USAJobs - Federal Government Official Job Site

USAJOBS - The Federal Government’s Official Jobs Site
www.usajobs.gov
This is a United States Office of Personnel Management website. USAJOBS is the Federal Government’s ...

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Employment Resources

Unemployment is one of the most profound issues facing the disability community. NOD is committed to increasing the employment rate of people with disabilities. To help job seekers with disabilities, NOD offers resources specifically addressing employment needs.

Resources and Information

America’s Service Locator
America’s Service Locator connects individuals to employment and training opportunities available at local One-Stop Career Centers. The Website provides contact information for a range of local work-related services, including unemployment benefits, career development, and educational opportunities.

Visit America’s Service Locator.

GettingHired.com
GettingHired.com is a private sector initiative helping to close the employment participation gap for people with disabilities while helping employers meet the challenge of finding qualified workers. It is the largest national employment and networking portal connecting talented job seekers who happen to have disabilities, employers and jobs, agencies providing services to the community of people with disabilities, college and university disability and career services departments, veterans groups and disability advocacy groups.

Visit GettingHired.com.

Hire Heroes USA
Hire Heroes USA provides career placement assistance to returning service men and women, specializing in the career placement of those injured or with any level of disability. Hire Heroes USA has a wide range of employment opportunities available nationwide, ranging from entry level to senior positions.

Visit Hire Heroes USA.

HirePotential
HirePotential specializes in employing people with disabilities, mature workers, and veterans, working with businesses that actively support diversity. You can send your resume using their online tool, or view current job openings on their database.

View the HirePotential Employment Resources.

Job Accommodation Network
The Job Accommodation Network (JAN) provides free consulting services for individuals with physical or intellectual limitations that affect employment. Services include one-on-one consultation about job accommodation ideas, requesting and negotiating accommodations, and rights under the Americans with Disabilities Act (ADA) and related laws.

Visit the Job Accommodation Network.

National Business and Disability Council
The National Business and Disability Council (NBDC) offers resources for career-seekers with disabilities, including links to local resources and webcasts on resume writing and disclosure. You can post your resume in their national resume database or search through job listings.

Visit the National Business and Disability Council.

Office of Disability Employment Policy
The Office of Disability Employment Policy (ODEP) provides national leadership on disability employment policy by developing and influencing the use of evidence-based disability employment policies and practices, building collaborative partnerships, and delivering authoritative and credible data on employment of people with disabilities.

Visit the Office of Disability Employment Policy.

Project Vision
The Project Vision Website is part of the World Institute on Disability's Proyecto Vision, the first National Technical Assistance Center for US Latinos with disabilities. The bi-lingual site offers job listings, success stories, and resource links.

Visit Project Vision.

USA Jobs
The USA jobs website lists positions available within the US government, and individuals with disabilities can use it in conjunction with the Selective Placement Program Coordinator (SPPC) directory. The directory lists the SPPC contact, who helps to recruit, hire and accommodate people with disabilities within each government agency.

http://www.usajobs.gov/
http://apps.opm.gov/sppc_directory/

Search for Jobs

There are a number of national websites that aggregate job listings, allowing users to search for jobs posted around the country. Two examples are Indeed.com and SimplyHired.com.

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Cheryl Fields, MBA, Ph.D., (ABD)/(c)
Community Outreach Director

A Public Charity
www.meboresearch.org
www.brasil.meboresearch.org
cheryl.fields@meboresearch.org
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)

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A EURORDIS and NORD Member Organization 

Online help is vital for rare disease odor sufferers

rare diseases are strikingly similar: on average 7 years to get a diagnosis, lack of specialists, being labelled a hypochondriac, no effective treatments available, and not recognized or understood very well by society.

Tania Tirraoro started the blog, SPECIAL NEEDS JUNGLE, to help parents “who are entering the jungle of special needs education.” In this blog, she shares her experiences as she advocated for her two sons with special needs.

