WE’RE ALL EARS!LET THEM HEAR FOUNDATION EDITION

california

EARINSTITUTE

Hear For YourFuture!

HEADQUARTERS

Palo Alto

1900 University Avenue, Suite 101

E. Palo Alto, CA 94303

Phone: 650-462-3143 Fax: 650-462-3144

San Ramon

5801 Norris Canyon Road, Suite 200

San Ramon, CA 94583

Phone: 925-830-9116 Fax : 925-866-1699

THE LTHF TEAMBoard of Directors

Joseph Roberson, MD, PresidentDale Fuller, Chairman

Kirk DunnLes KoonceJim Pollock

Executive DirectorRob McCleland, Ph.D.

Director of Clinical OperationsTrenna (Teri) Cott

Director of ResearchLisa Tonokawa, M.S.

Director of AdvancementRebecca Highlander, M.A.

Cochlear Implants & Pediatric AudiologyLisa Tonokawa, M.S.

Rebecca Highlander, M.A.Melodie Griffanti, M.S.

Training CenterSpeech Language Therapy

Joy Murdock, M.S.

Advocacy DirectorSheri Byrne, J.D.

AdministrationMonica HellnerPhilip LowtonMonica Greene

Let Them Hear Insurance Advocacy Program Success

Results in Madison Barcellos Receiving Second Cochlear

Implant

4 year-old Madison Barcellos can hear a dog barking, a fire engine, or the screeching wheels of an oncoming car. She can even tell her parents and teachers where the sound is coming from. While this may not sound unusual for a pre-school aged child, it is new for Madison.

Madison Barcellos was born with a profound sensorineural hearing loss as the result of her mother having contracted Cytomegalovirus (CMV) in her first trimester of pregnancy. Madison was immediately identified as being profoundly hearing impaired through the California Newborn Hearing Screening Program, and referred to the California Ear Institute for medical follow-up and the Let Them Hear Foundation for audiology services.

Madison received her first cochlear implant at age 2, after attempts at using powerful hearing aids did not result in significant speech or language development. Post-implant, she began to make immediate gains in speech and language, according to her LTHF audiologist Becky Highlander. Prior to the implant, Madison had a two word

expressive vocabulary – “mama” and “dada”. Within a year of her implant, her vocabulary had grown to 80 words, including several multiple word phrases.

Because of these gains, Dr. Roberson suggested that Madison could benefit from a second implant. Madison’s parents, teachers, and audiologists whole-heartedly agreed. However, Blue Cross, their insurer, denied the request to pay for a second implant, on the grounds that Blue Cross considers bilateral cochlear implants investigational and not medically necessary.

The Let Them Hear Foundation Insurance Advocacy Program undertook an aggressive appeal for Madison, at no charge to the family. Within a month, Blue Cross reversed their original denial, and Madison received her second implant on May 23, 2005.

The Let Them Hear Insurance Advocacy Program has participated in 15 such bilateral cochlear implant appeals in the past nine months. Ten of these implants were for children under the age of 9, and 5 were for adults. There is never a charge to the family for these valuable insurance advocacy services. In each case, the insurance carrier had initially denied the bilateral implant request. In some cases, the insurance plan had specific language in it saying cochlear implants were never covered under

any circumstances. In each of these 15 cases, Let Them Hear Foundation insurance advocates were able to overturn the insurance denials, and the patients received their second implant.

The Let Them Hear Insurance Advocacy Program also provides insurance denial advocacy services in other areas related to hearing impairment, including BAHA devices, hearing aids, external ear reconstruction to repair microtia, atresia repair, and extensions to speech therapy benefits. The program also participates in advocacy for associated school special education issues (IEP and IFSP) affecting hearing impaired children up to age 17.

Recently, LTHF received funding to expand this successful insurance advocacy program nationwide! Beginning Tuesday, January 3rd 2006, LTHF insurance advocates will be taking appeals from patients all over the country who have been turned down by their insurers for hearing impairment related medical and audiology services, not just those patients affiliated with LTHF and CEI. Over 600 families will benefit from this service in 2006 alone.

For more information, visit http://advocacy.letthemhear.org or by calling 877-HEAR HELP.

Volume 3, Issue 3 November/December 2005

HEARING-our advocacy program at work

Page 2 WE’RE ALL EARS

EDUCATION15th ANNUAL SEMINAR ON COCHLEAR IMPLANTS IN CHILDREN

LTHF Hosts Over 200 People at NorCal Cochlear Implant Conference!

On November 4th and 5th surgeons, researchers, educators, parents, audiologists, and speech/language pathologists gathered at the San Jose Hyatt for CI 2005.

