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NEWS &
RESEARCH
BEGINNINGS Walk4Hearing Team sets goal to raise $10k
The "BEGINNINGS Brings It On Team" is returning for our third Hearing Loss Association of North Carolina's Walk4Hearing on Sunday, October 19th, at the WakeMed Soccer Park in Cary. Our goal this year is to raise $10,000, which will be used to support the families we serve. Please join BEGINNINGS' team and help us raise funds to help families of children who are deaf or hard of hearing.  We hope to see you there!
3rd Annual BEGINNINGS Spring Gala and Auction
On April 23rd, BEGINNINGS held our 3rd Annual Gala and Auction at The Umstead Hotel in Cary. Our guests were escorted to the ballroom by young ambassadors whose families have been served by BEGINNINGS. For many attendees, this was the first time they had met someone with hearing loss, which led to many special moments. Fourteen-year-old pianist Amadeus Rybinski, one of BEGINNINGS' kids, performed Tetris-Korobeiniki. It was a wonderful opportunity to raise awareness about hearing loss, and the abilities of these amazing children. We are extremely grateful for the support of our honorary chairs, Brad and Carole Wilson, all those who attended the gala and our sponsors and auction donors.  
BEGINNINGS wins grant from Cary Women's Giving Network Gift Fund
We are thrilled to announce BEGINNINGS was awarded a grant in May from the Cary Women’s Giving Network Gift Fund, administered by the NC Community Foundation. These funds are designated for our Grants to Parents program, which provides parents of children who are deaf or hard of hearing the financial assistance they need to pay for technologies and therapies for their children for which no other source of funding is available.
"Celebrate Sound" walk 
 
On June 7, the Raleigh and Capital City Sertoma Clubs held their first "Celebrate Sound" Walk at Lake Benson Park in Garner. The groups chose to donate a portion of the funds raised to BEGINNINGS and the DKW Foundation. Our partnership with the Sertoma Clubs is an exciting new venture. These tremendous volunteers raise awareness about the prevention of noise-induced hearing loss and support families of children who are deaf or hard of hearing. We appreciate Sertoma's contribution to BEGINNINGS and look forward to our ongoing cooperation.
New app transcribes mobile phone conversations
 
A new app, InnoCaption, which transcribes mobile phone conversations in real-time, was recently given approval by the FCC. Consumers who are deaf or hard of hearing will have access to the app for free through the Interstate Telecommunications Relay Services Fund, which supports communications services for people with hearing loss.   For more information visit their website.
Enjoy those fireworks, but protect your ears!
 
Happy 4th of July!  Whether you're shooting off your own fireworks or attending a fireworks show, please keep in mind that the sounds fireworks create fall in the 150-175 decibel range, and can cause permanent damage to your hearing and the hearing of your children. One way to counter this damage is to ensure you and your children wear hearing protection during fireworks displays. It is also recommended that you sit at least 200 feet from where the fireworks are launched. Click here for more information. Now go enjoy your barbeque and festive red, white and blue celebration! 
Researchers identify molecule pivotal to auditory system development

Researchers at the National Institutes of Health have discovered a molecule, Bmp7, which is key in helping the sensory cells find their position on the organizational map of the auditory system.  Bmp7 could assist is the regeneration of sensory cells tuned to specific frequencies.  “Since many forms of hearing loss are limited to specific frequencies, this approach could lead to replacement sensory cells that are tailored to individual needs,” according to James F. Battey, Jr., M.D., Ph.D., Director of the National Institute on Deafness and Other Communication Disorders.  Click here for more information.    
BEGINNINGS
Superstar
Five-year-old Harrison likes to play on his iPad, especially Angry Birds Star Wars 2! He also enjoys playing with his Star Wars toys and watching NC State play sports. Harrison's favorite part of school is doing math, and he likes puzzles. When he grows up he wants to be a doctor and help all the babies who are sick.
Harrison, we think you are awesome and that you will make an amazing doctor! Thank you so much for inspiring us!
We love it when parents share success stories with us.  If you would like to share your child's story please contact Georganne at gsanders@ncbegin.org
 
You can help us continue to ensure positive outcomes for children like Harrison by donating at www.ncbegin.org or by clicking the button below.

 
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The unexpected has
become the expected

From the beginning, life with Harrison Barnett has brought the unexpected for his parents, Becky and Charlie.  Harrison was born with hypoplastic kidneys – meaning his kidneys did not fully develop in the womb and were too small to function normally.  He began dialysis when he was only 16 months old.  In early November 2013, Harrison developed an infection which was resistant to the three antibiotics the doctors attempted to treat him with.  After a month with no improvement in his condition, the doctors put Harrison on two high strength antibiotics, one of which was an ototoxic medication.  Although the doctors informed the Barnett family of potential side effects, including hearing loss, everyone’s focus was on getting Harrison well again.  After only eight days Harrison lost his hearing. Harrison recently received bilateral cochlear implants and is getting ready to start kindergarten in the fall.  His parents shared a little bit about their journey with us and how BEGINNINGS has helped.  
From day one, life with Harrison has been full of the unexpected. No matter how much the doctors try to prepare you, there is no way. Did I mention along the way we welcomed the arrival of his "expected" younger twin sisters born less than one year after Harrison?  
 
Surgeries, G-tube feedings, daily injections, frequent hospital stays, peritoneal dialysis all before his 2nd birthday. Finally, an answered prayer and a kidney transplant came.  What a relief to be off the dialysis machine.  We had several good months of kidney function but soon rejection overtook the kidney and it was back to more surgeries and dialysis all over again.  
 