On September 27, 2013, Robert Pleticha, the Online Communities Manager for RareConnect, and columnist for Special Needs Jungle (SNJ) wrote a post in this blog, Why online help is vital for people living with a rare disease you can only smell. In this article about living with Trimethylaminuria, Rob depicts the detrimental psycho-social impact this condition has on sufferers, since TMAU tends to first appear in adolescence, a crucial stage of a person's development.

Rob presents statistics provided by EURORDIS that depicts why TMAU is considered a rare disease.

About rare diseases

A disease is defined as rare in Europe when it affects less than 1 in 2000 people. One rare disease may affect only a handful of patients in the EU, and another touch as many as 245,000. (Source: EURORDIS) Due to under diagnosis and misdiagnosis, we really can’t be sure of the number of people living with many rare diseases. We think of rare diseases as disparate conditions with names like: Epidermolysis bullosa, Dravet syndrome, or Familial Mediterranean fever. But the challenges people living with some of the 6,000 rare diseases are strikingly similar: on average 7 years to get a diagnosis, lack of specialists, being labelled a hypochondriac, no effective treatments available, and not recognized or understood very well by society.

By Robert Pleticha, September 27, 2013

Thanks, Rob, for presenting our case.

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)

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A EURORDIS and NORD Member Organization 

Webinar : Social Security Administration's Compassionate Allowances initiative

The Social Security Administration (SSA), considers TMAU a "severe impairment" listed under section 5.05 in SSA impairments. However; SSA will not grant a disability payment on TMAU alone, rather there needs to be a "mental" disorder as well.

Cheryl L. Fields, MBA, Ph.D. (ABD)
Human Resources Consultant
MEBO US Community Outreach Director

The following is a webinar hosted by the USA charity the National Office for Rare Disorders (NORD)

"On Wednesday, Sept. 18th, NORD hosted a teleconference on the Social Security Administration's Compassionate Allowances initiative. Peter Smith, a policy analyst with the SSA, provided an overview of this initiative and responded to NORD member questions, such as how SSA identifies diseases to add to the list and how patient organizations can provide input in this process."

The webinar can be watched below or on the NORD website : SSA CAL webinar



MEBO Research have previously submitted Trimethylaminuria to be added to the list of disorders on the Compassionate Allowance List, but it was rejected. MEBO are resubmitting a new request for TMAU.

The following is a quote from the accompanying email newsletter sent by NORD about the webinar :

We have received several questions from members on how to add their disease to the Compassionate Allowances list (CAL).  SSA has developed the list with significant input from a series of public hearings and information submitted by advocacy groups, medical and scientific experts, and others.  NIH has provided scientific guidance to SSA in this process.  A primary consideration is whether conditions meet the SSA definition of a disability.  That definition can be found here. On the webinar, in response to a question from a NORD member about how to submit a disease for consideration for the CAL, the SSA team recommended using the format employed by SSA in its impairment summaries of diseases currently on the list. To view these summaries, click on any disease name on the current list of Compassionate Allowances diseases. For example, view the impairment summary for Acute Leukemia. Members who have additional questions after viewing the webinar are encouraged to contact the Compassionate Allowances Team at compassionate.allowances@ssa.gov

NORD website : rarediseases.org

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A Public Charity

MEBO Research

www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)

A EURORDIS and NORD Member Organization 

New Trimethylaminuria research paper

Paper title : Relationships between flavin-containing monooxygenase 3 (FMO3) genotype and trimethylaminuria phenotype in a Japanese population

link : Pubmed TMAU paper abstract

Prof Phillips and Shephard : involved with this TMAU paper

Research lab : Laboratory of Drug Metabolism and Pharmacokinetics, Showa Pharmaceutical University, Tokyo, Japan

Authors : Shimizu M, Allerston CK, Shephard EA, Yamazaki H, Phillips IR

It's quite rare for research papers on trimethylaminuria (TMAU) or flavin mono-oxygenese isoform 3 (FMO3) to be published, so it is interesting to note a new paper by a Japanese laboratory that has a long interest in TMAU/FMO3 colluding with Professors' Iain Phillips and Elizabeth Shephard of London who also have a long interest in the subject. Presumably the Japanese researchers and English researchers have known each other for a long time and collaborated previously. The Japanese lab has been known to offer TMAU urine testing to the public.

