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13) What organizations can I turn to for more information?




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This article is from the Tinnitus FAQ, by markb@cccd.edu (Mark Bixby) with numerous contributions by others.

13) What organizations can I turn to for more information?

The following organizations all support tinnitus/hearing research and
provide information for tinnitus sufferers. Frequently they are the sole
force behind tinnitus research in their home countries. Joining one of
these organizations in the best thing that you can do so that research
towards a cure will be funded.

Canada

Tinnitus Association of Canada
23 Ellis Park Road
Toronto, ON Canada
M6S 2V4

Co-ordinator: Mrs. Elizabeth Eayrs. A newsletter is available for an $8.00
annual subscription fee.

France

French Tinnitus Association
France AcouphŔnes
La Varizelle
F 69510 THURINS
phone and telefax 78817312
The association publishes a magazine called "TINNITUSSIMO"

[Dues and services presently unknown.]

Germany

DTL (Deutsche Tinnitus Liga)
Postfach 349
D-42353 Wuppertal
Germany
Phone: ++49-(0)202-464584

This organization consisting of tinnitus sufferers and some supporting
medical professionals is one of the biggest ones. Members get lots of
information about medicines, new therapies and the sites which offer them
and and and...

Furthermore you'll get the DTL newspaper named "Tinnitus Forum" four times
a year. The DTL also organizes member meetings and workshops. Detailed info
about the DTL activities and membership (min. 60.- DM per year) can be
obtained by writing to the address written above.

The Netherlands

Landelijk Bureau van de Nederlandse Vereniging Voor Slecthorenden
ter attentie van de Commissie Tinnitus
Postbus 9505
3506 GM Utrecht
The Netherlands
Phone: +31 30 617616
Fax: +31 30 616689

The Dutch Tinnitus Committee operates under the auspices of the Dutch
Society for the Hard-of-Hearing (N.V.V.S.), and has the following goals:

* To gather information about this disorder, and to use this information
to educate the tinnitus patient personally and by regional meetings,
organized by the local N.V.V.S.-department.
* To support the tinnitus patient and try and teach him to accept his
disorder via a network of contactmen spread throughout the country.
* To help these contactmen give advice to others, and to inform them
about the latest developments in the field of Tinnitus.
* To organize local self-help and discussion groups, and to bring
tinnitus patients into contact with fellow sufferers.
* To maintain ties with sister organizations in and outside the country,
and to issue the gathered information to those who are interested in
it.

Spain

ASOCIACION DE PERSONAS AFECTADAS POR TINITUS(Ac˙fenos)
Apartado de Correos n║57
08320 EL MASNOU(Barcelona) Espa˝a

Offers support and information. Membership is: 2500 pesetas per year.

United Kingdom

British Tinnitus Association
14/18 West Bar Green
Sheffield S1 2DA
Phone: (0114) 279 6600

To join the BTA, the subs are 5 pounds sterling UK - 8 pounds sterling
overseas members. The quarterly magazine "Quiet" is inclusive.

They have a number of aims, outlined in the magazine:

* To obtain greater funding of the Med. Res. Council to extend current
tinnitus research
* To lobby for the creation of more tinnitus-only clinics in the UK
* To promote greater acceptance of tinnitus as a handicap in the
granting of employment, disability and other welfare benefits
* To obtain free and universal availability of ear-worn tinnitus maskers
to sufferers capable of finding relief from them
* To obtain a higher priority place for tinnitus in individual hospital
budgets
* To improve the training of GPs to include greater emphasis on tinnitus
management
* To promote stricter control of noise in the workplace
* To aim for maximum sound levels in discotheques
* To have health education programmes to warn of the dangers of
excessive noise, and to have the equipment manufacturers to endorse
the warnings

United States

American Tinnitus Association
P.O. Box 5
Portland, OR 97207-0005
USA
+1 503 248 9985

Funds research, does lobbying, provides information, educates the public,
has a national self-help network, and a professional referrals list by
geographic region that lists ENTs, audiologists, dentists, psychiatrists,
and psychologists that are all well-educated about tinnitus. If you're
searching for knowledgable medical professional tinnitus information, you
might want to start here. US $25 per year, outside US $35/year
(professionals $35 and $50 respectively) check, VISA, MasterCard
(membership will entitle you to a year's subscription of ATA's quarterly
journal, "Tinnitus Today").

A brief history of the ATA and their relationship to the neighboring OHRC
and OHSU as provided by the Oregon Hearing Research Center:

A doctor by the name of Charles Unice, from California, wanted to
know what was being done about tinnitus (he was a sufferer), so
he contacted the National Institutes of Health, who referred him
to our laboratory. The Kresge Hearing Research Laboratory (US, in
1978 or so) was the only place in the United States doing
research on tinnitus funded by the NIH at that time. Unice
decided to found an American Tinnitus Association. Its purpose
would be the dissemination of information about tinnitus, and if
possible, to provide money for research on tinnitus problems.

The American Tinnitus Association was started here in Portland,
in order to be close to the research taking place. There were
some interested citizens in Portland who were willing to help get
it started. It was started under the "umbrella" of the University
of Oregon Medical School (now called the Oregon Health Sciences
University). It was started in Oregon, as opposed to Dr. Unice's
home state of California, because of simpler tax laws here.
Eventually, the ATA became an independent organization from the
Medical School and is now doing quite well. They have offices in
the downtown area of Portland, OR.

In 1985, the Kresge Hearing Research Laboratory became the Oregon
Hearing Research Center. We are the research division of the
Otolaryngology-Head & Neck Surgery Dept. of the Oregon Health
Sciences University. We're located in the west hills of Portland,
above downtown.

