Monday, February 24, 2014

An Exclusive Interview with Shari Eberts of Hearing Health Foundation

This post is a follow up to my previous post on the Hearing Loss Restoration project's new public service announcement. In this interview, Shari Eberts, Chairman of the Board of Directors for Hearing Health Foundation, answers my questions submitted through email. 

So you can put a face with the name, here is a brief YouTube video of Shari discussing her passion for the Hearing Loss Restoration project.  My interview with Shari starts below the video.


Sarah: Shari, what would you like to tell the readers of Speak Up Librarian about yourself and how you came to be involved in hearing loss research and the Hearing Health Foundation?

Shari: As someone who lives with hearing loss everyday, I am personally thrilled with the prospects for a cure. Life with hearing loss can be frustrating. Sometimes you miss the joke when everyone else is laughing and sometimes you miss important information because you don't hear it. Supportive family and friends can make living with hearing loss easier, but a genuine cure would be life changing. After having met and worked with our consortium scientists for these past two years, I am confident that we will have a cure in my lifetime. I am counting the days.

I first became involved with HHF in 2010 when I retired from Wall Street and was searching for a way to give back in the area of hearing loss. I have a genetic hearing loss, as did my father and grandmother, and I knew this was an area where I could make a difference. When I first heard about the Hearing Restoration Project, I was thrilled, and immediately wanted to be a part of it. I am in my third year as Chairman of the Board of Hearing Health Foundation and am even more excited about the prospects of a cure for hearing loss and tinnitus.

Sarah: When can those of us with hearing loss expect to see a biological restoration cure available at our local pharmacy?

Shari: HHF’s founder, Collette Ramsey Baker, was steadfast in her support of funding for new technologies and treatments for hearing loss, despite objections and doubts from supporters and those in the industry. Because of that commitment, HHF has been a leader in driving new innovations and treatments for people with hearing loss for more than fifty years. This includes funding research that led to the development of cochlear implants and many of today’s standard treatments for otosclerosis (abnormal bone growth in the ear) and ear infections. Today, HHF continues to support groundbreaking research in hearing, through the search for a biological cure for hearing loss and tinnitus.  

The HRP consortium of scientists has developed a strategic research plan to develop a cure for hearing loss and tinnitus in 10 years. This three-phase plan starts with discovery research and culminates in clinical trials. The plan, developed specifically by the HRP scientists and updated to incorporate new findings and approaches, is a living document meant to guide but not limit the work. Relevance to this strategic plan is one of the criteria for a project to receive HRP funding.

This strategic research plan assumes a 10-year time line to a cure for most types of hearing loss through the regeneration of inner ear hair cells. Currently we are in phase one of the plan, which is the discovery phase.   

Even though we are in the early stages of the research, we think it is very important that the public learn about our efforts. We want them to know that there is hope for a cure, and that there are researchers who consider curing hearing loss and tinnitus to be their life’s most important work. We hope our marketing efforts will help bring attention to the issue, raise awareness of the prospects for a cure and inspire other scientists and laypeople to join us in our support of this important research, so that we can find the cure as soon as possible.

Sarah: Will this cure benefit only certain levels of hearing loss – (for example, mild to moderate) or will it be effective for the full spectrum of loss (mild to profound)? 

Shari: There are two broad forms of hearing loss:  

Conductive Hearing Loss is caused by any condition that blocks or impedes the conveyance of sound through the outer or middle ear. The result is a reduction in the sound intensity that reaches the cochlea. Common causes include ear infections, a perforation in the eardrum, or even buildup of earwax. Generally, conductive hearing loss can be treated with a complete or partial improvement in hearing. 

Sensorineural Hearing Loss commonly occurs due to an injury or degenerative change in the inner ear and is currently permanent. Damage to the hair cells in the inner ear is the most common type of sensorineural hearing loss. The Hearing Restoration Project is focused on the cure for sensorineural hearing loss, through the regeneration of these damaged inner ear hair cells, and with it the regeneration of hearing.   

The amazing thing is that regeneration happens naturally and very robustly in almost all animals – mammals are the exception.  This makes HHF and the researchers confident that we will find a way to stimulate this regeneration in mammals, including humans. While ten years may seem like a long time, and it is for someone like myself who lives with hearing loss every day, it is realistically within my lifetime, and that gives me hope and excites me for the future. While we wait for the cure, we encourage people with hearing loss to seek treatment for the condition through hearing aids or other means, so that they can enjoy the highest quality of life possible, while they wait. 

