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If you know me, then you know I am a Registered Nurse and love research!! My daughter Jennifer has Velo-Cardio-Facial Syndrome and DiGeorge Syndrome~ abnormality on chromosome 22. Hope these LINKS help you out!
All our challenges are miracles waiting to happen! Remember that! Linda
MY FAVORITES!
Paula's Cool Medical Links!
Family Village
disABILITY Information and Resources
Internet Resources for Special Children (IRSC)
Mental Health Net
Disease Centers
The disABILITY Times - Americans with Disabilities Act (ADA)
An internet list group which has helped me greatly is Our Kids .
Recently a new one to support people and families with VCFS started and you can get the VCFS DIGEST from Paula's VCFS Links!
Agency for Toxic Substances and Disease Registry- CDC
New England Journal of Medicine On-line -- Home Page
American Journal Of Nursing Books Online
THE MERCK MANUAL
My first page of Government & Medical Resources
AND A FEW MORE of My Favorite Med & Government Links!
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VCFS LINKS
I will tell you a little bit...
Velo-Cardio-Facial Syndrome is caused by a deletion on chromosome 22. I have loads of resources because my daughter has this syndrome and it has caused many, many different birth defects requiring mutliple surgeries, handicaps and therapies in the last 17 years. The VCFS DIGEST has been a big help since it was BORN January 27, 1997 thanks to Paula Goldenberg...my cyber buddy! Be sure to tell her I sent you when you visit her pages!
This syndrome is also known by other names, Shpritzen Syndrome, Catch 22, and not too long ago, DiGeorge Syndrome ( a genetic immune deficiency) are all caused by the same deletion on the same #22 Chromosome.
VCFS has many, many possible different "signs"; a few are hearing loss, speech problems partly due to palate or oral abnormalities, skeletal abnormalities, cardiac anomolies, immune deficiency, vision and eye muscle problems, hernias, short stature, microcephaly, mild mental retardation, general developmental delays, seizures, psychiatric disorders at or after puberty, cranial-facial problems , low calcium and I could go on and on. It is autosomal dominate which means that a person who has VCFS has a 50% chance of their own children having the same syndrome~ but the degree of involvement can not be predicted.
Here is a list of great resources for you to look up this syndrome. On Paula's Cool VCFS page you will have many good articles to read about the specific deletion on #22. All these links are quite informative.
The general medical profession is not as aware of this most complex and "common" genetic defect which frequently is misdiagnosed or NOT diagnosed until very late. This just delays appropriate referrals for various therapies and treatment. My daughter was not diagnosed until she was over 14 years old... whew! Been a challenge with MANY joys too!!
VCFS and DiGeorge Links!
VCFS Articles There are many resources at the bottom of this page that aren't listed anywhere else to help you with special needs of many disABLED people.
Genetics Links
WATCH for some personal stories SOON to come!
Good General Search Engines
Find People and Places Search
General Reference Search
Medical Search Engines
SIGN LANGUAGE LINKS
About Sign Language~ My daughter's first language!
Sign Language Links Page Lots of LINKS here!
disABILITIES RESOURCES- medical and educational
Internet Resources for Special Children (IRSC)
Mental Health Net
Disease Centers
The disABILITY Times - Americans with Disabilities Act (ADA)
Disabled Students in Higher Education
EDUFAX- Services for the Learning Disabled Student.
"Life Holds Wonderful Dreams"
EDUFAX - educational consultant / school / college placement / LD.
ADA & Disability Information
TALK LAW: Disability Discrimination in the Workplace
DYSLEXIA 2000 NETWORK
Resources Unlimited for Professionals with Disabilities
Globewide Network Academy Distance Learning Catalog
Internet Resources for Special Children (IRSC)
Pharmaceutical Information Network Home Page
disABILITIES RESOURCES - governmental
disABILITY Information and Resources
Diseases, Disorders and Related Topics
HWDC State Services
Commonly Requested Federal Services
Individual Program Plan
Supplemental Security Income: Q&A
FOR SSI YOU need to look for the specific listings of impairments as described in the ( FEDERAL) SOCIAL SECURITY ACT: Section 1614(a)(3)(A) <--important!
The listings are brokendown to impariments for each major body systems.
THE legal language for the requirement being met when the impairment(s)
1. Meets the duration requirements
2. Is listed in Appendix 1 of Subpart P of Regulations No.4; or
3. Is determined to be medically equivalent to an impairment listed in
Appendix 1 of Subpart P of Regulations No.4 <---IMPORTANT!
[ EVERY SINGLE SSI APPLICATION is automatically denied with few exceptions...
YOU MUST APPEAL several times.....expect it!! Took me 6+ years! Fed Hearing] The criteria is now different if you are under age 18 years.
Social Security Disability BEST- Home Page for SSA and SSI
Commonly Requested Federal Services <--- great source!
HWDC State GRID Home Page
The disABILITY Times - Americans with Disabilities Act (ADA)
ADA & Disability Information
DDS Home Page Federal Mandate for Developmental Disabilities Services!
Supported Living Services- transition to adulthood
Welfare Reform and Medicaid
Medicaid and Managed Care Resource Center
Independent Living transition to adulthood
California our " system" for disABLED
IEP's for school Federal Law- good helper
Supplemental Security Income Federal
Developmental Disability Services Federal
( DDS- FEDERAL MANDATE ) to provide services to the developmentally disabled. Must have one of these qualifying conditions:
1. Cerebral Palsy 2. Epilepsy ( seizures) 3. Downes Syndrome or other with IQ<70 4. Neurological Impairment/Disorder 5.OTHER
Implemented in most states by COUNTIES . In CA called Developmental Disabilities
Center ( DDC - formerly Regional Center )
PROVIDE HIGH RISK Premie Program from birth to age 3 ...Follow to assess and prevent/treat developmental delays...