The two-day event focused on the theme of “Mainstreaming Strategies.” We explored the kind of collaboration that is necessary to see implanted children “mainstreamed” into every facet of life with their naturally hearing peers. Our research and educational efforts have made this goal a reality for increasing numbers of children.

The national and international conference participants gave overwhelmingly positive feedback, requesting similar future opportunities. Most post-conference feedback related to the excellence and applicability of the information. In partnership with Children’s Hospital of Oakland and the California Ear Institute, next year the annual conference moves to an East Bay location. Be sure to watch for updates, or better yet, email Joy Murdock (jmurdock@letthemhear.org) to make sure that you are receiving information about all of our educational and training events.

ATRESIA MICROTIA CONFERENCE SEES OVER 300% INCREASE IN ATTENDANCE

Atresia (the absence of an ear canal) and Microtia (the deformity of the outer ear) affects as many as one in 6,000 persons in the US, and in some ethnic populations as many as 1 in 900. The lack of an ear canal and properly formed outer ear will cause a conductive hearing loss of up to 60 dB. On October 1st, Let Them Hear held its second annual conference entitled “Surgical Management of Atresia and Microtia” which attracted attendees from all over the United States and even Mexico. Over 40 families attended this year’s conference, which featured the following speakers: Dr. Roland Eavey, Dr. Burt Brent, Dr. Joseph Roberson, Dr. John Reinisch, and Dr. Katrina Stidham.

One of the highlights of the conference for attendees is that children are assessed on an individual basis by all of the presenting physicians. In many cases, this was the first time parents had the opportunity to have their child assessed by doctors who are world-renowned for their ability to successfully correct the conditions causing their hearing loss.

A grant from Medtronic assisted in expanding the conference this year to include Spanish-speaking attendees. Cochlear Corp. (who purchased Entific, the makers of the BAHA device) also made a generous contribution to offset the costs of running this years conference.

CDs of the conference presentations containing files that are playable on any IBM or Mac computer world-wide will be available in December for a cost of $25 for domestic delivery and $32 for international delivery.

Contact Monica Greene at (650) 462-3143 or check the letthemhear.org web site for ordering details.

ECTP: EDUCATIONAL CONSULTANT TRAINING PROGRAM

Foundation Selected for Premier National Training Program

For three years the Oberkotter Foundation and the Children’s Hospital of Philadelphia (CHOP) have combined to offer the Educational Consultant Training Program (ECTP). The program is unparalleled in the world for training deaf educators to understand and service children with cochlear implants. National program director, Dr. Richard Fee of CHOP, was recently asked to expand the program. His first choice for an additional site? The Let Them Hear Foundation! On January 3, 2006, the ECTP launches on the West Coast. We are now reviewing applications of the 6-8 deaf educators we will select for the six-week training program. Each teacher will get full immersion into the world of children with cochlear implants. They will relocate to the Bay Area for the six weeks of their training. The first three weeks will be located at our office and will focus on the surgical, audiologic, and clinical opportunities. The last three weeks will move to the Jean Weingarten School and will focus on auditory/oral education, aural habilitation, curriculum development and other appropriate educational models.

As a national leader in cochlear implant education and research, the Let Them Hear Foundation is privileged to educate thought leaders in the field. We are committed to providing the best services possible. Our participation in the ECTP program is an affirmation of our progress and a confirmation of our dedication to educational excellence. Watch for future updates on this exciting program.

the let them hear foundation is a 501 c(3) non-profit organization that strives to impact or cure disease affecting our patients through cochlear implant and pediatric hearing aid program services in northern california and around the

world. let them hear foundation seeks to share what we have and will learn, produce, and discover with those in need.

BULGARIA 2006Costa Rica, Peru, China, BULGARIA. In 2006 the Foundation will continue its efforts to bring access to current hearing technology to those around the globe with a trip to Sofia, Bulgaria. Earlier this month we were pleased to host Dr. Despotov of Sofia’s Tsaritsa Ionanna hospital. Bulgaria is a small country located in Eastern Europe with a population of about 8 million. Roughly 600 children are born with a profound hearing loss in Bulgaria each year. 100 cochlear implant surgeries have been performed there in the last ten years thus a considerable need exists for more surgeons trained in cochlear implantation as well as qualified individuals to provide programming and rehabilitative services post-implantation. Using the “teach a man to fish” philosophy we will work closely with two teams of surgeons, audiologists and rehabilitation specialists on the ground in Sofia to grow their programs allowing greater access to cochlear implant services

to the people of Bulgaria.