Object of the study : Judging from the abstract, the object of the study was to phenotype (urine) test 102 self-reported cases of a malodor problem which semed likely to be TMAU,  and to see if their FMO3 genetic test result confirms the disorder as due to a genetic defect in the FMO3 gene. But interestingly they not only checked the 512 amino acid sequence for the DNA test, but also flanking introns ('junk' DNA) and some upstream sections. Normally for the DNA test the best someone can expect is for their 532 amino acid sequence to be checked, but you can have faults in the introns and upstream parts which can cause deficiency even if the coding part (532 sequence) is normal. This appears to be much further investigation of the FMO3 genetic makeup of a group of TMAU cases than ever before, using a much bigger number of cases.

Special points of interest from the abstract : We do not have a copy of the full paper, and can only make opinions from the abstract. But some points of special interest that stand out are :

They regard the cut-off point for normal TMAO in the urine test as >90%, which is quite a bit higher from some lab testers reference range. For instance the UK Sheffield lab has a TMAO cut-off point at around 79%. Having the cut-off point high at 90% means those in the 80% range will be TMAU positive. However, in the abstract of the paper they later mention they regard the mildest form of TMAU to be in the 73%-83% range, so perhaps at the moment even though they expect normal to be >90%, they may only be prepared to say you are TMAU1 if you are below 83%.

They class TMAU1 cases as severe, moderate and mild. They used the % level of TMA-oxide to class TMAU1 cases as severe, moderate and mild. Severe is a TMAO % of < 43%, moderate is 48% - 70%, and mild is 73% - 83%. In the study, of 102 self-reported cases of malodor, 78 were diagnosed within these 3 categories (presumably only genetic TMAU was tested for). 13 were severe, 56 were moderate, and 9 were mild.

27 gene mutations were found, 15 of which were in the coding region (the 532 amino acid sequence). Of these 15, 8 mutations which caused total or severe loss of function were found at codons 70, 197, 201, 205, 260, 388, 470 and 500. They also found 12 mutations in the upstream section analyzed, which normally would not be looked at in a DNA test. Normally DNA tests only look for either a list of known faults in the 532 sequence coding region, or test all 532 codons. They do not normally test the intron region or upstream region.

Conclusion : Their conclusion for severe FMO3 cases is straightforward. Of most interest is their conlusion about mild moderate cases.

"For moderate and mild cases the situation is more complex, with most resulting from factors other than FMO3 genotype"    

It seems to imply these cases are not due to FMO3 defects, but without reading the full paper nothing can be concluded.

Overall it is an important research paper given the large size of cases involved (102) and the data collected from testing all the TMAU1 cases both from their phenotype (the urine test) and genetically (DNA test). It is probably the biggest such exercise in TMAU cases.
   

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A EURORDIS and NORD Member Organization

Prof Elizabeth Shephard's Radio Show Interview

See Orphanet link to research project

See Research Councils Gateway To Research Site

Pythagoras’ Trousers, The Science & Technology Radio Show
Episode #131, [time frame 0:41 – 12:20]
Program: Fish Odor Syndrome
September 12, 2013
Rhys Phillips

Elizabeth Shephard, PhD
Professor of Molecular Biology
Vice Dean Education, Biosciences
Institute of Structural and Molecular Biology
Division of Biosciences
Darwin Building, UCL Genetics Institute
University College London
MEBO Research Scientific Advisor
Member of the MEBO Institutional Review Board
University College London
Gower Street
London, WC1E 6BT

It [Primary TMAU] is a genetic disorder caused by a bad gene and not because people have bad hygiene.

Professor Elizabeth Shephard, MEBO's Scientific Advisor and Member of the MEBO Institutional Review Board is interviewed by Beth Berry on TMAU, and describes the physical and psychological manifestation of TMAU, and explains the different genetic both Primary and Secondary form of TMAU.

[2:09] “It [Primary TMAU] is a genetic disorder caused by a bad gene and not because people have bad hygiene.”

