Sibling Support Project
The Sibling Support Project provides training and technical assistance to
agencies and organizations across the United States. The project's goal is to
increase the availability of services for brothers and sisters of people with
special health and developmental needs. Also available is list of dates,
locations, and contacts for upcoming workshops , and ways to contact us for more
information about arranging workshops.
What is covered in training offered by the Sibling Support Project and for
whom is it intended?
The Sibling Support Project offers no- or low-cost state-wide (or in some
instances, region-wide) workshops designed to:
increase family members' and service providers' awareness of issues faced by
brothers and sisters of people with special health or developmental needs; and
teach family members and service providers how to create peer support and
education programs-Sibshops-for school-age brothers and sisters.
International Lesch-Nyhan Disease
Snipped from the Registry Web Page:
The Matheny Institute of Applied Research
is undertaking the task of establishing a Lesch-Nyhan Disease (LND) Registry.
Building on the reputation of the Matheny
School and Hospital as a leader in the care and treatment of individuals
with LND, the Institute seeks to establish a database that will facilitate
communication and the sharing of data among doctors, researchers, caregivers,
and families dealing with this very rare genetic disorder.
Given the rarity of the condition, it is virtually impossible for researchers
studying new treatments or possible cures to contact more than a handful of
individuals with whom to test their theories. Families and caregivers
frequently feel isolated and have no reliable method of obtaining the most
up-to-date information on treatment options, and they frequently have difficulty
finding physicians in their area with knowledge of LND. It is our hope
that the Lesch-Nyhan Disease Registry will help to alleviate some of these
Another link is
This contains details of the Disease in clear, non-jargonese, and is quite
distressing reading. It also holds out a ray of hope for the future,
not yet achieved, but on it's way.
Also listed are more conventional resources such as:
- Lesch-Nyhan Registry
- New York University School of Medicine
- Department of Psychiatry
- 550 First Avenue
- New York, NY 10016
- Phone: (212) 268-3333
- Contact: Lowell Anderson, MD
- International Lesch-Nyhan Disease Association
- 11402 Ferndale St.
- Philadelphia, PA 19116
- Phone: (215) 677-4206
These, and other links, are contained in
New Mobility Magazine
While unsentimental and uncompromising, New Mobility's voice is practical,
knowing and friendly. New Mobility covers people and issues that matter to
people with disabilities: medical news and cure research; jobs; benefits; civil
rights; sports, recreation and travel; fertility, pregnancy and childcare. And
there's a lot more, too.
"Disability isn't all misery or triumph, pity or admiration," says
New Mobility editor Barry Corbet, an award-winning author and filmmaker and
paraplegic for 28 years. "Disability is news, art, politics, humor,
healing, recreation, travel, show-biz and rehab-biz, and that's what we
Landau-Kleffner Syndrome is an illness of youth. It develops
young, about between 4 and 8, and has symptoms that mimic deafness. It is
best diagnosed with sleep tests (EEG's), and will develop into Epilepsy in most
cases. Generally speaking, it will disappear as the child grows.
Howeverr, others have concentrated their efforts on this subject, whilst I
have only brushed aainst it; I therefore cauiously but sincerely refer
you to others who have made a greater study of the syndrome.
D) INTERNET RESOURCES
- The Library of Congress has placed a variety of files on a central
computer for anonymous file transfer by Internet users. ftp.loc.gov
(medicine or medical is the next directory-I forget)
which gives them The Clearing House for subject-oriented Internet resource
which gives them the Medical List
And then there's Medicine Online http://www.meds.com
- Then, there's Stephanie del Sylva's List
of Lists, which aims to have an entry for every mailing list on the
Internet. The Web page is searchable by keywords, or it can be downloaded
via Usenet in 21 parts.
Polio Syndrome and Shufflebrain's
lexicology on it
Leading to The Rollin' Rats Page and The Polio Survivors' Page.
Another good Polio site is Robert Mauro's
National Rehabilitation Centre for the Paralysed (NRCP)
This is a British Centre for those who
have lost muscle tone severely, from (it seems) whatever cause - spinal chord
injury, brain injury, etc.... the list is endless,
The Alzheimer's Association is the oldest
and largest American national voluntary health organization dedicated to
research for the causes, cure, and prevention of Alzheimer's disease and to
providing education and support services to Alzheimer's patients, their families
It was founded in 1980 by seven independent caregiver groups of dedicated family
members. It is officially known as the Alzheimer's Disease and Related Disorders
Association. The Association works through a network of more than 221 local
chapters , more than 2,000 support groups and 35,000 volunteers nationwide.
- Von Hippel-Lindau Syndrome
Hippel-Lindau Disease, abbreviated VHL, is a genetic condition involving the
abnormal growth of blood vessels in some parts of the body which are
particularly rich in blood vessels.
While blood vessels normally grow like trees, in people with VHL little knots of
capillaries sometimes occur. These little knots are called angiomas, or
These angiomas may cause problems, and problems can develop around them. For
this reason they need to be carefully monitored by the medical team.
The word "scleroderma" means "hardening of the skin" and
refers to one of the possible physical effects of the disease. Approximately
800,000 people in the United States have scleroderma. Women are affected three
times as often as men. Although the disease can develop at any age, it most
frequently begins in the middle years. Scleroderma is a chronic and often
In someone suffering with scleroderma, "collagen," a protein
manufactured by the connective tissues of the body, is produced in excess. The
over-production of collagen can be likened to the process of scarring, which is
the way the body heals a wound. However, for persons with scleroderma, the
scarring gets out of hand. This is because the cells that control the production
of scar tissue do not get the proper message that tells them to: "STOP
PRODUCTION!" As a result, the production of collagen is unregulated and
therefore abnormal. Consequently, excess collagen is deposited in various organs
and/or tissues of the body, especially in layers of the skin.
