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NF2 Review
NF, Inc. is pleased to provide current and recent issues of
the NF2 Review, and
would like to express appreciation to its editor, Gail Petito,
for permission to
post the newsletter on this site. Please note that some contact
information in
older issues may be inaccurate; we recommend checking the most
recent
issue for current contact information.
Spring/Summer 2006,
Vol. 13 Issue 1
Spring 2005, Vol. 12 Issue 1 |
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Transcript of NF2 Presentation
Dr. Derald Brackmann
Illinois/Midwest NF, Inc. Fall Symposium
Hamburger University, Oak Brook, IL
October 22, 2005 |
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Daytona Beach Weekend - NF2 Crew Holiday
May 18 - 22, 2005
Some members of the online group, the NF2 Crew, like to travel
a bit. Their latest "adventure" was a long weekend in
Daytona Beach, Florida. Does it look like we were having fun?
Because we were! The weather was beautiful, the timing was perfect
as it was not crowded, and we had a fun weekend at the beach!
On Saturday the group traveled to the home of member Mike Ashley,
who lives in Jacksonville. Mike is a superb cook, and we decided
to make him prove it! He did!! The Ashleys were wonderful hosts,
from their deaf Dalmatian to the colorful parrot - and everyone
had a ball in the pool!
Pictured above: Beverly, Cindy, and Marie on the beach. |
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NF2 Hospital Orientation Packets Now Available
NF, Inc. has put together a packet of information/aids designed
to answer many questions, give tips, and provide -- especially
for the hard of hearing or deaf patient who is about to go to
the hospital -- a little specific assistance.
Included in the packet are many helpful websites, dealing
with everything from disability services, deafness, signing,
patient advocates, and social security denial, to a site where
you can keep everyone with internet access up-to-date on the
patient’s condition with one entry.
There is a booklet entitled, “How to Make the Medical
System Work for You,” authored by Donna Getz. There is
information on Mercy Travel, Angel Airlift, and the Association
of Hospitality Houses, that might be of help if you have to
travel for medical care.
There are even signs for on your door or above your hospital
bed that say “Hard of Hearing” or “Deaf –
Please Sign; Write; Speak Slowly.” There is even a little
sticker to put at the Nurses' Station to remind them you are
deaf/hard of hearing; that way, when you ring the buzzer for
assistance, they don’t come over the intercom and expect
a reply!!
NF, Inc. has distributed this packet to 86 physicians listed
in their NF2 Resource Guide, encouraging the physicians to distribute
this information to their patients.
If you need a copy of the NF2 Hospital Orientation Packet,
please e-mail the NF, Inc. NF2 representative at MarieDrew@nfinc.org,
providing your complete mailing address. It would be helpful
for us to know where you have your surgery scheduled, but this
is not necessary information. If you do not have computer access,
you may phone toll free 1-800-942-6825.
NF2'ers review the Hospital Orientation Packet
at the NF2Con in Las Vegas, April 2005.
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NF2 Con 2005, Las Vegas
Some of the attendees at the Las Vegas NF2 Con in April visited
Red Rock Canyon. They are shown below releasing balloons in
memory of friends who have died from NF2. "It was a very
moving experience and watching these colorful balloons float
away while choking back tears was possibly the highlight of
the trip." The 2005 NF2 Con was supported by generous donations
from the
NF Support Group of West Michigan, NF, Inc., and the NF,
Inc. Mid-Atlantic Chapter. Thank you!!

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Website for NF2Crew
The NF2Crew is a discussion group for individuals with Neurofibromatosis
Type 2, their spouses, significant others, and/or children.The
NF2Crew website can be found at www.nf2crew.org.
You can also subscribe directly by writing to NF2_Crew-subscribe@yahoogroups.com.
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Helpful Websites National Organizations
http://tap.gallaudet.edu
technology information telecommunications
http://www.ncd.gov
Nat. council on disabilities -information on all disabilities
http://clerccenter.gallaudet.edu
Nat. Information Ctr Deafness
http://www.disabilityinfo.gov
Federal information
http://www.cais.com/naric
Nat’l Rehab Info Ctr databases etc.
http://www.asha.org/index.htm
The Am. Speech-Lang.-Hearing Association
http://www.rid.org
National Registry of Interpreters for the Deaf
http://www.nad.org
Nat’l Assoc. of the Deaf and Legal Aid
http://www.nichcy.org
Nat Info Ctr For Children Youth w/ Disabilities
http://www.abledata.com
Able data database of technology, equipment
http://www.hearingloss.org
Self Help for Hard of Hearing People
http://www.hearinghealthmag.com
Hearing Health Magazine
http://www.cfv.org
Captioned Films Videos for Deaf and Hard of Hearing
http://www.wgbh.org/ncam
database on Internet accessibility, resources
http://www.lhh.org
League of Hard of Hearing New York resources, info
http://www.business-disability.com
Matches disabled college grads with jobs http://www.techconnections.org
resources/guides/HI_Catalog.cfm vendors
http://www.captionedtelephone.com
Federal_CapTel_Vet_App.pdf
Legal and Americans With Disabilities Act
http://www.legal-deafhh.org
List of lawyers
http://www.usdoj.gov/
Department of Justice ADA Home
HTTP://JANWEB.ICDI.WVU.EDU
Job Accommodation Network
http://www.adainfo.org
MidAtlantic Region ADA Info Ctr-US Dept Educ
Assistance Dogs
www.KSS.org/ssd/ssd/htm
Susquehanna Service Dogs (Hbg)
www.iaadp.org
Intnt’l Assn Assistance Dogs Partners
www.deltasociety.org
Delta Society info dogs, animals
www.dogsforthedeaf.org
Dogs for the Deaf services national
www.adionline.org
Lists dog programs |
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Dr. Hiroshi Maruta's Presentation
at ALDA Con, Sept. 2004
A transcript of Dr. Maruta's ALDA Con presentation is available
here in PDF format. Thanks to Marie
Drew for providing this information! |
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Fred Getz, 1958-2004
Donna Getz's tribute to her husband. |
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ALDA
Keynote Address: Orlando, Florida "No Longer
Who I Was But Not Yet Who I Will Be"
Michael A. Harvey, Ph.D.
23 October, 2002 |
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