She also explains the genetics of Primary TMAU. The most affected individuals’ defective genes are passed down from both mother and father [3:31] in the case of homozygous (receive two bad copies of the gene - one from each parent). The milder form heterozygous for the condition inherits one good gene from one parent and one bad gene from the other parent [3:49], but would produce enough protein that the patient would not necessarily have the condition of TMAU.

[4:00] Dr. Shephard also explains the genetics of the Transient Form of TMAU that affects children.

Episode #131, [time frame 0:41 – 12:20]
Program: Fish Odor Syndrome
Click on the following link to listen to the Radio Show Interview

http://www.rhysphillips.co.uk/pythagoras-trousers/episode-131/

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[8:15]Beth Berry: Dr. Shephard tells me that there are research teams currently looking at these viable compounds to be used as therapeutic drugs, but it is not a quick or simple process to produce a treatment, as she explains.

HOW TO RESEARCH A THERAPEUTIC:

Professor Shephard: For any therapeutic, first of all, scientists have to discover a therapeutic, and then has to go through a series called Pre-Clinical Tests to understand the use of that therapeutic; does it do its job properly, make sure that it’s not toxic, and that it could potentially deliver when administered to patients? Then it has to go through a whole series of legislation to make sure that it will be safe. And then, when we talk about Clinical Trials, the therapeutic will be tested in healthy individuals to understand what the therapeutic does and to make sure there are no adverse effects. Only at that point would the therapeutic be permitted to be used for the treatment of individuals with a particular disorder. [9:14]

INTERNATIONAL SUPPORT NETWORK:

[9:15]Beth Berry: This condition is far from easy to live with, and so a support network is incredibly useful to people who suffer from this condition and who find it particularly detrimental. Support networks and websites have been set up where people can find advice on how to manage symptoms or how to explain their condition to friends, family, or co-workers. [9:38] These organizations also aim to spread information about this condition far and wide. As once we become more understanding of this condition, it is also likely that we will become more tolerant of it, and thus ease the suffering experience by patients. [9:52]

there are a number of different mutations, but they all influence the same protein

[9:53] Professor Shephard: We now have the internet, so it is easier to find information on the disorder, easier to take information to a medical doctor should you suspect you have this disorder, in case the medical doctor has not heard about the disorder.
[10:10] If a person does think that they have TMAU, the best thing to do is to consult a medical doctor, and to ask if a urine test could be carried out. A genetic test is something that would really come later and only if the person decides it. So the disorder can be detected by the urine analysis; the genetic test will confirm the mutation that the particular family might carry or that particular person might carry. [10:34] So, there are a number of different mutations, but they all influence the same protein, they just make different changes, some are more severe than others.

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TMAU URINE TEST:

So, by understanding how much TMA there is relative to TMAO gives an indication of how well the enzyme is working.

Professor Shephard: [10:49] The urine test for TMAU tests for the amount of Trimethylamine (TMA) in the urine and it tests for the amount of Trimethylamine N-Oxide (TMAO). [11:00] The TMAO is the chemical that is produced by FMO3. TMAO is the chemical that does not smell and TMA is the chemical that does smell.

[11:07] So, by understanding how much TMA there is relative to TMAO gives an indication of how well the enzyme is working. So the less TMAO would indicate that the enzyme is not doing its job very well, and the more TMAO present, then the enzyme is doing its job better. [11:33]A person can be severely affected and might excrete 90% TMA and only 10% TMAO. Or a less severe person might excrete about 50% TMA and 50% TMAO. And that is really dependent on the individual, and the change in their gene that has affected their particular protein, and its ability to do its job. [12:01]

[12:02] I think we’ve reached the stage of scientific discover where it is now possible to think about the best ways of providing therapy for the patients. [12:14] Different groups will explore different therapeutic possibilities, but we all have the common goal to find a therapy that will help the patients to overcome the symptoms of Trimethylaminuria. [12:24]

See Orphanet link to research project

MEBO UK PAYPAL FOR TRINZYME

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MEBO US PAYPAL FOR TRINZYME

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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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at no extra cost to you.
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A EURORDIS and NORD Member Organization

