Fundraising for a Cure

HHF Partner Hyperacusis Research Shares 14-Year-Old’s Heartbreaking Story to Fight Noise Intolerance

  Photo Credit: Hyperacusis Research

Photo Credit: Hyperacusis Research

By Lauren McGrath

Hearing Health Foundation (HHF) Emerging Research Grants (ERG) grant funder Hyperacusis Research—a nonprofit dedicated to developing effective treatments for hyperacusis and to funding research that will eliminate the underlying mechanisms that cause hyperacusis—has a new reason to fight to cure the noise intolerance disorder.

Cindy, 14 years old, has suffered from hyperacusis since she was blasted in the face with an airhorn one year ago. The blast almost immediately prompted “a burst of pain in [her] ear” that made it “feel like someone was stabbing [her].” Six months and several doctors’ visits later, an occupational therapist recognized her symptoms and diagnosed her with the disorder, which causes Cindy to experience pain at low levels of sound relative to what a person with typical hearing can withstand.

Once a happy and social eighth-grader, Cindy now rarely leaves her home. Secluded from the painful sounds of the outside world, her house has become “her sanctuary,” her mother explains. Her intolerance of everyday noises like the school cafeteria and teachers’ voices has forced her to leave public school in exchange for an isolating homeschool experience. “The thing I hate most is that I can’t see friends,” Cindy shares.

Cindy suffers from one of four hyperacusis subtypes called pain hyperacusis. The other three types, according to Hyperacusis Research, are loudness hyperacusis (which causes moderately intense sounds to be perceived as very loud), annoyance hyperacusis (which causes negative emotional reactions to sounds), and fear hyperacusis (which prompts an aversive response to sounds that causes anticipatory response and avoidance behavior). Specific medical treatments, at the moment,  do not yet exist for pain hyperacusis.

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Those inspired to help Cindy can donate to Hyperacusis Research to advance the ontological knowledge of hyperacusis through research grants, including those awarded to HHF’s ERG investigators.

Since 2015, Hyperacusis Research has generously funded grants for a total of five ERG investigators focused on hyperacusis at the University at Buffalo, Oregon Health and Science University, and Massachusetts Eye and Ear Infirmary. You can learn more about our ERG researchers’ efforts to better understand the mechanisms, causes, diagnosis, and treatments of hyperacusis and severe forms of loudness intolerance here.

We need your help supporting innovative hearing and balance science through our Emerging Research Grants program. Please make a contribution today.

 
 
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You Can Change Lives

By Nadine Dehgan

On behalf of folks like John—Thank you for your continued support of Hearing Health Foundation (HHF), the largest U.S. nonprofit funder of hearing loss and tinnitus research in America.

We are dedicated to discovering better treatments and permanent cures.

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John—a Retired U.S. Army Colonel—served during the Cold War. Constant exposure to gunfire and high-pitched helicopter engines took a toll on his hearing. He was diagnosed with tinnitus and hearing loss in 1996. His diagnosis fueled his desire to improve the lives of active duty personnel and veterans since.

Tragically, John's circumstances are not unique. Tinnitus is the most common physical ailment for returning military personnel, followed by hearing loss. 60% of Iraq and Afghanistan veterans suffer from one or both of these conditions.

Many Veterans, even those who pass their hearing test, have trouble understanding speech. This condition, known as auditory processing disorder, is often caused by blast exposure.

Today John teaches at the Naval Postgraduate school where he often counsels young military officers as they cope with their tinnitus, as tinnitus can cause significant sleep, concentration, and mood issues.

Can you help bring us closer to better treatments and cures for tinnitus for John and the 65 million other Americans with tinnitus, many of whom are also veterans? 

PLEASE, IF YOU ARE ABLE, GIVE TO HHF TODAY. 100% OF YOUR GENEROUS GIFT WILL BE DIRECTED TO THE AREA OF YOUR DESIGNATION. 

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Help Us Move Beyond Grateful

By Nadine Dehgan

Thank you for your partnership as we progress toward our dream of cures for hearing loss and tinnitus.

Our researchers are hard at work discovering how reptiles, birds, and fish are able to restore their hearing after being deafened so they can translate this knowledge into cures for mammals and humans. 

When better treatments and cures are discovered, I know Jamie—pictured below with her four children—will be incredibly grateful for the opportunity to have her hearing restored. We will all be grateful.

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Jamie's life changed one year ago when her daily activities were suddenly compromised. Words turned into mere muffled sounds—and then silence. She found herself increasingly dependent on lip-reading to avoid asking people to repeat themselves, a request that embarrassed her.

