We're Partnering With The Mighty!

By Benjamin Sherman

We're thrilled to announce a new partnership that will bring Hearing Health Foundation’s (HHF) resources in front of The Mighty's wide-reaching readership. HHF is excited to share with you our partner page on The Mighty and our logo will appear next to many stories on the site.

For those who don’t know, The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

HHF is dedicated to helping people with hearing loss, tinnitus, and other hearing conditions live their lives to the fullest. With this partnership, we'll be able to help even more people.

Interested in partnering with Hearing Health Foundation?

Learn more here: http://hearinghealthfoundation.org/become-partner

HHF's Field Trip to NIDCD's New Research Center

By Nadine Dehgan

Nadine Dehgan, HHF's CEO

This August, I had the pleasure of visiting the National Institutes of Health (NIH) and attended a laboratory tour hosted by the National Institute on Deafness and Other Communication Disorders (NIDCD), which is one of the 27 Institutes and Centers that makes up the NIH. Organized by the Friends of the Congressional Hearing Health Caucus (FCHHC) and in the company of a select group of individuals including Congressional staff members, other hearing organizations, and NIH staff, we first met in the Porter Neuroscience Research Center in Bethesda, Maryland. The research center’s name honors former U.S. House of Representative member John Edward Porter, a huge supporter of biomedical research. He was largely responsible for leading the charge to double the NIH budget from 2003-2011. Rep. Porter was also the vice chairman of the Foundation for the NIH, and still holds many other public service roles.

James Battey, Jr., M.D., Ph.D., the NIDCD Director, reviewed NIDCD operations and showed how the research funding supports seven mission areas in hearing, balance, taste, smell, voice, speech, and language.  He also mentioned the recently released National Academy of Sciences (NAS) Hearing Health Care Consensus Report (whose recommendations HHF supports). Dr. Battey was warm and approachable and accompanied the visitors throughout the tour answering questions.

Andrew Griffith, M.D., Ph.D., the NIDCD Scientific Director and Chief of the Molecular Biology and Genetics Section, provided us with a detailed explanation of the NIDCD’s intramural research program.  “Intramural” refers to the internal research conducted on the NIH campus and usually is only 10% of an Institute’s entire budget.  Dr. Griffith underscored the benefits of this unique funding environment that allows the investigators to conduct both long-term and high-risk, high-reward science that would otherwise be difficult to undertake in academia and private industry.

The NIDCD is one of ten neuroscience Institutes with labs housed in the newly constructed Porter Neuroscience Building.  Prior to the building’s construction, these labs were spread across eight separate locations. Now, the labs are organized by scientific research topic to allow researchers to share resources and allow for easy collaboration.  Research includes basic and clinical neuroscience research, including investigating Parkinson’s and Alzheimer’s. (See the detailed listof topic areas that comprise more than 800 scientists in 85 labs.)

The facilities are bright, state-of-the-art, and energy efficient. It is the most energy-efficient science lab in the entire world! It uses solar panels, geothermal wells, and has a special chilled beam air-conditioning system that requires a fraction of energy regular systems use.  At 50,000 sq. ft, it is also one of the largest research buildings in the world dedicated to studying the brain.

Doris Wu, Ph.D.(Slide images from Bissonnette & Fekete, 1996; Morsli et al, 1998)

The tour took us to the labs of Doris Wu, Ph.D., Chief of the Sensory Cell Regeneration and Development Section, who discussed her studies of the development of the inner ear in mice and chickens, in particular her work to identify the molecular processes involved. Dr. Wu is also a member of HHF’s Scientific Advisory Board, which provides oversight and guidance to our Hearing Restoration Project (HRP) consortium of researchers.

She paint-filled an embryonic mouse inner ear and let us view it. I put on a pair of gloves and saw how tiny it was in the petri dish (less than 2mm in length) and then what it looked like magnified. As the day went on, I grew more and more impressed with the technical aspects of scientific hearing research.

In Dr. Griffith's lab, he discussed how his team helps those with genetic hearing loss. By identifying specific genes that are mutated in families, in certain cases, he can develop personalized therapies to address the cause of the hearing loss and prevent it.  Dr. Griffith also discussed exciting research from another NIDCD lab that is using CRISPR/Cas9 genome editing technology to create and test therapies. This amazing editing tool has been touted as being faster, cheaper, and more accurate than previous gene editing technologies; HRP researcher John Brigande, Ph.D., is also using it in his current HRP project. 

