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

Transcript of NF2 Presentation
Dr. Derald Brackmann
Illinois/Midwest NF, Inc. Fall Symposium
Hamburger University, Oak Brook, IL
October 22, 2005

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.

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!!

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.

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

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!

Donna Getz's tribute to her husband.