Her fears were confirmed when her doctor determined that Jamie, 32, has severe hearing loss in both of her ears. The doctor was astonished by the intensity of the decline in Jamie's hearing.

Jamie is fortunate to have a supportive and loving husband and family. But she lives in fear she may never be able to hear her beautiful children and other important sounds in her life.

Can you help bring us closer to better treatments and a cure for hearing loss for Jamie and 48 million other Americans with hearing loss?

Please, if you are able, give to HHF today. 100% of your generous gift will be directed to the area of your designation. 

Thank you and happy holidays!

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Give Your Way on #GivingTuesday

By Lauren McGrath

Hearing Health Foundation (HHF) kindly requests your help this #GivingTuesday, an annual international day of giving back.

While making a direct contribution is an option, it isn’t the only way that you can support our shared mission to enhance the lives of millions through better treatments and permanent cures for hearing loss and tinnitus.

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2017 was monumental for HHF in that your support enabled HHF to fund more critical hearing research than ever before. Still, more work must—and can—be done. Our Hearing Restoration Project’s Scientific Director, Peter Barr-Gillespie, Ph.D., is optimistic about the progress you’ve already empowered. “The clues are becoming more clear, and we expect the next year will yield a bounty of exciting results,” he shares.

As people around the world unite today in celebration of giving to causes that matter to them, we hope that you are inspired to act on behalf of HHF. Take your pick from the options below to give your way on #GivingTuesday:

Make a Direct Contribution

HHF accepts donations through our website’s secure donation portal and by mail to 363 Seventh Ave, 10th Floor, New York, NY 10001. We pledge to use your gift wisely. Our responsible and effective donor stewardship practices have been commended by Better Business Bureau Wise Giving Alliance, Consumer Reports, Charity Navigator, CharityWatch, and GuideStar. All donors are recognized and acknowledged in our Annual Report.

If you are able to give today, Tuesday, November 28, consider making your donation through our Facebook page, where your donation will be generously matched by the Bill & Melinda Gates Foundation.

Start a Community Fundraiser

You needn’t support Hearing Health Foundation's critical hearing loss research and awareness programs on your own. Reach out to your community—your friends, family, neighbors, colleagues, or classmates—to give on your behalf as an HHF Community Fundraiser on Facebook or Classy. Please take advantage of our simple toolkits to ensure your fundraiser is a successful one.

Go Shopping

Perhaps the simplest way of all to give is to put your personal shopping to work for HHF—at no additional cost to you! If you are scoping out savings opportunities on Amazon, be sure to make your purchase through AmazonSmile and designate HHF as your charity of choice. If you are shopping on one of many other popular retailers’ sites like CVS, Nike, Etsy, Groupon, Macy’s, or Modell’s, you may allocate a percentage of your purchase to HHF through iGive.

Please email us at info@hhf.org if you are experiencing difficulty or have questions about our ways to give. Thank you for considering HHF on #GivingTuesday.

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Illuminating Usher Syndrome: A Three-Day Event Series to Bring Deafblindness Out of the Dark

By Sophia Boccard

A crowd of people made their way to Lululemon HUB on 5th Avenue in New York City on the evening of September 11 to participate in Day One of a three-day Usher syndrome event series. The cocktail gathering overflowed with wine, cheese, and spectators against the beautiful backdrop of Lululemon’s community space.

  Usher Syndrome Society banner near the portraits in the park. Photo by Rebecca Alexander.

Usher Syndrome Society banner near the portraits in the park. Photo by Rebecca Alexander.

The event, called Rosé in the Dark, was a collaboration amongst four friends, Rebecca Alexander, Peggy Borst, and myself—all of us have Usher syndrome—and Nancy Corderman, a mother to two kids with Usher syndrome. Our objective was to bring insight to life with Usher syndrome through immersive deafblind experiences.

While Usher syndrome itself is quite rare, it is the most common cause of deafblindness—the loss of both hearing and vision. In the United States, the inherited condition affects approximately four babies in every 100,000 births while worldwide, more than 400,000 people are affected with Usher syndrome.

At Rosé in the Dark, we began with a three-person panel discussion. The Q&A was very personal, emotional, and informative. Following the panel, guests participated in a deafblind exercise, wearing goggles that replicate tunnel vision, a common viewpoint for a person with Usher syndrome.

