers who are unemployed or under-employed because of the condition.

E-mail discussions with the team of RCGP’s Innovait GPs were very interesting and confirmed:

IF YOU ARE UNEMPLOYED BECAUSE OF YOUR ODOUR CONDITION
Odour conditions are covered by the UK Disability Act in that you can be classified ‘disabled’ for conditions which adversely affect your day-to day activities. It follows that unemployed sufferers in the UK should be entitled to disability benefits.

IF YOU CANNOT AFFORD SUPPLEMENTS AND PROBIOTICS
The GPs questioned the validity of my statement that TMAU sufferers find it hard to get supplements on prescription. They clarified that any GP is able to prescribe calcium supplements etc. (obviously, it can be cheaper to buy certain supplements at the pharmacy if you are employed) and that consultants have the greater power of being able to prescribe virtually anything they consider relevant to the patient’s wellbeing.

CALL TO ACTION:

Imagine what it would be like if each sufferer stood up and took action in his or her own way!

Each sufferer who has not yet been tested for TMAU is invited to print Karen's InnovAiT article and Dr. Shephard's NIH articles on Differential Diagnosis of TMAU, in which the diagnosis of Transient TMAU (intermittent odor) is introduced, noting its very reputable source, and take it to your respective GP to ask him/her to prescribe the TMAU Test. By doing so, not only will you get your test, but you will also carry on the torch of the Raising Awareness Campaign. Even if your doctor tells you that he/she does not detect your odor, Drs. Shephard and Phillips’ article clearly states that it could be transient (intermittent odor – not always present).

In an effort to show strength in unity of sufferers in the UK, this article makes mention of the three primary sufferer support forums/websites that this blog links to on the menubar Community tab, the new UK TMAU Website, Arun's breath and body odour forum, and MEBO's website. On behalf of our international community, we take our hats off to you Karen, for tapping into the medical community on our behalf. We also would like to express our heartfelt gratitude to Dr. Elizabeth Shephard for her contribution to this article and for all she has done for our community. THANK YOU!

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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SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.

Please use your credit card to make your donation to MEBO.

Subscribe for latest posts : Enter your email address:

Delivered by FeedBurner

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A EURORDIS and NORD Member Organization

Message from Cheryl Fields : The Diversity Project

A MESSAGE FROM CHERYL
MEBO Research, Inc.
Community Outreach Director
"Our Background and Philosophy"

It was a few years ago employers were being sued because they didn't hire anyone they perceived gay or transgender, because in the 1980's they thought these employees would bring AIDS to the workplace and the work culture/environment would be ruined? It was during the civil rights era (1954-1963) in the US, where it was actually unlawful to a certain point to even THINK about hiring anyone who was black, African American, or "colored" back then, as the thinking at the time was the work place would be ruined or upset and people would have "panic" attacks by hiring co-workers/peers who were black or African American!

After the tragic events of the 11 September 2001 in the United States, employers, airlines, schools, etc. attempted to discriminate on anyone who appeared to be Muslim?

Recently in Arizona (2010-2012), the unconstitutionality of the new Arizona Immigration Law, which would allow police to stop any person they may find "suspicious" - or have "reasonable suspicion" that the individual is not in this country legally - and ask for the person's immigration papers--and/or anyone who LOOKS Hispanic, Mexican American, Latino, etc. Talk about a WEAK case!

The point is someone has to take a stand for causes, issues, or equal rights. And folks laughed in the 1980's about folks with AIDS or who were gay. Women's Rights (1848 to 1920), were thought to be an insane and laughing matter at the time, until someone stood up and began to fight for the rights of women in the US (and eventually across the world). The late Dorothea Lynde Dix (April 4, 1802 – July 17, 1887) was an American activist on behalf of the indigent insane who, through a vigorous program of lobbying state legislatures and the United States Congress, created the first generation of American mental asylums. During the Civil War, she served as Superintendent of Army Nurses. Folks actually thought Ms. Dix to be a witch, the devil, and/or just plain crazy/nuts! Thank goodness she stood up, because now people with mental illness are usually treated with respect, and dignity. Oh by the way, all of the cases I have stated were thought to be very "WEAK" and even "INSANE" at the time, but history tells us different. Change is slow and takes a continual battle. There are probably more examples many of you may have to share, I just wanted to share a few in this post.

The point is someone has to take a stand for causes, issues, or equal rights.

Just because something is one way, does not mean that it has to stay that way. Thank goodness the late Rosa Parks (December 4, 1955) sat down on the bus in 1955, because of her courageous efforts, I am able to STAND UP and fight for the causes I believe in.

Thank you all so very much gang.

I LOVE having a support group I can turn to at the end of the day and just "vent".