It was a super impressive tour—the scientists and administration are all friendly, smart, and most importantly dedicated to advancing hearing science. It’s so refreshing to meet so many people who are committed to the advancement of humankind and to uncovering discoveries that will lead to improvements in the quality of life and health of so many.
 
HHF is very happy to partner with the NIDCD and its research goals, which Dr. Battey wrote about in the Summer 2016 issue of Hearing Health magazine. We are also very proud the majority of early-career scientists we support through our Emerging Research Grants program go on to earn additional funding from the NIH, underscoring the importance of the innovative research both our institutions believe is worthy.

Congressional staff and hearing advocates at FCHHC’s 2016 NIDCD tour

Summers With HHF Are Well Spent

By Morgan Leppla

Last December, I realized I would need something to do for the summer after my freshman year of college. I knew I wanted to end up in a city and work with nonprofits, so I put out feelers for internships in San Francisco, D.C., and New York City.

A friend of Hearing Health Foundation (HHF) put me in touch with Laura Friedman, HHF’s communications and programs manager, who I interviewed with earlier this year. It went well (clearly, I’m here), and to my delight, on the same phone call she offered me an internship at HHF.

I had a few offers from other organizations but Laura told me that HHF would be dedicated to ensuring I would have a fruitful internship experience. And on the last day, I can corroborate her initial promise.

Before I started my internship, my knowledge of hearing health was both sparse and vague. I knew little about research conducted on hearing loss and related disorders, and I assumed my internship would be spent monitoring HHF’s Twitter and Facebook accounts and photocopying, while occasionally eavesdropping in on conversations otherwise too important for my ears.

After 12 weeks of actually writing blogs (many thanks to people reading them!) and, for the Fall issue, magazine articles, plus researching statistics and talking and working with people who care about HHF’s mission, I now have a plethora of hearing-related facts I intend to regale classmates with at (not-too-loud) parties for years to come.

For those who don’t know, HHF’s full-time staff includes four people, with three part-time freelancers—so while they are small, this is a talented and efficient group! The CEO, Nadine Dehgan, will stuff appeal envelopes with me and anyone else in a staff meeting just to get it done. HHF employees may not be the scientists discovering breakthroughs, but the energy, labor, and hours behind collecting enough dollars to sustain the organization and fund life-changing grants surely accumulate into something with a recognizably valuable shape. To witness such unwavering commitment is striking.

I am not trying to hide my partiality for HHF, I think that much is clear. It’s true Laura has tried to infuse my experience with purpose, so I am of course grateful for that. And if you’ve been keeping track, I’ve hit a few of those buzzwords (unwavering, life-changing, meaningful, etc.) you might find usually overstate the point or are overused to meaninglessness, but this time I don’t think I’ve fallen into that trap.

It’s not that often that you (that is, people who consume media online) are allowed to peer into an organization’s foundation, for the cloak of professionalism is mighty. But hopefully I’ve brought to your attention the quality and dedication I have witnessed firsthand today and every day here at HHF.  

I leave my summer internship with appreciation and admiration and the hope that HHF will prosper for years to come!

And, of course, if it within your bandwidth, please donate to make sure this happens!

HHF Supporter Alex Mussomeli Selected as Finalist in 2016 Oticon Focus on People Awards

By Oticon

Alex Mussomeli  of Westport is among the outstanding individuals with hearing loss selected as a finalist in 2016 Oticon Focus on People Awards, a national competition that celebrates individuals who are helping to eliminate negative stereotypes of what it means to have a hearing loss.  The soon-to-be sixth grader is one of three outstanding young people selected as a finalist in the Student category.  Beginning June 20, people can cast their vote for Alex at www.oticon.com.  Total number of votes will help determine whether Alex is the first, second or third place winner in the national awards competition. 

Westport News

This is the 18th year that the Oticon Focus on People Awards has honored hearing impaired students, adults and advocacy volunteers who have demonstrated through their accomplishments that hearing loss does not limit a person’s ability to make a positive difference in the world.