On Tuesday for Day Two, we installed a public exhibit of large portraits of people with Usher syndrome in Washington Square Park. Visitors, tourists, and students from nearby universities all absorbed personal information about these individuals while browsing through the photographs and reading their stories.

For Day Three, we concluded the series with an exercise class led by Rebecca Alexander, who is also a Lululemon Ambassador. Admission to the class was donated to Usher syndrome research.

  Sophia Boccard speaks at Rosé in the Dark. Photo by Socrates Figueroa

Sophia Boccard speaks at Rosé in the Dark. Photo by Socrates Figueroa

As an individual with Usher syndrome, building awareness is important. Comprehending the invisible condition and knowing how to help or respond to individuals with the condition can be difficult.

We will be continuing to raise awareness and create more experiences to educate everyone on ways they can help and contribute to this rare but damaging condition.

Sophia Boccard sits on Hearing Health Foundation (HHF)’s Board of Directors and 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.”

Empower groundbreaking research toward better treatments and cures for Usher syndrome. If you are able, please make a contribution today.

 
 
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HHF Attends Cantor Fitzgerald’s Charity Day, a Star-Spangled Effort to Build Hope on Tragic 9/11 Anniversary

By Yvonnie Phan

Hearing Health Foundation (HHF) was among the dozens of charities selected to participate in yesterday’s Cantor Charity Day—an annual, celebrity-filled philanthropic event held around the anniversary of September 11—at Cantor Fitzgerald’s New York City headquarters.

  From left: HHF Board Vice Chair Paul Orlin, Cantor Fitzgerald Relief Fund President Edie Lutnick, Former Hockey Star Martin St. Louis, HHF CEO Nadine Dehgan

From left: HHF Board Vice Chair Paul Orlin, Cantor Fitzgerald Relief Fund President Edie Lutnick, Former Hockey Star Martin St. Louis, HHF CEO Nadine Dehgan

HHF’s attendance marked the organization’s fifth year of participation. HHF was represented by Hockey Legend Martin “Marty” St. Louis, HHF Board member Paul Orlin, and Nadine Dehgan, HHF’s CEO.

As Marty’s own foundation has supported HHF’s life-changing hearing and balance research in the past, HHF was especially thankful that he also dedicated his time to serve as an ambassador.

  Marty St. Louis and Robert De Niro

Marty St. Louis and Robert De Niro

The HHF trio had a particularly memorable encounter with Robert De Niro and another hockey star, Mike Richter, who were also among Charity Day’s celebrity roster. Marty told Mr. De Niro that in his days as a player (for Tampa Bay Lighting, Calgary Flames, and the New York Rangers), he impersonated De Niro’s film roles in the locker room to energize his teammates before big games—and the movie star found that amusing.

All proceeds from Cantor Charity Day will benefit the Cantor Fitzgerald Relief Fund, which aids the families of the firm’s 658 employees who perished in the World Trade Center attacks. Since its 2001 establishment, the Relief Fund has expanded its reach to also support victims of terrorism, natural disasters, and emergencies, wounded military personnel, and other charitable causes worldwide, including HHF.

  Marty making trades on the phone

Marty making trades on the phone

HHF CEO Nadine Dehgan reflects on the day: “Being part of this event where everyone gets together for the sole purpose of helping others is so inspiring. I am honored HHF was selected to participate again and grateful for the folks who make it happen, especially the Relief Fund’s President, Edie Lutnick, whose energy is unmatched. Marty was a superstar on the phone helping make trades!”

The Fund’s prioritization of wounded veterans is especially compatible with HHF’s work; tinnitus and hearing loss are the most common disabilities that afflict returning American military members.

“HHF will use the funds received from this event to continue to be a resource for veterans with hearing loss and to further research for treatments and cures for the 360 million people around the world who have hearing loss,” Nadine pledges.

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Celebrating Your Birthday in September? Learn How You Can Help HHF!

By Lauren McGrath

Sharing birthday presents is a popular custom. Most Americans report positive emotions when giving gifts. 83 and 78 percent of people feel joyful and generous, respectively, when sharing a present with a loved one, Pew Research finds. 

The receiving side of the gift-giving process is much different. The question, "What do you want for your birthday?" often triggers a mental blank, especially when multiple friends or family members inquire simultaneously. To think of one tangible item on the spot can be difficult.

More people in America were born in September than in any other month, according to a study shared in Reader's Digest from the U.S. National Center for Health Statistics, so it follows that this is the most popular birthday gift-giving time of the year, too.