Dr. Vernon writes a column for the ATA in their "Tinnitus Today"
publication. Members of the OHRC are often asked to review grant
applications for ATA, as are other researchers in the area of
tinnitus across the country. OHRC staff are also consulted for
information regarding brochures and literature ATA develops. They
refer calls and letters when they cannot provide the answers.

Other than that, OHRC does not have any official ties to ATA. We
are not receiving funding from them at this time (I say at this
time because it is possible we could apply for grant applications
in the future), and they receive no funding from the OHSU nor the
OHRC. Their funding comes from contributions from their members
and combined charitable campaigns.

The OHSU Biomedical Information and Communications Center (BICC)
has taken on as one of their missions to provide internet access
to health providers in the state of Oregon. The ATA, as an
organization who provides health information to the public, was
given internet access by the OHSU. This does not mean that they
are a part of OHSU.

H.E.A.R. (Hearing Education and Awareness for Rockers)
P.O. Box 460847
San Francisco, CA 94146
USA
+1 415 773 9590

This is the H.E.A.R. ad from Bass Player Magazine:

CHANGE THE COURSE OF MUSIC HISTORY

Hearing loss has altered many careers in the music industry. H.E.A.R. can
help you save your hearing. A non-profit organization founded by musicians
and physicians for musicians and other music professionals, H.E.A.R. offers
information about hearing loss, testing, and hearing protection. For an
information packet, send $10.00 to: H.E.A.R. P.O. Box 460847 San Francisco,
CA 94146 or call the H.E.A.R. 24-hour hotline at (415) 773-9590.

(small print at bottom):
Musicians speak out about hearing loss. A promotional video made
exclusively for H.E.A.R., "Can't Hear You Knocking" c1990 Flynner Films, 17
minute VHS, featuring Ray Charles, Pete Townshend, Lars Ulrich and other
music industry professionals spotlight the dangers and effects of hearing
loss. Send $39.95 plus S&H, $5 US/$10 Over seas to: (above address). All
donations are tax-deductible.

(even smaller print):
"CHYK" 57 minute VHS. The Cinema Guild, NY.
"Can't Hear You Knocking" full length 57 minute video documentary is
available through the Cinema Guild of New York, 1697 Broadway Ste. 506 New
York, NY 10019, office: 212-246-5522 fax: 212-246-5525. (Flynner Films,
Stockholm, Sweden).

NIH/National Institute of Deafness and Other Communication Disorders
(NIDCD)
9000 Rockville Pike
Bethesda, MD 20892
+1 301 496-7243
+1 301 402-0252 (TDD/TT for the hearing impaired)

[Services presently unknown]

National Organization for Rare Disorders (NORD)
P.O. Box 8923
New Fairfield, CT 06812-1783
+1 203 746-6518
+1 203 746-6927 (TDD for the hearing impaired)

[Dues and services presently unknown]

Meniere Crouzon Syndrome Support Network
2375 Valentine Dr., #9
Prescott, AZ 96303

[Dues and services presently unknown]

The E.A.R. Foundation
ATTN: Meniere's Network
2000 Church Street
Nashville, TN 37236
+1 615 329-7807 (Voice & TDD)

[Dues and services presently unknown]

Vestibular Disorders Association
PO Box 4467
Portland, OR 97208-4467
+1 503 229-7705 answering machine
+1 503 229-8064 FAX
E-Mail: veda@teleport.com
Web: http://www.teleport.com/~veda

Memberships are US$15 per year. VEDA has about 6,000 members worldwide;
about 2,500 of them are part of a pen-pal network that shares information
individually. We maintain a list of local support groups (about 100 of
these now in North America), a list of physicians and clinics interested in
these disorders, and a list of physical therapists who do vestibular rehab.
We also have a large collection of documents, booklets, and videotapes on
these topics, and we publish a quarterly newsletter.

The Hyperacusis Network
444 Edgewood Drive
Green Bay, WI 54302-4873
+1 414 468-4663
+1 414 432-3321 FAX

The Hyperacusis Network consists of individuals who have a common goal - to
share information and support each other knowing fully well that our
condition at this time is misunderstood and not curable. No one knows more
about our condition than we do. As a network, we work at ways to improve
our condition and educate the medical community about hyperacusis. There is
no membership fee to receive the quarterly network news letter _although
donations are greatly appreciated to help defray costs of paper, printer,
postage, photocopy repairs and long distance phone calls._ Our staff
consists of Dan Malcore as editor. Our supporting editors are people from
all over the world, like yourself, who write into the network. Most have
hyperacusis (sound sensitive), recruitment (sound sensitive with hearing
loss), tinnitus (ringing in the ears), vertigo (dizziness) or Meniere's
disease (combination of auditory problems). Some are from the medical
community who seek to learn and understand. We applaud this since E.N.T.s
(Ear, Nose and Throat) doctors are renown for misdiagnosing our condition,
giving poor advice or subjecting our ears to tests which make our ears
worse. Some in the network are parents of autistic children who seek to
understand why their precious children cover their ears and run from noise.
Autistic children have hyperacute hearing which is somewhat different that
hyperacusis yet our reactions to sounds are nearly the same. We network
with organizations throughout the world like the American Tinnitus
Association, Canadian Tinnitus Association, National Institute on Deafness
and Communications Disorders (NIDCD), Autism Research Institute and H.E.A.R
(Hearing Education & Awareness for Rockers) just to name a few. Many
doctors, audiologists, and health organizations around the world
continually refer people to our network.

Many have found our quarterly newsletters to be an essential tool in
helping themselves and their families understand hyperacusis. For those who
want to become current, all back issues are available for a fee of
US$35.00. If you choose to join the network you can request the 14-page
supplement which explains hyperacusis in great detail.

*****[Other orgs & amp; countries needed]*****



 

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