You haven’t missed anything yet….

Got a weekend day free?  HLAA and The Whole Person will have our movie day coming up on February 18th!

Free movies are awesome and we’ll have a captioned film of Mr. Holland’s Opus set up for your viewing pleasure, along with some water and popcorn.  Bring some snacks if you would like.  Come on out to the Prairie Village office of The Whole Person for a big screen viewing!

Saturday, February 18, 2012 – Doors open at 2pm
Captioned movie of “Mr Holland’s Opus

Map: The Whole Person – 7301 Mission Rd., Building A, Suite 135 , Prairie Village, KS 66208

Please RSVP so we have enough seats and supplies!  Either email us at hlaakc@gmail.com or join the Facebook event!

http://www.facebook.com/hlaakc

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Happy Super Bowl Sunday! Miss Deaf America Ambassador will sign the national anthem…

So, it’s practically the next great American holiday – Super Bowl Sunday, where National Football League (the football with shoulder pads and touchdowns, not the footy-ball with shin pads and goalies) takes over Sunday and Americans watch to see who is the champion for this past year’s season. Personally, while I like football well enough, I try not to get caught up in the hype and end up doing other things like watching the Puppy Bowl.

The game this year will be held in Indianapolis, Indiana.  For those of you who haven’t been following some political events in Indiana, there’s a hullabaloo going on over a bill numbered HB1367.  Without touching on some of the more controversial parts of the bill, the summary is that responsibility for outreach for deaf education to children in Indiana would be moved from where it currently is at Indiana School for the Deaf to a supposedly more neutral organization that would better be able to present options to families.  I want to make it clear that HLAA has not taken a formal stance on the bill, but I personally am watching the outcome closely to see what to expect going forward.

So, anyway, controversial bill aside, there is a national spotlight on hearing loss with the super bowl – the current Miss Deaf America Ambassador, Rachel Mazique, will be signing the national anthem before kickoff at 5:30pm CT today.  I believe that the National Association for the Deaf teamed up with Pepsi to make this happen, so excellent stuff!

Have fun today!

Sign Language class results

Sign language is such a pretty language – even as beautiful as it is, it still can be quite a challenge to learn it and communicate well with it. To that end, this past week HLAA-KC provided an exploratory workshop on ASL or “American Sign Language” to gauge the level of interest in providing sign language classes. The outcome was that a large number of people reserved a seat and showed up on a Thursday evening at the Overland Park Central Library, from 6:30pm to 8:30pm.

HLAAKC sign language meeting

There were about 22 people who attended the class – not bad! Sarah Mosher and Alex Vetor from HLAA started off by giving an introduction to what ASL is, and then proceeded to teach the ABCs then some basic signs like “who,” “what,” “when,” “where,” “why,” and “how.” Every 20 or so minutes, the class would practice communicating to each other while Sarah and Alex observed, assisted with corrections, or answered questions about proper usage. After the class had a good grasp of the signs, then more were added. The class culminated in a game of “phone tree” where groups of 5 were split up and had to sign a message from the instructor in a line from beginning to end. The person at the end had to sign the message correctly or answer the question in the message.

HLAA KC Sign language meeting 2

In all, it was a fun night and it sounded like a lot of people enjoyed the class. HLAAKC will evaluate if we will have future sign language classes and let the community know. Thank you all for coming!

1 in 5 Americans have hearing loss – new study findings

CNN posted online tonight about the findings of a recent study on hearing loss published in the Archives of Internal Medicine.  Over 48 million Americans have hearing loss in one or both ear, the study concludes.

http://thechart.blogs.cnn.com/2011/11/14/hearing-loss-affects-1-in-5-americans-study-finds/?hpt=hp_t2

The last estimates I encountered were 1 in 10 or so, equaling some 28 to 36 million Americans with hearing loss.

A great article about hearing loops

I came across a great article about inductive hearing loops in America, mentioning famed composer Richard Einhorn’s struggle with how difficult it was to be able to enjoy theatre and musicals with inferior assistive device systems.  Hearing loops provided the clarity and enjoyment he so desired.

(Note: New York Times has limited access to their articles online, so the link may ask you to sign up for a subscription, or tell you have temporary access to their articles).

http://www.nytimes.com/2011/10/24/science/24loops.html?_r=2&hpw

HEARAid Gala 2011

There’s a fantastic fundraiser set for November 18 at the Hyatt Regency/Crown Center presented by the Midwest Ear Institute.  HEARAid Gala 2011 “The Best of Broadway” features a night of Tony Award winning songs produced by Anthony Edwards.

The night is to fundraise to assist programs like the “Ear That Hear” service that assists Midwest Ear Institute patients who cannot afford services or whose insurance does not cover services or equipment for children or adults who are deaf, hard of hearing or who experience balance disorders.