Dr. Joe Roberson will implant a combined five children at the Tsaritsa Ionanna and Military hospitals in Sofia. Additionally, surgeons will have the opportunity to assist as he implants a BAHA (Bone Anchored Hearing Device) in one recipient. An Educational conference is planned early in the week so that local ENT’s, pediatricians, audiologists, speech-language therapists, educators and parents can come together to get accurate and current information.

A wonderful component of our previous mission to China was the number of individuals from our local community without medical or audiology backgrounds that chose to participate. Mission participants often have a soft spot in their heart for helping children and we hope to give attendees of this mission, opportunities to make a difference in the lives of children in Bulgaria. If you are interested in our mission trips and would like more

mission and would like more information about how you can provide support or participate, please contact Rob McCleland at (650) 462-3146 or rmccleland@letthemhear.org.

MIDDLE EAR MECHANICS LABORATORY

In this state-of-the-art laboratory, we conduct experiments in cadaveric temporal bone models to enhance our knowledge about the acoustics and mechanical properties of the external auditory canal, tympanic membrane, middle and inner ear. In addition to studying an intact ear with highly specialized tools such as hydrophone (hydropressure sensor) and laser Doppler vibrometer system, we also test ossicular prostheses (artificial bones) to determine the best reconstructive options for surgical procedures. Mr. Bob Alford generously donates his time to help us with the engineering aspects of the experiments and we look forward to sharing the results of

our MEM research with you in the coming year.

OUTCOMES REASEARCH IN CHINA

This month a small delegation will return to Kunming, China to do outcomes research on the five cochlear implant recipients from our February 2005 trip. They will measure how well each individual is doing with life after a cochlear implant. Physical, audiological and psychological factors will be addressed. We have been receiving regular e-mail updates from Jane Ramsey an adult CI recipient from Texas, who visits Kunming periodically. We are pleased at her recent report on Liu Mei our oldest recipient. Liu Mei has gone from being discouraged initially to talking rapidly and never wanting to quit. She is even able to hear and understand her interpreter Susan who speaks a different dialect of Chinese than Liu Mei. We all wait in anticipation for promising outcomes data from the contingency returning in December.

ACCESSpage 3 WWW.LETTHEMHEAR.ORG

RESEARCH

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(from left to right)Liu Mei, Jane Ramsey, Susan

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Management Team

Joseph Roberson, M.D.CEO and Managing Partner

Katrina Stidham, M.D.Partner, San Ramon

Trenna (Teri) CottChief Operating Officer

Monica HellnerExecutive Assistant

Lisa OlsonDirector

Hearing Device Centers

Rob McCleland, Ph.D.Executive Director

Let Them Hear Foundation

Lisa TonokawaDirector of Research

Let Them Hear Foundation

Rebecca HighlanderDirector of Advancement

Let Them Hear Foundation

Gino LiBeratiManager

Billing/Collections/Contracting

Philip LowtonAccounting Manager

Hyacinth ReyesOffice Manager

Palo Alto

“CRUSH THE SILENCE” GALA A SUCCESSThe Let Them Hear Foundation held our 2nd annual “Crush The Silence” fundraising gala on October 21 at the Thomas Fogarty Winery. Guests were greeted with a “Movie Premiere” theme and received red carpet royal treatment! Personal “celebrity” photos were taken as

guests themselves enjoyed wine tasting. Guests perused silent auction items with stunning silicon valley views from the open air Pavillion deck. The evening concluded with a fabulous meal

catered by Spago’s Palo Alto

restaurant as well as presentations and an exciting live auction. We are pleased to announce that next years gala will be held at the same location on Saturday evening, September 9, 2006. Be sure to save the date for an extraordinary celebration that you won’t want to miss!

ANNOUNCEMENTSBUY FROM AMAZON.COM

A portion of purchases made on Amazon.com® via links on LetThemHear.org go to help fund the Let Them Hear Founda-tion.

By clicking on the Amazon.com® links and purchasing items you are helping the Let Them Hear Foundation continue the H.E.A.R. mission.

Thank you for your support!

Happy Holidays!

ORGANIZATIONAL CHANGES WITHIN THE FOUNDATION

It is our pleasure to update you on organizational changes within the Foundation designed to foster, accommodate and hasten our growth.

Foundation President, Dr. Joe Roberson, has asked Dr. Rob McCleland to spend the majority of his time on Advancement development and fundraising. The opportunities in this area are immense and extra attention is merited if we are to fulfill programmatic dreams. He believes Dr. McCleland’s effort will be instrumental in building LTHF into the world leader among hearing foundations.

Teri Cott will direct our Clinical Services division in addition to her responsibilities as C.O.O. of California Ear Institute. Ms. Cott’s experience and passion are perfect fits for this area. We believe this leadership combination will improve the excellent programs currently in place and build upon the hard work of the LTHF team.