MEBO talks to US President on NORD Conference Call

As an Organization Member of the National Organization for Rare Disorders (NORD), MEBO was invited to a

Conference call with the President of the United States, Barack Obama, and the Health and Human Services Secretary, Kathleen Sebelius

on Monday, September 16, at 1:40pm EDT to discuss the October launch of the Health Insurance Marketplace. Of course, as members of NORD, our focus will be on how this will affect Rare Disorders, including TMAU and other body and breath odor conditions. Our very own MEBO Community Outreach Director, Cheryl Fields, MBA, PhD (ABD), Human Resources Consultant, was granted a reserved space to join the call to represent our cause.

Our entire international community is most grateful to Cheryl for stepping up to represent us. We look forward to hearing her account of this experience, which will be posted in this blog. The MEBO goal to bring our cause to our political leaders has reached the highest levels in the US government, and I hope that good relationships can be established with this opportunity for future communications. We have reached great heights as an organized community with this opportunity, and we thank NORD for making it happen for us.

Cheryl, remember that you have our whole community praying and thinking of you on Monday afternoon, in camaraderie and support. All the best to you!

María


María de la Torre
Founder and Executive Director

A Public Charity
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)

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A EURORDIS and NORD Member Organization 

Please participate in Halitosis Study

Please participate in the halitosis study conducted by Dr. Murat Aydin, DDS, PhD. Doctor of Philosophy in Microbiology. The instructions and answer form are embeded in this post for your use during the experiment.

NOTE FROM DR. AYDIN: Study participants should smell the same saliva that is first smelled and assessed at the beginning of the experiment. Participants should NOT spit again or smell a new saliva sample during the experiment. If you have done your test incorrectly, please let me know and those results will not be considered. Thank you.

TO SEE SUMMARY OF RESPONSES, CLICK HERE.

Dr. Aydin has helped our international community in many ways, including writing a paper for this year's MEBO Annual Meetup and Conference held in Memphis, TN, entitled, “How can we understand whether halitosis comes from mouth or breath,” which describes the origin of Oral (malodor) Halitosis and Breath (malodor) Halitosis and the differences of their clinical signs. This paper presented excerpts from his book, Halitosis, In: Oral Microbiology,
Aydin M. Aydin M. (2012). Halitosis. In: Oral Microbiology. Aydin M, Mısırlıgil A. editors. Ankara: MN Medical & Nobel, p.97-105.

After listing some of the compounds released in the breath, he adds,

Most of them [the compounds] are end product of lipid, nitrogen, cholesterol, alcohol, carbohydrate, protein or aminoacid metabolism, oxidation of proteins, pancreatic insufficiency, carbohydrate malabsorption intolerance, abnormal gut flora, bacterial gut overload, liver or renal failure, or subclinic trimethylaminuria disease.

Distinction between Oral and Breath Halitosis: Both give similar sign of bad odor in the mouth and/or breath, but the difference is important for both diagnosis and treatment. This handout lists useful tools to distinguish between them, including the three points noted in the MEBO Blog post, "The MEBO Conference and Social Meetup in Memphis," scroll down to section, "HALITOSIS FROM MOUTH OR BREATH."

See handout for additional information.

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María

María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.org
www.meboresearch.org
www.mebo.com.br/ (em português)
MEBO's Blog (English)
El Blog de MEBO (español)

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SUPPORT THE MEBO MISSION: Click Amazon button at right sidebar of this blog when shopping online
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

Rocky Mount, North Carolina Meetup

There will be a meetup in the City of Rocky Mount, North Carolina on:

DATE/TIME: Sunday September 22, 2013 at 2:00pm EST.

LOCATION:
Starbucks at Target
731 Sutters Creek Blvd.
Rocky Mount, NC 27804
252-443-1195

Please send an email to Glenna.gonzalez@yahoo.com with questions.

I always enjoy looking up information about the city where a meetup will be held, and I found this YouTube video.

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A Public Charity

A EURORDIS and NORD Member Organization