The Hearing
Restoration Project
A Groundbreaking Research Consortium to Cure Hearing Loss
A Cure for Hearing Loss
is Coming!
A
cure for hearing loss is at hand. Hearing Health Foundation, the largest non-profit funder of
hearing research, is leading a national, multi-institution research consortium called the Hearing
Restoration Project (HRP) that will develop therapies to cure hearing loss within the next 10 years.
This means that for many living with hearing loss a cure is possible within their lifetimes!
The promise of a real, biologic cure is focused on the inner ear hair cells that make hearing
possible. Most types of hearing loss are the result of damage to these hair cells, including noiseinduced hearing loss, age-related hearing loss and ototoxic hearing loss. Twenty-five years ago,
research funded by Hearing Health Foundation revealed something remarkable: birds have the
ability to re-grow damaged inner ear hair cells and spontaneously restore their hearing. In humans,
hearing loss is permanent once the hair cells are damaged.
The goal of the HRP is to develop a biologic cure by applying what we know about chickens
to people, and regenerating the hair cells in humans to permanently restore hearing. To achieve a
cure, we have assembled a consortium of 10 leading hearing loss research centers and research teams:
Baylor College of Medicine
Harvard Medical School
House Research Institute
Oregon Health & Science University
Stanford University School of Medicine
Stowers Institute for Medical Research
University of California, San Diego
University of Michigan
University of Washington
Washington University School of Medicine
Hearing Health Foundation is ideally positioned to lead this world-class consortium and deliver
on the goal of a cure. Since 1958, Hearing Health Foundation has led the way in supporting the
most cutting-edge research for the prevention, treatment and cure of hearing loss.
To support the Hearing Restoration Project, we will need to raise approximately $50 million
over the next ten years to fund the medical equipment, genomic testing, bioinformatics and
researchers needed to change the course of hearing loss forever. With funding for the HRP coming
exclusively from non-government sources, we now seek philanthropic gifts from our supporters
and from those who want to see a cure…..mothers, fathers, children, veterans, professionals and
people from every walk of life.
On behalf of Hearing Health Foundation, we thank you for your interest in our efforts and
hope that you will join us in finding a cure.
Sincerely,
Shari Eberts
Chairman
Hearing Health Foundation Board
2
Andrea Boidman
Executive Director
Hearing Health Foundation
Introduction
T
hroughout history every major medical breakthrough has been achieved from an infusion
of research dollars from individuals and institutions. From polio, to breast cancer, to
Alzheimer’s disease, great strides have been made when those affected come together to support
research. For those touched by hearing loss, there has never been a better time to mobilize to treat
and cure hearing loss.
For the first time, researchers are on track to develop a genuine, biologically-based cure for most
types of acquired hearing loss. We know that just as cochlear implants changed the treatment
options for those living with hearing loss, cell regeneration is the next wave of game-changing
hearing treatments.
With the top hearing research laboratories and researchers working together, sharing data, and
collaborating on their research through the Hearing Restoration Project, we will actually be able
to speed up the timeline for a cure from 50 years to just 10 years. This means that for many living
with hearing loss a cure is possible within their lifetimes!
Need: The Time is Now for All of Us Who Are Affected By Hearing Loss
As you read this, nearly 50 million Americans are living with some form of hearing loss that is
impacting their daily lives at home, at work, at play and at school. Even more astonishing is that
hearing loss is affecting people all across our society: 1 in 7 adults, 1 in 5 teenagers and 60% of our
returning veterans from Iraq and Afghanistan have a hearing loss. And, by 2030, the total number
of people living with hearing loss is expected to double.
Hearing loss affects people of every age and from every background: from newborn children,
to older Americans, to military personnel, to business professionals, to professionals in our
manufacturing and service sectors. And the causes of hearing loss are many: age-related, genetics/
family history of hearing loss, noise-induced, infections, trauma and toxic-induced hearing loss.
Regardless of the cause, hearing loss has a profound impact on the lives of those who live with it
and on their loved ones. Frustration, fear, isolation and depression are common for people living
with a hearing loss.
Right now there are limited treatment options for hearing loss, including hearing aids, assistive
listening devices and cochlear implants. However, these are not effective for everyone and the costs
to a person and family are significant. Currently, there are no cures for hearing loss.
Blindness separates
people from things;
deafness separates
people from people.