Sarah: How can people with hearing loss get involved with raising awareness of this potential biological cure?

Shari: We hope our message will give people hope that the best scientists in the field see the cure for hearing loss and tinnitus as an important issue, and that they are working to make that a reality as soon as possible. We encourage people to visit our website, www.hhf.org to learn more about the research we are doing, the expected timetable, and to see for themselves the robustness of the research plan and the quality of the scientists that are attacking this issue.  We hope to have people join us in raising awareness for this work and in supporting our research efforts. 

Sarah: How can readers of Speak Up Librarian get involved with the Hearing Health Foundation? 

Shari: There are lots of ways for people to get involved with HHF!   
  1. Stay up to date on all the latest news from the lab by liking us on Facebook and following us on Twitter.
  2. Sign up for our informative monthly e-newsletter. 
  3. Subscribe to Hearing Health Magazine, our award-winning leading consumer publication on hearing loss.  Get the latest on research breakthroughs, strategies to manage hearing loss, personal stories, hearing technologies and products, and features on seniors, pediatrics, veterans, musicians and more. 
  4. Inspire others by sharing your personal story and draw comfort from the stories of others. 
  5. Create a fundraising event or giving page
  6. Make a tribute gift to honor a loved one with hearing loss or a favorite audiologist.
  7. Support our work with a tax-deductible donation.
Sarah: Thank you, Shari, for taking the time to share information about Hearing Health Foundation and the Hearing Restoration Project with my readers. I also want to let readers know that Dr. Andrew Groves will be discussing the Hearing Restoration Project at the Hearing Loss Association of America conference in Austin, Texas this summer.

6 comments:

Liz Fisher said...

Interesting post. I am also following them on their FB page now.

IR said...

I really like how they are marketing and trying to get hearing issues out there and their hearing restoration project also.

Unfortunately, I'm still skeptical on curing hearing loss in 10 years. I realize they have three phases. The first one studying how non-mammals regenerate, the second being how to regenerate mammal ears, and then the third clinical testing.

I think if phase one can be completed in 10 years, then phase two might take 10 years also, and this will mean perhaps a cure or significant treatment in 30-40 years.

But who knows, I'm not a researcher, so maybe it's definitely a possibility in 10 years. The genvec trial I mentioned elsewhere will be interesting if it works at all.

I don't know if you have seen this or not, but this is the brochure from Stanford that highlights the ways they are trying to treat or cure hearing loss.
https://hearinglosscure.stanford.edu/wp-content/uploads/2013/04/HearingLossBrochure.pdf

SpeakUp Librarian said...

Thanks for your comment, Liz. Following HHF on Facebook is a good way to keep up-to-date on the project's progress.

SpeakUp Librarian said...

Hi IR,

Thanks for the additional information from Stanford. I was unaware of their project.

With the increasing number of people experiencing hearing loss, there is a huge market for this cure. I'm wondering what the hearing aid manufacturers think because a cure would likely put them out of business.

A common thread I've noticed between the research projects of HHF and Stanford is the idea of collaboration. Academic libraries are now facing a greater demand for open access to scientific data. I'd like to think that scientists working together and sharing information would facilitate the work for a cure.

Sarah

IR said...

Yes, Stanford has a project to cure hearing loss also, here's the link if you haven't looked at it http://hearinglosscure.stanford.edu/ They also have a facebook page too.

I think more awareness needs to be spread about the HHF and Stanford. After all, if there is more awareness, there will be more donations, and if there are more donations, then there will be more research. So more research could mean getting to treatments or cures quicker. I wouldn't be surprised if a majority of people with hearing loss didn't even know about Stanford or the HHF. So as they say, spread the word.

I agree the market is huge. The first company to put out a treatment to even partially restore some hearing will make a lot of money. There are also clinical studies being done on drugs for tinnitus and presbyscusis (age related hearing loss) right now.

Unless there is a cure to restore hearing back to within normal range I think hearing aids will still be around. However, a treatment to restore say even 20db levels would be a pretty big deal. But while hearing aids cannot replace natural hearing I wonder what they will be like in 20 years.

I agree with the collaboration effort by the HHF's Hearing Restoration Project.

Yeah, so hopefully something good happens in the next 10 years.

IR said...

Oh, one another thing I wanted to add was that amazon has a program called smile. Pretty much every time you shop through amazon via their smile program, smile.amazon.com, they donate a percentage of your purchase to a charity of your choice. You just have set your charity, HHF is available, and shop at smile.amazon.com instead of amazon.com.