The evening consists of a reception, silent auction, a dinner prepared by Chef Frank Majowicz, and a live auction.  Once that’s all done, then the musical revue begins.

Tickets can be purchased or donations can be made online at http://www.saintlukesgiving.org/HEARAid.  If you have questions about HEARAid, you can reach Irwin Herrero at 816-932-1660.

I think it’s important to support the community with charities and foundations like this to enable everyone to reach their full potential no matter what financial or health barriers they have.  Low income families and families without insurance have a difficult time getting equipment like hearing aids when they are needed by children with hearing loss.

PROMISING RESEARCH – Cord Blood Stem cell treatments for hearing loss

This was in a recent HLAA e-newsletter sent out to all members:

Promising research has led to the first clinical trial to evaluate the safety of cord blood stem cell treatments for hearing loss. According to a study published in Cell Transplantation, animal subjects treated with cord blood stem cells showed significant healing to the damaged sensory hair cells and neurons in the inner ear. Dr. James Baumgartner, pediatric neurosurgeon, and colleagues at Children’s Memorial Hermann Hospital in Houston will launch the first FDA-regulated clinical trial evaluating the use of cord blood stem cell treatments for children with hearing loss.

The year-long study will follow 10 children, aged six weeks to 18 months, with acquired or congenital (but not genetic) hearing loss. The trial will be selecting only patients who have stored their cord blood with CBR for this trial, to ensure consistency in the stem cell processing, storage and release for infusion.

Watch the video on this research. YouTube has it captioned but you have to activate the caption button. CBR is having the video captioned with the exact transcript; however, until then, the YouTube captions will be in place.

——————–

In my opinion, this is good news – more research into avenues of restoring hearing and correcting hearing loss will benefit many.  Even if cord-blood stem cell treatments themselves are not the final solution, lessons learned about our genes and biological makeup will make it easier to find solutions that may not need cord-blood to begin treatment.  To understand what cord-blood means, check out this article: http://en.wikipedia.org/wiki/Cord_blood

CBR is “Cord Blood Registry,” a business that stores the umbilical cord blood (and optionally the umbilical cord tissue) in freezing banks for potential future use.  This requires a processing fee and an annual storage fee.  As of today,  to store your child’s cord blood until they are 18, it could cost you between $4,000 to $7,000.

Captioned movies this weekend:

Several movies up this weekend:

Regal Cinemas Stadium 18 theatre is featuring:
“One Day” with open captions: PG-13, select dates and times from 8/26 to 8/29
“The Help” with open captions: PG-13, select dates and times from 8/30 to 9/5
Exact showtimes are available here: http://www.regmovies.com/nowshowing/opencaptionedshowtimes.aspx#MO

AMC is providing quite a few closed captioned movies at 5 theatres throughout Kansas City.  To find a showing near you, input your zip code and the date you wanna catch a flick here: http://www.amctheatres.com/AssistedMoviegoing/

Have a great weekend, everyone!

Transport Security Administration (TSA) Disability Notification Card

A number of you who attended the recent HLAAKC meeting asked about the TSA Disability Notification Card that was mentioned during the HLAA conference.

Here’s a link to the page on TSA’s advice to Travelers with Disabilities:

http://www.tsa.gov/travelers/airtravel/specialneeds/index.shtm

At the bottom of the page, there’s a link to the TSA card that you can print out and fill in: Click here to download the Disability Notification Card for Air Travel (pdf, 69kb).

Happy travels!

Free Friday Night Flick event – July 29

Read original post.

I can’t wait for this Friday’s social event!  The kind people of the Crown Center are graciously going to turn on the captions for one of the video screens at the Free Friday Night Flicks!  It will be the lower screen and will be next to the Ice Terrace in the Crown Center Square.  We’ll set up on that side, and have a sign up for people to find us and congregate!  See the map:

Map of where to meet up for the HLAA group on July 29 2011

Map of where to meet up for the HLAA group on July 29 2011

Meet up in the seating area, we’ll be there at 8pm!  Bring your own lawn chairs, picnic blankets, snacks, beverages (no glass bottles).  The Harry Potter and the Sorcerer’s Stone movie will start at 9pm!  See you there!

HearLIFE event wrap up

And the event is over!  I should have done a proper wrap up yesterday, so here it the summary:

On Saturday, 7/23/11, Med-El hosted a HearLIFE Expo at the Marriott in Overland Park, KS, with 3 speakers, a couple of Cochlear Implant audiology and surgery exhibitors, and a few event promoters.  Approximately 20 people attended, and the event was captioned as well as the room was looped; attendees who had t-coils in their cochlear implant(s) or hearing aid(s)  could activate the t-coil and eliminate all environmental sounds and focus solely on the speaker with the microphone.

