Urgent Call to Action: Proposed Cuts to Hearing Research

By Nadine Dehgan, Elizabeth Keithley, Ph.D., and Peter Barr-Gillespie, Ph.D.

Hearing Health Foundation (HHF) is deeply concerned to learn the Trump administration has proposed an 18% cut to the budget for the National Institutes of Health (NIH).

Such a cut would be devastating for all medical research - including hearing research. As an advocate for the millions of Americans who have hearing loss we are especially troubled.

A drastic decrease to the funding of hearing research would disrupt the efforts of the many hearing researchers who dedicate their lives to finding cures and treatments for hearing loss, tinnitus and balance disorders.

HHF and the NIH are partners in funding research. HHF’s two research programs—the Emerging Research Grants and the Hearing Restoration Project—both rely on NIH support. HHF's funding alone cannot support these labs.

Private funding of hearing research is dwarfed by NIH support, and these proposed cuts could harm the research program of each and every hearing research lab, including those supported by the HHF.

As people with hearing loss, parents of those with hearing loss, children of those with hearing loss and as the leadership of the Hearing Health Foundation we ask your support. Financial support is always needed and welcome - but in this case we are specifically asking for you to contact your representatives to let them know that you oppose cuts to the NIH (and in fact support increases to the NIH’s budget).

If you are passionate about funding the research that will lead to cures for hearing loss and balance disorders, now is the time to act.

Please join us in contacting your Senators and House Representative's offices today.

With our sincere thanks,
Nadine Dehgan | CEO of HHF
Elizabeth Keithley | Chair of the Board
Peter Barr-Gillespie | HRP Scientific Director

HHF Welcomes Two New Board Members

By Nadine Dehgan

Hearing Health Foundation (HHF) is thrilled to welcome two new board members, Jason Frank and Sophia Boccard. Their unwavering dedication to furthering research and awareness of hearing loss and its associated disorders make Jason and Sophia the perfect addition to our leadership team.

Jason Frank is a Vice President/Assistant General Counsel of JPMorgan & Co. in New York City. Jason and his wife Jenny delved into the world of hearing loss after their son was diagnosed with bilateral, mild to moderate sensorineural hearing loss. When looking for resources, Jason says, “We found HHF and the Hearing Restoration Project and knew we wanted to to get involved…. It has been over five years and, while our son is doing wonderfully thanks to early intervention and access to hearing aids since he was 8 weeks old, we remain committed to spreading awareness for hearing loss and finding a cure. I am extremely excited about joining the National Board and becoming more intimately involved with HHF and its cause.”

Sophia Boccard is a digital marketing strategist in the hospitality industry with over a decade of marketing experience in the entertainment industry. “As someone who was born with moderate to severe hearing loss, I've always accepted the loss of hearing as a part of who I am. After being diagnosed with Usher syndrome type 2a in 2012, I realized that a cure for both hearing and vision was something I needed to fight for,” Sophia says. HHF looks forward to working with Sophia to share her experience living with Usher syndrome to raise awareness and find better therapies and cures.

HHF is excited to have Jason and Sophia as new board members and we look forward to their contributions to HHF’s mission. Please join us in giving them both a warm welcome!

HHF Named Twice in Consumer Reports

Hearing Health Foundation is absolutely thrilled to be named—twice—in Consumer Reports’ “Best Charities for Your Donation,” published Dec. 14, 2016.

The article offers tips for finding a charity that, in its words, “really puts your money to work.” It reviewed the detailed process by which charity rating organizations Charity Watch, Charity Navigator, and BBB Wise Giving Alliance assess charities.

“Collectively, these groups evaluate thousands of nonprofit organizations based on how they collect and spend their money, how transparent they are to the public, and how well they’re governed,” the story says.

Using the watchdog reports, Consumer Reports listed up to five of the highest- and lowest-rated charities in 11 categories.

Hearing Health Foundation was cited as one of the nation’s five best charities—and the only one cited twice, in the categories “Blind and Impaired Hearing” and “Health.”

I like to say Hearing Health Foundation is “small yet mighty”—so it is very gratifying to get confirmation of our fiscal health from a respected publication like Consumer Reports.

During this season of giving, we are grateful for your gifts that enable us to further our mission of hearing protection, education, and research.

If you haven’t yet, and are able to give, please consider an end-of-year donation knowing that all of us at Hearing Health Foundation—staff, scientists, board members, and other advisers—are working tirelessly to make your dollars count.

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.