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Should you fall among the millions of Americans celebrating a birthday during this ninth month of 2017, Hearing Health Foundation (HHF) has a suggestion for you. Did you know that you can dedicate your birthday to a nonprofit organization of your choice on Facebook, inviting your friends to give directly to the cause?

A new feature on Facebook prompts users two weeks before their birthday to select a nonprofit organization's page. The individual whose birthday is approaching can set a goal amount and enter a custom message. Friends will see the public post, which expires at midnight on the user's actual birthday.

HHF relies on the generosity of individuals to propel forward its critical hearing and balance research, awareness efforts, and advocacy work. If you are a September-born HHF supporter who considers our work personally valuable, please consider creating a fundraiser of any size. Every dollar makes a difference.

Help your friends contribute to HHF through the following steps:

1. Once logged into Facebook, go to the Fundraisers page.

2. Click Raise Money.

3. Click Get Started.

4. Choose Nonprofit.

5. Type or Choose Hearing Health Foundation.

6. Personalize your message and click Create.

Happy birthday! And thank you for considering donating your special day to HHF.

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The Les Paul Foundation Funds School Initiatives, Music Camps, Classroom Projects, and Hearing Health Programs

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The Les Paul Foundation Funds School Initiatives, Music Camps, Classroom Projects, and Hearing Health Programs Recent 2017 Grant Recipients Announced

New York, New York – April 19, 2017 - The Les Paul Foundation, whose mission is to share the legacy of Les Paul, has continued its commitment to provide funding to projects that share Les Paul’s spirit. In 2017, recipient organizations are furthering Les Paul’s dreams and sharing his vision and innovation with their programs.

Organizations that have received funding from the most recent Les Paul Foundation grants include:

Birch Creek Music Performance Center of Egg Harbor, WI offers summer guitar jazz master classes that include discussions of Les Paul’s inventions, experiments and recording technique. Students can access additional Les Paul materials in the Listening/Media Library.

College of Saint Rose in Albany, NY, as a leader in providing recording industry education, will be building two recording stations that will allow students to experiment and create new work using the historic techniques that changed the music industry.

The Hearing Health Foundation, headquartered in New York, NY, is the largest nonprofit supporter of hearing research. The Les Paul Foundation Award for Tinnitus Research is awarded annually to the most promising researcher studying the cause of ringing in the ears.

Les Paul Middle School in Waukesha, WI with funding from the Les Paul Foundation will create a hands-on space where students can explore and experiment. Reflecting on the inventions and innovations that came from Les Paul’s garage, school officials decided to create a similar space for students to explore and experiment. The "Maker Space” will provide students a place to share resources and knowledge, network, and collaborate on projects.

Litchfield Jazz Camp and Festival, productions of the nonprofit Litchfield Performing Arts, of Litchfield, CT host Nicki Parrott of the Les Paul Trio to conduct master classes at the Camp in New Milford and at Litchfield Jazz Festival in Goshen August 5th. Nicki shows the relevance of Les Paul’s music and legacy to hundreds of young musicians through these institutions.

New Voices Middle School of Brooklyn, NY received funding for its innovative audio production program that trains students to manage all tech elements for student productions. Students will learn about Les Paul via resources from the Les Paul Foundation website.

Sharon Lynne Wilson Center of Brookfield, WI will include a presentation about Les Paul’s impact on current recording and guitar performing techniques at its annual Guitar Festival. The event has attracted competitors from 16 countries. A guided tour of Discovery World’s Les Paul House of Sound will be included for competitors.

Shell Lake Arts Center of Shell Lake, WI received funding for its Rock Band and Guitar & Bass program to help fund master teachers who work with students of all ages and abilities. Students spend a week at summer camp playing music and celebrating Les Paul’s inventions and philosophy following video showings.

Strings Attached of Ferguson, MO received funding to reinforce its project that addresses social barriers that prevent youth ages 5-17 in working class families from music education. Youth learn to play guitar, ukulele and mandolin using loaner instruments and perform at community gatherings.

VH1 Save the Music of New York, NY received funding to support its mission to ensure that EVERY kid in America has access to music education. Select schools will be invited to participate in a program that introduces Les Paul’s legacy via a challenge for students to create their own sound after they learn how Les created his own sound."

Women’s Audio Mission of San Francisco, CA trains and advances over 1,200 women and girls every year in music technology and recording engineering. Les Paul’s story inspires students for their hands-on electronics projects.

“Les Paul spent his life encouraging others to be innovative and created opportunities that made the world a better place,” said Michael Braunstein, Executive Director of the Les Paul Foundation. “The organizations that have received grants perpetuate many of his philosophies and ideas. He would be very proud that our grantees are continuing his legacy and perpetuating the mission of his very beloved foundation through their work.”