It is important to stress that the symptoms of scleroderma vary greatly from
person to person. It is as though each person with scleroderma has his/her own
version of the disease. Although scleroderma can indeed be serious, most people
are able to live normal life spans with varying degrees of discomfort and/or
This is a good introductory gateway for those with amputations. I-CAN
specialises in Child Amputations, or in children born with limb defects, but has
links to all areas of amputation support. One link that particularly affected me
was entitled "Don't fix me - I'm not broken" and that was the attitude
it portrayed; "I don't need 'fixing'; I'm not 'broken' in the first
I wish I could give this remarkable page more space, but I am truly running
out of space in this page; and the 'simple expedient' of starting another file
promptly means that people miss things because they don't link to it. So my
apologies to the author, and a full recommendation to follow this link.
- E) LISTS ON THE INTERNET
For more information contact FIBROM-L, the fibromyalgia discussion group <firstname.lastname@example.org
with the message Subscribe Fibrom-l Your Name>, read the newsgroup
alt.med.fibromyalgia, or send email to email@example.com.
Name: ADA-LAW Description:
This list is a discussion about any aspect of the disability-related laws.
Bitnet Address: NDSUVM1
Internet Address: VM1.NODAK.EDU
Name: ALS Description:
This is a discussion list for those interested in ALS Amyotrophic Lateral
Sclerosis, or Lou Gehrig's Disease). This list has been set up to serve the
world-wide ALS community. That is, ALS patients, ALS support/discussion groups,
ALS clinics, ALS researchers, etc.. Others are welcome (and invited) to join.
THIS IS NOT A LISTSERV SETUP.
Contact: firstname.lastname@example.org (Bob
Internet Address: BRO@HUEY.MET.FSU.EDU
Name: BLIND-L Description:
Computer use by and for the sight impaired discussion list. This list is
intended to provide a forum for discussion of computer use by the blind and
visually impaired. Topics relating to use of VM/CMS and PCs are of particular
interest, but discussion of other systems is also welcome.
Contact: Daniel P. Martin (dmartin@uafsysb)
Bitnet Address: UAFSYSB
Name: CFS-L Description:
This list concerns Chronic Fatigue Syndrome. The discussions seek to serve the
needs of persons with chronic fatigue syndrome by enabling a broad range of CFS-related
topics. Subscription is open and the list is unmoderated.
Contact: Roger Burns Bitnet: Bfu@nihcu.bitnet;
Bitnet Address: NIHLIST
Internet Address: LIST.NIH.GOV
Name: CYSTIC-L Description:
CYSTIC-L is a free email service dedicated to the exchange of information
and support specific to cystic fibrosis. Since 1994, CYSTIC-L has been
sharing both casual banter about the varied impact that CF has on our
lives, as well as technical and medical information exchanges that help us
to overcome the more unpleasant factors that this silly little gene imposes
upon us. There are over 500 list subscribers sending a total of around
20-60 messages per day; a digest option is available which compiles
messages and distributes them periodically during the day. Members include
people with CF and those who share their lives: medical professionals,
scientists, researchers, parents, grandparents, spouses, siblings, friends
and significant others.
To subscribe send the following line in the *body* of an email (the
"Subject" line is ignored) to LISTSERV@PEACH.EASE.LSOFT.COM
SUBSCRIBE CYSTIC-L Your-first-name Your-last-name
Name:. DEAF-L Description: Discussion list for issues concerning the hearing
Contact: Roy Miller (ge0013@siucvmb)
SIUCVMB Internet Address:
Name: DEAFBLND Description:
Dual sensory impairment (deaf-blindness) is the topic of this forum. The mission
of DEAFBLND is to share information, inquiries, ideas, and opinions The list is
open to professionals in the field, to individuals with DSI, and to their
families and friends.
Contact: Bob Moore (str002@ukcc)
Bitnet Address: UKCC
Internet Address: UKCC.BITNET
Name: DISRES-L Description: This is the disability research list covering any
kind of disability-related research.
Contact: Gary Woodill (fcty7310@ryerson)
Grant Davis (gdavis@utoroise)
Bitnet Address: RYERSON
Internet Address: RYEVM.RYERSON.CA
Name: DOWN-SYN Description:
A listserv mailing list for discussion of Down Syndrome.
Contact: Bill McGarry at (203) 926-6187
Bitnet Address: NDSUVM1
Internet Address: VM1.NODAK.EDU
Name: DSSHE-L Description:
The Discussion group on Disabled Student Services in Higher Education DSSHE-L is
a LISTSERV discussiuon group formed to serve as a communication vehicle for
those interested in the provision of services to students with diabilities in
Name: EASI Description:
Disability Access to Libraries. EASI (Equal Access to Software and Information)
is starting the list to:
1. provide a forum to share questions and answers about how to make libraries
2. provide a platform from which to reach libraries which are not yet
considering seriously the question of access for users with disabilities.
3. provide a platform from which to lobby vendors of electronic library services
to create tools that are already highly acessible.
4. encourage electronic networks and network information services to make their
facilities as accessible as possible to users with disabilities.
5. create and provide services to assist libraries and information providers
with resources to assist them in becoming more disability accessible.
Contact: Dick Banks email@example.com
Bitnet Address: SJUVM
Internet Address: SJUVM.STJOHN.EDU
Comments on this page to Dickibus, on firstname.lastname@example.org
Please mention which page you are writing from, as this site runs several
hundred different homepages, and confusion can be - well, confusing!