—Helen Keller
3
A New Way of Doing Things
F
or too many years, biomedical research has been conducted in relative isolation: one
researcher or one institution working alone to tackle major health issues. Today, we know
that research progress is enhanced by the collaboration of scientists with diverse areas of expertise.
Simply put, no single laboratory or institution has sufficient breadth of expertise and technology
to solve all problems.
Furthermore, medical researchers in cell regeneration and hearing science face greater competition
for funding each year and from a decreasing pool of funds from the National Institutes of Health
(NIH) and other large medical research funders.
Hearing Health Foundation is tackling these issues of medical research funding and
progress by focusing our efforts on a collaborative, targeted and fully-funded approach: the
Hearing Restoration Project.
Hearing Health Foundation:
Since 1958, the Leading Non-Profit Supporting Research to End Hearing Loss
The mission of Hearing Health Foundation is to prevent and cure hearing loss through
groundbreaking research. We are America’s leading source of private funding for research into the
science of hearing and balance. Since 1958 we have awarded approximately 2,000 grants totaling
over $26.5 million through our Emerging Research Grants program.
Deafness Research Foundation (now called Hearing Health Foundation) was founded in 1958
because of the vision, strength and determination of one remarkable woman: the late Collette
Ramsey Baker.
Collette Ramsey Baker.
After living with a substantial hearing loss for many years, at age 35 an early fenestration
operation restored Mrs. Ramsey Baker’s hearing. In gratitude, she wanted to donate money to a
national non-profit organization that was supporting hearing and balance research, but no such
organization existed at the time. That was when she decided to create a non-profit that could
support medical research to further hearing loss treatments, prevention and a cure.
Under her incredible leadership, we bestowed grants upon colleges and other research institutions
for research and improvement of hearing. Mrs. Ramsey Baker received letters of commendation
from many leaders, including Presidents Herbert Hoover and Dwight D. Eisenhower, as well as
Helen Keller and Cardinal Francis Spellman.
I want to see a cure
before I die. I’m so
excited for my children’s
future because of people
like you!
—Kille, mother of two kids with hearing loss
4
Since 1958, the organization has made incredible breakthroughs in research and care, including
the co-founding of the National Temporal Bone Banks Program, passing of the Universal
Newborn Hearing Screening legislation, contributing to the development of the cochlear implant,
and surgery for otosclerosis.
Hearing Restoration Project (HRP):
The REAL Promise of a Cure
H
earing Health Foundation has launched its most important research initiative ever: the
Hearing Restoration Project. Our goal is to deliver, for the first time, a genuine, biologic
cure for the millions of people living with hearing loss.
The project is based on the discovery funded by Hearing Health Foundation in 1987 that birds
spontaneously regenerate the hair cells necessary for hearing when those cells become damaged;
humans cannot. But recent discoveries in stem cell research and gene mapping may make now the
time to trigger hair cell regrowth in humans in the near future.
The Consortium Model
Through the Hearing Restoration Project, leading researchers have committed to our consortium
model – working together, fully sharing technologies, data, and credit – to discover the secret of
regenerating inner ear hair cells in humans. Their goal is nothing less than a cure for hearing loss.
The HRP is collaborative rather than competitive, and relies on the strengths of our researchers
towards a common goal. The consortium members are experts within their own right, and are
working individually on different aspects of regeneration—including nerve regeneration, stria
development, and hair cell regeneration across multiple species—and then pooling their resources
and findings to help find a cure for hearing loss through collaborative projects and data sharing.
If you really want to
cure hearing loss, hair
cell research is the
only game in town.
—Dr. Edwin Rubel, Department of
Otolaryngology, Graduate Program in
Neurobiology and Behavior, University of
Washington; Hearing Restoration Project
Consortium Member.
The Best and Brightest
The consortium is comprised of the best and
brightest researchers in hearing science from the
following institutions:
Baylor College of Medicine
Harvard Medical School
House Research Institute
Oregon Health & Science University
Stanford University School of Medicine
Stowers Institute for Medical Research
University of California, San Diego University of Michigan
University of Washington
Washington University School of Medicine
Hair Cells, Explained
HRP consortium members discussing
their latest collaborative research.