Alex, diagnosed with hearing loss as an infant, appreciates the advances in hearing research and technology that have made his life easier and happier. The gifted musician and artist is determined to use his talents so other children with hearing loss can experience the benefits he has enjoyed. He found his inspiration in a legally blind artist who raised $1 million for charities benefiting children through the sale of his paintings.  This April, Alex held his first solo art show to benefit the non-profit Hearing Health Foundation’s Hearing Restoration Project. The young artist worked diligently for a year on the colorful acrylic paintings, prints and notecards that raised a whopping $16,000 for the Foundation.

Website visitors are encouraged to read all of the stories from this year’s 12 finalists in four categories: Student, Adult, Advocacy and Practitioner. 

Voting closes on August 15. Winners will be announced in September.

HHF's FY'15 Annual Report: Read It Now

By Morgan Leppla

Hearing Health Foundation (HHF) is pleased to announce that our 2015 annual report is now available. From the latest hearing research to how we have worked to fulfill our mission, the report is a comprehensive look at our programs, events, and activities for fiscal year 2015 (Oct 1, 2014 - Sept 30, 2015).

In the report, we review HHF’s progress, talk to supporters, and decode the financials. Here are some highlights:

• Check out the incredible supporters who ran, hiked, and hosted events all to benefit HHF’s mission!

• HHF’s Hearing Restoration Project (HRP) consortium of researchers made notable strides in hearing and tinnitus research. In 2015, the HRP designed a model to test candidate hair cells for regeneration in deafened adult mice, and that’s only a fraction of the story.

  • HRP researchers like Andy Groves, Ph.D., thank you. “Federal funding for biomedical research has decreased by over 20% since 2003, and it shows no sign of increasing any time soon. Your support is critical to help support the skilled young scientists in my lab and to keep the lab afloat,” he says.

• HHF awarded ten Emerging Research Grants (ERGs) to innovative scientists in the areas of Central Auditory Processing Disorder (CAPD), Hyperacusis, Ménière’s Disease, and Tinnitus. Learn more about what they are doing with their research grants.

• See if your name made the donor list. Didn’t see your name...make a gift by Sept 30, 2016, to be listed in fiscal year 2016’s annual report.

• Keep your eye (or ear!) out for hearing-related facts and statistics.

Get all the details in the full report here. We are excited by our progress over the past year and hope you enjoy reading it. As always, have any questions, please email us at info@hhf.org!

Please consider making a gift today so we can continue to carry out our mission and find a cure for hearing loss and tinnitus.

YOU ARE OUR HOPE.

HHF Achieves Accreditation From BBB Wise Giving Alliance

By Morgan Leppla

Accountable, transparent, responsive, and enterprising. 

It takes a resolute organization to embody these traits. While we believe that has been the case since Hearing Health Foundation’s inception in 1958, we now have Better Business Bureau Wise Giving Alliance (BBB WGA) accreditation to prove it!

The BBB WGA evaluates charities based off of 20 holistic standards that include scrutinizing financial transparency and planning, internal governance, effectiveness measurements, and fundraising disclosure practices and accuracy. Check out our profile at Give.org today!

We also recently received a Platinum rating from Guidestar, which is the highest rating available. This rating signifies that HHF yields measurable results using self-defined metrics that reveal much more than oversimplified financial ratios.

But why should this matter to you?

Because these 3rd party ratings show we achieve our mission, responsibly!  

“The public can be assured that every charity evaluation is completed with careful, objective analysis of charity information,” says Art Taylor, president and CEO of the BBB Wise Giving Alliance. “

The more we become deserving of your trust, the better the prospects for curing and preventing hearing loss and tinnitus. More than 80 cents of every dollar goes to funding programs and research, meaning we have the capacity to to enact the changes we promise.

While the BBB seal of approval verifies the standards of our operating procedures described above, our commitment to quality is motivated by a much greater force. It is traceable to our mission and core values, which structure the ways we act and choices we make. Accountability to our constituents and stakeholders is crucial to upstanding practices, and without it we would not be HHF. 

Please consider making a gift today so we can continue to carry out our mission and find a cure for hearing loss and tinnitus. 

YOU ARE OUR HOPE.

