| If you have experienced discrimination as a result of having Moebius syndrome, parenting a child with Moebius syndrome (or have 'inside knowledge' through your professional work with people having Moebius syndrome or other facial disfigurements), will you please take the time to write a letter attesting to your experiences? While I don't know all the details of this case, it can become a pivotal one for each of us that is affected by Moebius, so your help is greatly needed and much appreciated. Just write the letter to: "To whom this may concern", and state the facts of your discriminatory experience, along with your name and address, phone number, etc. Please send them to Lori Thomas - she'll collect them and serve as a liason if you have any questions about this (I won't be around for about 10 days...). They will be forwarded, UNOPENED, to the investigator responsible for this case. Lori's address and phone number - Lori Thomas 38883 Foxholm Drive Palmdale, CA 3551 (661) 267-2570 |
| Some thoughts about job discrimination... One mother of a child with Moebius wrote ... "Has the person you discussed in this e-mail filed a workers' compensation lawsuit? (Please say yes!) I work for workers' compensation defense attorneys and have seen the "injured party" take the employer to the bank on psyche/discrimination cases. Actually, these types of cases often pay the highest. Unfortunately, this will not heal his/her heart, but in this society, sometimes filing a lawsuit against the employer is our only way of retaliation and punishment. If he/she has any questions, I'd like to try to help. Thanks for your time." ................................................................................................................................... "Genetic Discrimination - need information" (editor's note: The following email was sent in response to the special "MoebiUS" addendum regarding the individual who had experienced job discrimination as a result of being affected with Moebius syndrome. Because that individual was most likely NOT the only one, I am including this email so that anyone else who has experienced discrimination may consider sharing that information with the Genetic Alliance.) "Dear Ms. Goodwick, The Genetic Alliance received an e-mail from you regarding a special edition of your online newsletter MoebiUS. In it, there was a description of an individual who shared with you his/her experience of employment discrimination. The Genetic Alliance agrees that people with genetic conditions should not have to endure discrimination because of their condition. The Genetic Alliance is conducting a study to identify and document incidents of genetic discrimination and privacy abuse. We urgently need accurate, detailed and up-to-date information to understand the personal profile and societal scope of these problems. Consumer coalitions, policy makers, legislators and professional organizations urgently need this information to guide their public policy efforts. We are currently conducting a study entitled: "Genetic Privacy, Discrimination and Informed Decision-making" and was wondering if this individual would be interested in completing our questionnaire and forwarding it to us. The survey can be found on our website: www.geneticalliance.org. Sincerely, Jamie M. Durkovic, M.S." Genetic Counselor, Information Resource Center |
| Have you experienced job discrimination that you believe is related to having Moebius syndrome? Would you consider writing about what happened ... it may help others reading this page to know they aren't/weren't the "only one/s" with such an experience. No names need to be given ... email me - [email protected] |