The event lasted about an hour and a half and the 3 speakers were interesting and engaging.  They touched on a variety of hearing related issues, then drilled down into why choosing Med-El as the cochlear implant of choice was important.

After the event, I spoke with the outreach manager, Christine Pett, about her son and about her experiences growing up with a child who has hearing loss.  I’ll have a follow up article on that within the week.  She is greatly interested in speaking directly with our group so we’ll plan to have her come out to Kansas City sometime in 2012.  She mentioned that there were things potentially completing FDA (U.S. Food and Drug Administration) approval that she’ll be able to announce next year.  She is based in St. Louis, MO and can be reached at christine.pett@medel.com if you have any questions.

I also talked with surgeons from both the University of Kansas Hospital and Midwest Ear Institute, Dr. Staecker and Dr. Cullen, respectively.  Both are experienced surgeons, and I wanted to follow up on some research that Dr. Staecker was doing that he talked about at the HLAA conference in 2009.  His research involves regeneration of certain parts of the inner ear and he may be getting close to FDA approved trials.  That sounds very exciting and I know a number of our members have asked about regeneration and things involving genetics and stem cells, so I thing having Dr. Staecker give a presentation would be very beneficial to our chapter.

That’s it from this event – if you want a recap of all the micro-blogging done during the event, I’ve linked them all below!

https://hlaakc.com/2011/07/23/hearlife-expo/

https://hlaakc.com/2011/07/23/hearlife-blogging/

https://hlaakc.com/2011/07/23/speakers/

https://hlaakc.com/2011/07/23/hearlife-implantable-hearing-technology/

https://hlaakc.com/2011/07/23/hearlife-expo-hearing-loss-and-cochlear-implants/

https://hlaakc.com/2011/07/23/hearlife-expo-what-is-a-cochlear-implant/

https://hlaakc.com/2011/07/23/hearlife-expo-cochlear-implant-criteria/

https://hlaakc.com/2011/07/23/hearlife-expo-what-to-expect-during-ci-surgery/

https://hlaakc.com/2011/07/23/hearlife-expo-ci-benefits/

https://hlaakc.com/2011/07/23/hearlife-expo-and-guest-speaker/

https://hlaakc.com/2011/07/23/hearlife-and-med-el/

HearLIFE and Med-El

Christine, the Med-El representative from St. Louis, spoke about her experiences as a mother with a deaf child.  Her son, Dylan, became deaf at 1 due to spinal meningitis, and just turned 18.  He wore hearing aids and was schooled at an oral deaf school that did teach some sign language, but then the hearing aids started not working and they had to go to sign language only for a short time.  That was around when he was reading and writing and communication was starting to get difficult.  He eventually told his family that he wanted to hear and that he wanted a cochlear implant.

HearLIFE Expo and Guest Speaker

Kristin Matta is from Colorado Springs and has a son who was implanted at 3 1/2, is now 12, and has a CI. He had two hearing aids growing up and kept struggling to hear, she felt he was working too hard to hear. Cochlear implants were an option but she felt she had some misinformation, such as the size of the cochlear implant body processors, or static discharge. She talked to many many people, maybe over 100 people, just to be secure in her understanding of it being right for her son.

She really praised Med-El’s customer service, she would have a broken cable at 7:30pm on a Friday of a 3 day weekend, and Med-El was there and able to take care of things with her, so she is grateful for that choice.

They showed a video of Garrett, her son, talking about his love for sports, and dogs. He says the CI is so amazing and it’s made a big impact on his life, he wouldn’t be able to hear and talk to us on the pre-recorded video right now. He goes to school in Colorado Springs middle school and he hears the teachers pretty well.  He wears his implant while playing sports, he hears on the phone and cell phones, with no special equipment, he enjoys music and his big challenge is sometimes with background noise, in the classroom can be a challenge, or in a restaurant.

His mother feels that her son has his expectations set really high and

He won’t take off the CI – he wears it even in showering rain with soccer, his mom had a conversation with him just last week about that and he said he’d rather stop playing than take off his CI.

Her husband did some things to his helmets to help make it fit with the CI better – baseball and biking helpmets.

He does take it off when he goes swimming, but many times when he gets wet it’s water resistant.

He is not bi-modal, he prefers his lone CI.

He was not bi-laterally implanted because it was not standard at the time, and we kept just putting off, like if he’s doing bad in school, we’ll get a second one, or maybe one is cool, two will socially stunt him, things like that.

HearLIFE Expo – CI benefits

Things you can generally expect to have an improved experience with after implantation and activation:

Hearing environmental sounds (birds chirping, cars driving, flip-flops flopping)
Speech perception and comprehension
Improve your own speech clarity
Hear more while in noisy situations
Use the telephone
Music appreciation