Brush with Hearing Loss Inspires Young Artist's Vision to Help Others

WESTPORT — A young artist appealed to people’s sense of sight at his first solo art show Saturday to raise funding for research to cure hearing loss.

Alex Mussomeli, 11, a student at Long Lots School, who uses a Cochlear implant in one ear and a hearing aid in the other, sold 51 of the 54 acrylic paintings he displayed in the show, titled, “The Wonder of Art Exploration!” It raised approximately $16,000 for the New York City-based Hearing Health Foundation. According to the HHF website, it is the largest non-profit funder of hearing research and its aim is “to prevent and cure hearing loss and tinnitus through groundbreaking research and to promote hearing health.”

“Our mission is to fund research through a consortium of scientists to find a cure for hearing loss. We have a Hearing Restoration Project,” said Roger Harris of New Canaan, an HHF board member, who attended Alex’s art exhibit at the Fairfield County Hunt Club.

Harris said Alex is “a very gifted young man,” and he is impressed with the boy’s philanthropic efforts. “It was his idea to have this show. To have someone at his age be so socially aware is really amazing.”

“This is my first time exhibiting. It feels pretty special and exciting,” said Alex, who worked for a year to produce his colorful paintings, prints and notecards, many of them with floral and spring themes: “Enchanted Flowers,” “The Tulip Playing the Note,” “The Dreamy Sunflower,” “The Bright Butterfly” and “A Spring Dream.”

“They’re full of life and my happiness,” he added, observing that painting is “my favorite thing to do.”

“Spring after the Storm” was fifth-grade classmate Caroline Motyl’s favorite. “I like the name and the color best because I think it’s really creative,” the 10-year-old said, adding that Alex’s project is “a really brave thing to do. It’s nice because he’s helping other people,” she said.

Alex said he was inspired to use his artistic talent for a good cause after seeing a “CBS Sunday Morning” story about a legally blind artist, Jeff Hanson, who has raised $1 million for charities like the Make-a-Wish Foundation and a children’s hospital through the sales of his paintings.

“I felt like ‘Why couldn’t I do the same for hearing so other kids like me can hear?’ I like to talk to my parents about my day and listen to music,” said Alex.

Alex with Roger Harris

Nada Mussomeli, Alex’s mother, said he was 3 months old when his hearing loss was detected in both ears due to an enlarged vestibular aqueduct, an inner-ear malformation. He received a Cochlear implant in the right ear when he was 3 years old and also has a hearing aid in his left ear.

“My parents wanted me to be mainstreamed so I got a hearing aid, but we learned that the implant is stronger,” Alex said.

Alex uses his senses of hearing and vision as he paints. In his artist’s statement Alex said, “Sometimes I get inspired by something I see.” He also listens to music, sometimes relaxing and sometimes stirring compositions. “I like music full of expressions. I always have music on when I paint.” Ideas dance in his head as his brush dances on the canvas, he said.

Hundreds of people turned out for Alex’s show, among them John Hansen of Fairfield, who said he appreciates the young artist’s use of color, diversity within in the field of plant life and positivity.

Family friend Carol Mueller of Westport said Alex “is an inspiration to all who know him. Alex loves art and enjoys visually expressing his optimism through his painting.”

Nada and Adam Mussomeli said they could not be more proud of their son. Nada Mussomeli said she is inspired watching him do his art and enjoy every minute. “It was a journey.” She also said her dream is that a cure for hearing loss is discovered in her lifetime, but if not in hers then in Alex’s.

This article originally appeared in Westport News on April 12, 2016. It was repurposed with permission. 

Promoting Research to Improve Hearing Health - Seven Questions - ARMY Magazine - Dec 2015

Promoting Research to Improve Hearing Health

ClaireSchultzistheCEOofHearing Health Foundation (HHF), a 501(c)(3) tax- exempt organization committed to ensuring the public—especially service members, veterans and their families—have the opportunity to enjoy life without hearingloss and tinnitus.

1. What is Hearing Health Foundation’s mission?
   
   HHF’s mission is to prevent and cure hearing loss and tinnitus through groundbreaking research, and to promotehearing health. Through our Hearing Restoration Project, we are working on a biological cure for hearing loss and tinnitus for millions of Americans—including hundreds of thousands of military service members and veterans.
   