ABOUT THE LES PAUL FOUNDATION:
The mission of the Les Paul Foundation is to honor and share the life, spirit and legacy of Les Paul by supporting music education, engineering and innovation as well as medical research. The Les Paul Foundation is an approved IRC 501(c)3 organization that awards grants to music, music engineering and sound programs that serve youths. This year The Les Paul Foundation continues its celebration of the 100th Anniversary of Les Paul. The foundation also provides grants for medical research. The Les Paul Foundation also supports public exhibits which display Les Paul’s life achievements, events that engage fans and students and music releases and related launches which bring about excitement for the sound of Les Paul.  For more information go to www.lespaulfoundation.org.

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Give Thanks and Then Give Back

By Pallavi Bharadwaj

Black Friday, the Friday after Thanksgiving, is the official kickoff to the holiday buying season. Cyber Monday has become synonymous with online-only shopping deals on the Monday after the Thanksgiving weekend.

Giving Tuesday is a movement to create a national day of giving during the holiday season that will inspire philanthropy and encourage bigger, better, and smarter charitable giving.

HHF is thrilled to participate in Giving Tuesday this year on November 29th. 

This Giving Tuesday, please join HHF and support groundbreaking research to cure hearing loss and tinnitus. You can donate directly, or fundraise for a cure.

If you’re looking for some ideas to contribute to HHF on Giving Tuesday:

  • Post on Facebook and Twitter (and other social networks that you belong to) encouraging each of your friends to donate $1 to HHF. The average individual has 300 friends on Facebook which means that if each of your friends donates just $1 on Giving Tuesday, you can raise $300 in one day—it’s that easy!
  • Contribute to an item on our Wish List and give our researchers the tools they need to conduct their studies.
  • Host a potluck dinner party and invite your family and friends to join you by bringing a dish and making a donation to HHF.
  • Hold a bake sale at your workplace or your child’s school and advertise that the proceeds will be donated to HHF.
  • If you play a musical instrument, ask for donations for your music practice that day.
  • Take some time to burn those excess Thanksgiving calories and go for a run, swim (indoors of course!), or bike ride fundraising for every mile accomplished.
  • Make a donation to HHF in honor or in memory of someone close to you.
  • You can make gifts of appreciated stocks too.  

    Do you have other ideas to fundraise for a cure?  Please share with us in the comments!
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Give to HHF this #GivingTuesday

By Laura Friedman

#GivingTuesday is an international day of giving that kicks off the holiday giving season, is November 29th!

Hearing Health Foundation (HHF) wants to thank you for your support of our research programs, such as the Hearing Restoration Project (HRP) and Emerging Research Grants (ERG). Your support enhances the lives of millions of Americans. Thank you!

 

 

Here are some of our successes, dating back to our founding in 1958:

  • HHF is the largest non-profit funder of hearing research in the U.S.

  • HHF-funded research has led to the development of cochlear implants and treatments for otosclerosis (abnormal bone growth in the ear) and ear infections.

  • n 1987, HHF-funded researchers discovered that chickens regenerate their inner ear hair cells after damage and mammals do not. This led to the development of the HRP in 2011.

  • In the 1990s HHF advocated for Universal Newborn Hearing Screening legislation, to detect hearing loss at birth. Today, 97% of newborns are tested, up from 4% in 1994!  

The question of finding a cure for hearing loss is not if, but when. 

You can change the course of hearing and balance science and
helps us find better therapies and cures by giving today.

Here are some ways you can #HearTheHope this holiday season:

Post that you gave to HHF on social media, such as Facebook or Twitter, and encourage your friends to give as well.

  • Post that you gave to HHF on social media, such as Facebook or Twitter, and encourage your friends to give as well.

    • The average person has 300 friends on Facebook which means that if each of your friends donates just $1 on Giving Tuesday, you can raise $300 in one day—it’s that easy!

  • Let your talents and interests lead you to your own fundraiser for HHF through our website! No event is too large or small. Here are some ideas for inspiration:

    • Host a potluck and ask your guest bring a dish and make a charitable contribution to HHF.

    • Organize a bake sale or golf outing with the proceeds will be donated to HHF.

    • Burn excess Thanksgiving calories and go for a run, swim (indoors of course!), or bike ride, fundraising for every mile accomplished.

Have other ideas or questions for us? E-mail us at Development@hhf.org.

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