U.S. Congress Passed Genetic Nondiscrimination Act (GINA)
The U.S. House of Representatives passed the Genetic Information Nondiscrimination Act (GINA) May 1st, 2008 by a vote of 414-1. This vote followed the unanimous Senate vote and will be te first legislation to prohibit employers and health insurers fom discriminating against individuals on the basis of their genetic information. The White House has signaled its willingness to sign GINA into law and the signing ceremony is expected soon.
Autism Society of North Dakotawww.AutismND.org.
email: info@autismND.org or call 701-281-8254
advocating support for Autism, please visit http://www.whatkindofworlddoyouwant.com/videos/view/id/408214
Web Resources:
Clothing: http://www.special-clothes.com
Supported Living Services: www.supportedlife.org
Sign Language Vocabulary http://twolittlehands.com and http://www.signingtime.com
Speech Therapy ideas: http://speechtx.com/index.htm
Speech/Language and Feeding Tools: http://talktoolstm.com
Specialty toys - Abilitations: http://www.schoolspecialtyonline.net
Living Spaces - Architectural www.lifecaredesignstudio.com
Advocacy - www.protectedtomorrows.com
Breast Cancer ~ In the News (incl. relationship issue)
Calling ALL Healthy Sister of Those with Breast Cancer: Join the Sister Study! www.sisterstudy.org. Sister study researcher hope the sister of women with breast cancer can play another important role by helping discover how our environmne tand genes affect our chances of developing breast cancer. This Study is a nationwide effort. Women ages 35-74 are eligible who are related by blood by a sister who has breast cancer and live in the U.S or Puerto Rico.
What is EHDI? Early Hearing Detection and Intervention programs are located in states and are designed to identify infants with hearing loss by universal screening. North Dakota has a great ND EHDI program. Check it out at www.ndcpd.org/ehdi
Medcenter One Health Systems is pleased to announce they have been named the Muscular Dystrophy Clinic site for central and western North Dakota. To qualify, you need a diagnosis of Muscular Dystrophy with a referral from your physician. For more information, please call 1-800-932-8758 extension 6176 or 701-323-6176.
DiGeorge Support Group!!! For information as to meeting times and dates, Email 22q11syndromefor2ormoreaffected@yahoogroups.com
The American Academy of Family Physicians (AAFP) has launched a web-based tool designed to recruit motivated consumers who will advocate for the family health issues they care about. The new site, The Family Health Advocate, shares information on issues such as the cost of health insurance and patient-centered medical homes, providing links for consumers to contact their elected officials and tips for making effective contact. Consumers can sign up to receive Action Alerts on issues, as well as a monthly e-newsletter. Go to http://www.familyhealthadvocate.org.
ENDOMETRIOSIS ASSOCIATION (414)355-2200 There is NO known support group for endometriosis in North Dakota, please contact the number listed above for more information.
Click HERE for North Dakota's Newborn Screening publication through the Department of Health
Sibshops in Grand Forks area- will be held the first Saturday of every month at YMCA Family Center from 2p.m.-4p.m. Call Michelle at 772-6191 for more information or go to www.thearcuppervalley.com.
The Multidisciplinary Clinic Program: The Multidisciplinary Program provides comprehensive pediatric evaluations and coordinated care recommendations for children with special health care needs in order to help families effectively manage their child's chronic health condition in the most effective manner. The bolded clinics are sponsored by Children's Special Health Services and are offered at no cost to families. The other listed clinics are sponsored by private healthcare facilities. Contact CSHS Clinic staff for more information Sue Burns 328-4669 or Kora Dockter 328-4854
Celiac disease, also known as gluten intolerance, is a genetic disorder that affects 1 in 133 Americans. For more information for signs, symptoms
or more information to get diagnosed and treated click here.
Children's Special Health Services (CSHS) has provided public information services to improve access to care. To support this effort, we are pleased to refer you to the CSHS website for the updated Resource Library Catalog 2005 Edition. http://www.state.nd.us/humanservices/services/medicalserv/cshs/resource.html
Let's Face It is an information and support network for people with facial difference, their families, friends and professionals. Visit their website for additional information at www.faceit.org. To obtain their online resources , click HERE.
www.PKU.com has taken on the challenge of creating a comprehensive online resource for the PKU community.
Phenylketonuria. An inherited metabolic defect in protein metabolism. In PKU, the liver is unable to convert phenylalanine to tyrosine, resulting in a buildup of phenylalanine in the blood, which eventually passes into the brain, causing mental retardation and other neurological problems.
Great news! Did you know ...Medical Assistance, Healthy Steps and the Caring Program are now all on one application? Access the application at http://www.state.nd.us/eforms/Doc/sfn00502.pdf Or contact the toll-free help-line 1-877 KIDSNOW (1-877-543-7669) for confidential information, applications and screening.
The Arc of Minnesota~ Local Chapter Information~
Please visit www.thearcofminnesota.org/affchap.htm for more information.
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