2. What military-specific initiatives has HHF worked on?
   
   In 2012, we joined the DoD’s Hearing Center of Excellence as a partner through general outreach, radio programs and co-authored articles. We share many of the same goals in raising awareness, providing resources and information, and continually improving the health and quality of life of service members and veterans.
   
   In 2014, HHF launched an online campaign geared toward veterans to provide information and resources about tinnitus treatments and the Hearing Restoration Project’s efforts, and including links to expert content in our magazine and to other hearing and veteran-related organizations and associations. [Visit http://hearinghealthfoundation.org/veterans.]
   
   Pharmaceutical intervention for hearing loss is a major research area for the military.
   

3. Some military members feel hesitant about seeking treatment for hearing-related issues. What does HHF do to mitigate that stigma?
   
   Service members may feel stigmatized about seeking treatment for their hearing problems because there are many myths and misconceptions about people with hearing loss. At HHF, we provide factual information as well as resources to help reduce the stigma of hearing loss, and to encourage getting treatment as soon as possible.
   

4. Do many service members regard hearing loss as a “badge of honor”?
   
   HHF has not heard this sentiment, but it is our hope that members of the military take every effort to prevent hearing loss while in the service, and to address any hearing issues they may have developed as soon as they are discovered. Untreated hearing loss can lead to many additional medical problems; for example, depression, isolation and dementia.
   

5. Are more Iraq and Afghanistan veterans seeking hearing loss treatment?
   
   At least 60 percent of troops returning from Iraq and Afghanistanhave acquired hearing loss or tinnitus because of noise exposure during their service. According to the Hearing Center of Excellence, in the past decade, 840,000 service members have been diagnosed with tinnitus, and just over 700,000 have hearing loss.
   

6. What are the most effective treatment options?
   
   Current treatments include hearing aids, cochlear implants and other devices. Treatments available for tinnitus include sound therapy, drug therapy, psychological interventions, brain stimulation and tinnitus retraining therapy, which is being tested through clinical trials at six flagship military treatment centers.
   
   A sequential program known as progressive tinnitus management has emerged as one of the most promising research-based methods. In order to help patients, it is necessary to mitigate the functional effects of tinnitus, such as difficulties with sleep, concentration and relaxation.
   

7. How can service members prevent hearing loss?

Traditional earplugs are effective in preventing hazardous noise from entering the ear canal, but they can interfere with speech communication or low-level combat sounds. Level-dependent earplugs have a small filter that enables soft noises to be conveyed with full strength while eliminating high-frequency or impulse noise.

Earmuffs are another option. … They provide greater attenuation than earplugs [but] make it harder to pick up the softer sounds that may be necessary for verbal communication. An electronic communication system in the earmuff allows wearers to communicate clearly with each other.

Noise-attenuating helmets should be used by military personnel operating combat vehicles or aircraft. These helmets protect the wearer from hearing loss, crash impact and eye injuries while also increasing communication ability through a radio communication piece.
Technologically advanced helmets include an active noise-reducing technology that monitors the sound energy around the ear and cancels any unwanted noise while preserving verbal communications. A communications earplug with a microphone can be worn in addition to the helmet for high-quality verbal clarity.

—Thomas B. Spincic

HHF Board of Directors Elects Elizabeth Keithley, Ph.D. as its new Board Chair

By Elizabeth Keithley, Ph.D.

Elizabeth Keithley, Ph.D., Chairman, HHF Board of Directors                                            Professor Emeritus, Department of Surgery and Otolaryngology

University of California at San Diego

I have been a scientist who does research on mechanisms of inflammation and aging on the inner ear for more than 30 years. Growing up with a mother who had a hearing loss, I understood of the impact that hearing loss can have on a person’s life. It was quite natural that while in college I became interested in neuroscience and specifically the study of sensory perception. A professor asked me to work in his lab on hearing mechanisms and I have been studying them ever since.

In the 1990s I was asked to review the Emerging Research Grant (ERG) applications and that began my association with Hearing Health Foundation (HHF, and formerly known as Deafness Research Foundation). Soon afterward I was asked to join the Board of Directors. I have remained on the Board since that time.