We were waiting anxiously for another transplant when a major infection, a complication of the dialysis, put that option on hold. In order to properly treat the aggressive infection, a powerful antibiotic had to be used. A side effect of the medication led to Harrison's hearing loss during Christmas 2013. Don't forget what I mentioned earlier ... the unexpected has become the expected.  
 
I couldn't bear this latest hurdle. How could I face the days ahead and not have my sweet boy ever "hear" the words "I love you" from me?  
 
Then I was connected with my BEGINNINGS parent educator and there are no words to express how thankful we are for her help!  She let me know that it would be OK and that he would hear again. She came to our house and showed Harrison the device (a cochlear implant) he would be getting to hear again. She helped him to understand also, even when he was living in a silent world. She kept me calm when the first activation did not go as planned!  
 
Harrison continues to amaze us every day with his positive attitude. He is hearing well in one ear and will soon have the other ear activated. We feel very blessed as a family. We are excited for Harrison to start school again in the fall and be able to hear again in both ears!
Ototoxic meds: 
What you should know

Marisa Ryan, M.D.

The inner ear houses our hearing and balance function. Some medications are toxic to the inner ear sensory cells and cause reversible or permanent hearing loss, balance loss (dizziness) or ringing in the ears (tinnitus). This is called ‘ototoxicity.’ Some medications affect both the hearing and balance system. The hearing and balance loss are not always permanent and partial or complete recovery can occur if the medication is stopped. Sometimes delayed damage can occur several weeks after treatment is stopped. Kidney impairment, loud noise exposure, combinations with other medications and infections during treatment can make the damage worse. These drugs are often used to treat life-threatening medical conditions, so it is not always possible to stop the medicines, and patients and their physicians must make informed decisions about the effects of the drugs and any treatment alternatives.

There are over 200 different ototoxic medications, but these are some of the most commonly prescribed:
 
Aminoglycosides: gentamicin, streptomycin, neomycin

  • These are used to treat life-threatening infections
  • Permanent damage
Cancer chemotherapy: cisplatin, carboplatin, cyclophosphamide, bleomycin, Difluoromethylornithine (DFMO)
  • Treat cancer
  • Permanent damage
Loop diuretics: furosemide (Lasix), bumetanide (Bumex), torsemide
  • Treat heart failure, fluid retention and kidney problems
  • Reversible damage
Analgesics: hydrocodone (Vicodin, Norco, Zydone), Salicylates (aspirin)
  • Treat acute or chronic pain, salicylates also thin blood and treat heart problems
  • Reversible damage
Nonsteroidal anti-inflammatory drugs (NSAIDs): ibuprofen (Motrin, Advil), naproxen (Aleve, Naprosyn), indomethacin (Indocin)
  • Treat pain and inflammation
  • Reversible damage
Anti-parasitics: quinine
  • Treat and prevent malaria
  • Reversible damage

Fortunately, ototoxic medications do not affect all people, but some individuals are more susceptible to damage.  This can run in families. It is hard to predict who is susceptible, so everyone should try to avoid them if possible. If your child must take one of these medications, then there are protocols to monitor hearing and balance before, during and after treatment. Blood levels of some medications should be monitored also. These are helpful questions to ask before starting ototoxic medications:

  • Is there an alternative medication or treatment?
  • Do any of the other medications that s/he takes make the risk of ototoxicity worse?
  • How long will s/he need to take the medication?
  • Can the prescriber and pharmacist double-check the appropriate dosing?
  • What should I do if I think my child is having hearing or balance problems? (Ringing in the ears, repetitive eye movements, stumbling and turning up the TV can all be signs.)
  • How will ototoxicity be monitored? What will we do if ototoxicity is identified?

By being aware of which medications are ototoxic, decreasing their use and monitoring treatment closely, the frequency and degree of inner ear damage can be minimized. 

Reference: Rybak, LP. “Vestibular and Auditory Ototoxicity.” Cummings Otolaryngology – Head & Neck Surgery.  Fifth Edition. 2010. Mosby Elsevier, NY.

Hearing Loss
Awareness Night with
the Charlotte Checkers
In March, BEGINNINGS and the Charlotte Checkers partnered for our 2nd Hearing Loss Awareness Night. 
BEGINNINGS collaborated with Novant Health Presbyterian Audiology and Phonak to award a pair of hearing aids, including ear molds and audiology services, all valued at $3,000, to 6-year-old Xavior who desperately needed them. BEGINNINGS, Novant and Phonak surprised Xavior's family with the news during a presentation in the course of the game. Cam Ward of the Carolina Hurricanes sent autographed jerseys for Xavior and another child served by BEGINNINGS, Luke. Cam and two of his teammates, Jordan and Eric Staal, also sent autographed jerseys for BEGINNINGS to raffle off. Big thanks to the Charlotte Checkers, Novant Health, Phonak, Jordan Staal, Eric Staal and Cam Ward for your support.
My husband and I were truly speechless when we found out Xavior would be receiving a new set of hearing aids.   From the very beginning, when we first learned about Xavior's hearing loss, BEGINNINGS was there to help our family.  That support has continued as Xavior has grown and begun school.  It is wonderful to know that BEGINNINGS is there to help us if needed. BEGINNINGS is a wonderful organization and we are very happy to be associated with it. 
— Emily and David
BEGINNINGS is a 501(c)(3) that supports parents of children who have hearing loss (ages birth to 22) by providing impartial information about communication options, emotional support and technical assistance as they make decisions for their child and family. BEGINNINGS provides support to the professionals who serve these families, deaf parents of hearing children and works to educate all parents and children about the importance of hearing loss prevention.
 
 
Copyright © *2014* *BEGINNINGS for Parents of Children who are Deaf or Hard of Hearing, INC.*, All rights reserved.

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