Very Sincerely,


Cheryl Fields
Dr. StillStanding----Somehow
(785)-286-7005, Home/Voice-Mail

Let us join forces with Cheryl in proactively pursuing our human rights to

• Bring about workplace accommodations as a viable option to all sufferers
• To raise social and political movements to establish government assistant programs geared toward enabling sufferers to live a productive and dignified life.
• Change the "human heart and mind" around the world toward understand of body odor and halitosis conditions and towards extending the respect and dignity its sufferers deserve as human beings

THANK YOU CHERYL FOR SPEARHEADING
THIS VERY VALUABLE PROGRAM!

ADDENDUM by Maria de la Torre:

The United Nations Universal Declaration of Human Rights clearly states ethical principles held by most peoples throughout the world. In addition to stating what Cheryl presents above, it clearly depicts the world views on human rights to a "standard of living adequate for the health and well-being of himself and of his family..." Below are a few excerpts from this document.

Article 23.

(1) Everyone has the right to work, to free choice of employment, to just and favourable conditions of work and to protection against unemployment.
(2) Everyone, without any discrimination, has the right to equal pay for equal work.
(3) Everyone who works has the right to just and favourable remuneration ensuring for himself and his family an existence worthy of human dignity, and supplemented, if necessary, by other means of social protection.
(4) Everyone has the right to form and to join trade unions for the protection of his interests.

Article 24.

Everyone has the right to rest and leisure, including reasonable limitation of working hours and periodic holidays with pay.

Article 25.

(1) Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.
(2) Motherhood and childhood are entitled to special care and assistance. All children, whether born in or out of wedlock, shall enjoy the same social protection.

In addition, I would like to quote a member of our community who wrote a post for this blog on November 11, 2008, The Malodorous People's Declaration of Rights by Benjamin Brimmer" in which he states,

When in the Course of human Events, it becomes necessary for one group of People to state their grievances with fellow humankind, and to assume among the Powers of the Earth, the Nondiscriminatory and Equal Station to which the Laws of Nature and of Nature's God entitle them, a decent Respect to the Opinions of Mankind requires that they should declare the causes which impel them to seek such Equality of Rights.

We hold these truths to be self-evident, that all humans are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty, and the Pursuit of Happiness. Throughout History, Humankind has long oppressed and emotionally scarred our fellow Brothers and Sisters, of which are unfortunate Victims of various malodorous Medical Conditions. Prudence will dictate that the Status Quo should not be changed for light and transient Causes; and accordingly, We do not request anything other than an Entitlement Due to all Humans; all people have the Due Right to uphold their Dignity, no matter however Nature and God chose to endow each and every one of Us. Therefore, We the Malodorous People Unite, and firmly assert our grievance; all that We ask for is Respect. To secure these Rights, we the Malodorous People of God's Great Earth, do now state cause for our collective grievance against humanity. Let these Facts be submitted to a candid World.

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)

---

SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online for the holidays
at no extra cost to you.
MEBO gets small commission from Amazon.

Please use your credit card to make your donation to MEBO.

Subscribe for latest posts : Enter your email address:

Delivered by FeedBurner

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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.

Message from Karen James about Rare Disease Day

Karen James; leading Raising Awareness systemic odor campaigner and MEBO Research Public Relations Director in the UK, is once again tying in an awareness campaign with the World Rare Diseases Day on 29th Feb2012.

Below is her message about the campaign. Karen appeared on popular UK mid-morning TV show 'This Morning' last year to raise awareness

Email newsletter from Karen James

Wednesday 29th February is International Rare Diseases Day. It would be good to make our voices heard on this day

I am going to contact all of the organisations from last year’s raising awareness campaigns (who have already been informed about TMAU and its effects) and remind them of our presence. Please join in this effort by doing the same! Below is the gist of the e-mail I will send to them and a list of the UK contacts we targeted last year. It is a good opportunity to e-mail anyone you know with the MEBO Research petition and also to contact organisations in your own country if you are not in the UK. Please add any contacts from outside the UK to the list below and UK sufferers will be sure to support you by e-mailing them as well. You can e-mail most of the contacts using blind carbon copy to save time but I will also send some letters via post as most professional organisations are obliged to reply in writing to any letters received.

The gist of my e-mail:

Karen raises awareness of systemic odor disorders

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.bloodbornebodyodorandhalitosis.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 disease clinic
gnoskin@northwestern.edu


Apologies for those e-mails which do not work. Please add relevant contacts to the list. I have not included online contacts or addresses for written letters but let me know if you would like these also.
Any other ideas?

Kindest regards
Karen

PS. please forward this e-mail to anyone else who may want to take part

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MEBO Research