The ERG program is a very valuable asset for the research community by enabling early-stage researchers to get their careers started. This program allows them to write a proposal describing a series of experiments to test a hypothesis that will increase our understanding of auditory or vestibular (hearing or balance) mechanisms. With data generated during the ERG funding period, the researcher can write an expanded, plausible proposal to address a larger issue. This becomes a proposal for funding from the National Institutes of Health.

In some ways the ERG program is a “dress rehearsal” for a career as an academic scientist. When these scientists receive funding from HHF, they have the opportunity to develop their own ideas. They begin to have some independence from a more senior investigator. The best path to achieving a world where everyone can hear is to continue bringing new people with their innovative ideas into the field of hearing and balance research. A review of the names of HHF-funded researchers over the past half century reveals the American leaders in the fields of hearing and balance research from the mid-1980s on.

As of October 1, 2015, I am the Chair of the HHF Board. I am very pleased to be involved with this important organization. HHF was created almost 60 years ago by a woman who was steadfast in her support of funding for new technologies and treatments for hearing loss. I will do whatever I can to ensure we are able to continue to make a meaningful impact through hearing research. 

It is a goal to see HHF raise enough money to fund the Hearing Restoration Project. The consortium model is a wonderful way to focus the attention of scientists to work together collaboratively and get meaningful results. If we can get to the level of funding $5 million to $6 million for research annually, it will give the scientists the resources to further accelerate the pace of the research and produce advances to prevent, treat, and cure hearing loss. Another goal that is equally as important to me is to be able to return our funding levels for the ERG program to $1 million a year. This was the level of funding when I started 20 years ago and I don’t think it is unreasonable to recommit to that amount in the future.

Hearing and balance research and advancements in hearing devices and technology have come a long way over the past 50 years. Significant outcomes have been achieved, but we still have a lot of work to do. The number of people with hearing loss and other hearing-related conditions is increasing and we need to continue to fund the most cutting-edge research until there is a day when every person can enjoy life without a hearing loss or tinnitus.  

I am interested in getting to know the members of our Hearing Health community.  If you have questions or comments, please don’t hesitate to reach out to me via email.  

I look forward to hearing from you.

What Does It Mean To Be 4-Star Charity?

By Sloan Blanton

The nonprofit sector is growing, with more and more organizations and foundations emerging daily. However, they are not all managed or held to the same standard. Because of this, donors want to be ensured their philanthropic dollars are being utilized and allocated properly. They are requesting higher accountability and transparency from the organizations they support.

Such donors look for third-party accreditation that their dollars are being maximized. Charity Navigator is America's most-utilized independent evaluator of charities in the competitive philanthropic marketplace, championing efficient, successful, open and ethical charities. By celebrating top charities, Charity Navigator provides the public with useful information needed to provide donors with confidence in their charitable choices.

Charity Navigator has rated Hearing Health Foundation (HHF) with 4 out of 4 stars, the highest possible rating. This indicates that HHF adheres to sound governance, accountability, transparency, and fiscal management, minimizing the organization’s chance of engaging in fiscally irresponsible activities. This rating from Charity Navigator also illustrates how HHF pursues its mission to prevent and cure hearing loss and tinnitus while promoting hearing health in a financially responsible way.

Hearing Health Foundation’s 4-star rating from Charity Navigator differentiates HHF from its peers, and assures the public it is worthy of their trust. "Donors have a choice as to where they invest their philanthropic dollars. We strive to make the greatest impact with every contribution to HHF and are honored to be recognized for our efforts by Charity Navigator, America's premier charity evaluator," said Claire Schultz, HHF’s chief executive officer.

Forbes, Business Week, and Kiplinger's Financial Magazine, among others, applaud Charity Navigator's unique method of applying data-driven analysis to the nonprofit sector. As the leading charity evaluator in the United States, it draws more website traffic than all other charity rating organizations combined.

More than 80 cents of every dollar donated to HHF directly benefits its research efforts towards a cure for hearing loss and tinnitus. Please consider making a gift today. Imagine the day when HHF finds a cure... you'll be able to say you helped made it possible!

HHF reports to the Internal Revenue Service using form 990 under the tax identification number of 13-1882107. HHF is a 501(c)(3) tax-exempt corporation. All donations to HHF are tax-deductible.