Coordinate therapy, medical treatment, FUND FOR RESPITE and out of home placement if needed, other interventions....
{ USE FAIR HEARING PROCESS when they deny services...AND AN ATTORNEY WHO is YOUR FREE ADVOCATE FOR YOUR CHILD! I won all 6 times!! USE them}
MediCAL (or medicaid) Federal and State
California Department of Rehabilitation
Being an Advocate for your special needs person.
Locating other CA Agencies
California Government all areas
About CA Dept of Health Services good source!
Commonly Requested Federal Services
ADA & Disability Information
FIND THE SPECIFIC PEOPLE in Government who can help you! http://staffdirectories.com/
Consumer Information from the U.S. Department of Health and Human Services
State and Local Government on the Net ( all states here!)
Disabled Children- U.S.Code Has the Social Security Act
Social Security Administration Online Loads of information whether your an infant or 99!
MEDICAL HEALTH RESOURCES by DISEASE or DISORDER
Paula's Cool Medical Links! the best!!! By body system and nationwide research sources too!
Medical Sites Medicine sites by specialty and has both detailed/complex information for professionals and resources for lay people.
Disease Centers Information by specific disease and body system
Family Village Library Many resources by specific diagnosis or general information with contacts, chat and unusual disorders as well.
Patient Information Resources Various resources plus e-mail disease specific support groups
Clinical Social Work Home Page Health Resources with an emphasis on Chronic/Autoimmune Conditions
RESPITE WEB PAGE- we all need a break!
Thrive@ Health Fantastic Medical Search Engine!
All The Virology on the WWW
EDMUNDS HOME PAGE Great site for all medical professions
Polio and Fibromyalgia Links
Polio Survivors' Page
The Rollin' Rat -- Post-Polio Syndrome
Social Security Manual for PPS
Getting Social Security Benifits
AltaVista Search: Polio
MEDLINE : Post Polio Syndrome 3 abstracts
Fatigue of chronically overused motor units in prior polio patients.
10 Fibromyalgia Web Sites
Fibromyalgia and More Sites
Bob's Page Lots of Fibromyalgia Links and other links too!
PHARMACEUTICAL LINKS
Pharmaceutical links...http://bassas.mit.edu/ok/archive/96=08=12/0012.html
Pharmaceutical Information Network... http://www.pharminfo.com/
Pharmlink ... http://www.pharmlink.com/
MEDICAL LIBRARIES AND RESEARCH RESOURCES
Edmund's Home Page Links to all of the Medical Professions and to other very useful and fun sites
U.S. National Library of Medicine... http://www.nlm.nih.gov/ <----excellent!
Vanderbilt University Medical Center..MAJOR INFO HERE 4 U... http://www.mc.vanderbilt.edu/
Mayo Clinic & Foundation for Medical Education and Research
Virtual Medical Center - Martindale's Health Science Guide Comprehensive resources worldwide for specific organ systems and disease. Has complex medical information available also and medical school courses. [large site]
Virtual Hospital Home Page Resources for patient, health care providers and health science students
Martindale's Reference Desk A must to see. Very impressive!
THE MERCK MANUAL Great reference for diagnosis and specific illness/disease.
GOVERNMENTAL AGENCIES AND HEALTH RESOURCES
National Institute of Neurological Disorders and Stroke with access to NIH and Dept of Health and Human Services- all Federal
Centers for Disease Control and Prevention Infectious disease, immunizations, studies and world wide information
Health & Welfare Agency Data for the USA Government Resources Internet Directory. This system provides a directory of Federal, State and Local government Internet information locations.
U.S. National Library of Medicine (NLM)
National Center for Health Statistics
Food and Drug Administration Home Page The Federal FDA
Commonly Requested Federal Services
Access all Branches of Federal Government from the WHITE HOUSE home page and the Library of congress... http://www.whitehouse.gov/WH/welcome.html
Government of British Columbia in Canada
CONTACT THE WHITE HOUSE!
The only personal addresses at whitehouse.gov are the following:
President@whitehouse.gov
Vice.President@whitehouse.gov
First.Lady@whitehouse.gov
Please write to Mrs. Gore and other White House staff by regular mail.The address:
The White House, Washington, D.C. 20500.
-- On October 20, 1994, President Clinton and Vice President
Gore opened a World Wide Web home page called "Welcome to the
White House: An Interactive Citizens' Handbook" and it remains
one of the more popular spots on the Web. The White House
home page provides, among other things, a single point of access
to all government information available electronically on the
Internet. "Welcome to the White House" can be accessed at:
http://www.whitehouse.gov
-- White House documents and publications are available on the
World Wide Web (see above) and by email. To receive instructions
on retrieving documents by email, please send a message to the
following address:
publications@whitehouse.gov
In the body of your message, type "Send Info" (without quotes);
do not include other text (such as message headers or
signature lines (.sig files)). The instructions will be sent to
you automatically.
****************************************************************
List of Clinton Administration Accomplishments (three documents
compose the whole):
< A HREF:"mailto:publications@whitehouse.gov"> publications@whitehouse.gov.
Message body: send file 317571
send file 317573
send file 317575
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