Hair cells are specialized sensory cells located in the inner ear. Hair cells in the cochlea convert
sound information into electrical signals that are sent to the brain. Once hair cells die or are
damaged – whether from noise, age, sudden deafness, or drugs – hearing is lost. Because hair cells
are not regenerated in humans or other mammals, most hearing deficits are permanent. Birds and
fish have the natural ability to regenerate damaged hair cells. Our challenge is to replicate this
regeneration in humans.
5
Our Research Strategy
C
onsortium members have highlighted two major issues with regard to our current
understanding of hair cell regeneration. First, it is clear that “supporting cells” of the inner
ear give rise to new hair cells after injury. Yet we have identified only a small number of molecules
that influence the ability of supporting cells to yield new hair cells.
Second, we know very little about how supporting cells change over time following hair cell
damage. This information is key for identifying potential targets for regeneration therapy.
Consortium members have identified two initial approaches to hasten discovery: cross-species
profiling of molecular changes in supporting cells after hair cell injury, and tracking the fate of
supporting cells after hair cell injury.
The focal points of present and emerging research efforts for the HRP are the supporting cells
and their genetic regulators. HRP members have chosen to conduct investigations across species
– zebrafish, chickens, and mice – because they hope to identify methods that control supporting
cell responses. The targeted responses for these studies will be promoting supporting cells to divide
and to form new hair cells, or to convert into hair cells without dividing (a process called direct
transdifferentiation).
The two general research phases outlined below are highly integrated
and involve the efforts of the majority of consortium members:
Phase I – The Discovery Research phase will seek to discover
1) the factors that block regeneration, and 2) the missing factors that
can promote regeneration.
One powerful way to identify the signals that prevent mammalian
supporting cells from forming new hair cells is to compare differences
among species with different capacities for regeneration. We will
identify key differences among birds, fish, and mammals with respect
to gene expression after hair cell damage.
Analyses will be done across laboratories, and massive amounts
of genomic data will be generated. Experienced specialists will help
extract the data, and raw and processed data will be posted online
for consortium members to view. This process will allow immediate
hypothesis generation and testing, which will hasten progress toward
our goals.
Diagram of the Inner Ear
6
There’s a way to do
it better—find it.
—Thomas Alva Edison, Man of the
Millennium and American Innovator who
lived with a severe hearing loss
Phase II – The Translational Research phase will involve testing therapeutic approaches in
live mammals. We expect that it will take five years for us to reach a point when these research
projects can begin. These projects will focus on manipulating specific target genes and pathways
in the mammalian organ or Corti and utricle. Results from these projects will indicate treatments
that will likely lead to improvements in hearing or balance function, first in animal models, and
later in humans.
Today, the Hearing Restoration Project consortium is actively working on its first four
collaborative projects to first unlock the secrets of inner ear hair cell damage and regeneration
across species including chicks, zebrafish and mouse.
Conclusion
Researchers estimate that with current levels
of funding in hearing science and without the
Hearing Restoration Project consortium, it
will take 50 years to achieve human inner ear
restoration. Today, through the collaborative
model of the Hearing Restoration Project
and our consortium of experts, we have the
opportunity to accelerate the research and
shorten the time for discovery to 10 years or
even less.
Hearing Restoration Project
Strategic Plan
Phase 1 Discovery Research
Years 1 - 5
Comparative genomics
Cell tracking analyses
Identify genes that drive supporting
cells to form new hair cells
Identify cells remaining in Organ of
Corti after damage
Animals that readily regenerate
We’re off to a strong start, but we need your
help. Join us today to help make hearing loss
a thing of the past.
Mature Zebrafish
Mature Chickens
Mouse
Organ of Corti
Degeneration
Developing Chicks
Developing Mouse
Genes
X, Y, Z
Mature Mouse
Animals that do not regenerate
Phase 2 Translational Research
Years 5 +
Drive remaining cells to form new hair cells
Regeneration
Genes
X, Y, Z
Damaged Mouse
Organ of Corti
Repaired Mouse
Organ of Corti
7
How You Can Help /
Funding Opportunities
R
arely have scientists had such a clear view of the nature of a cure for a major health issue. We
are tantalizingly close to it … yet there is much work still to be done. We need your help.
Please join Hearing Health Foundation and help us make hearing loss a thing of the past.
For more information and to learn more about funding opportunities contact:
The Hearing
Restoration Project
is the biggest reason
I contribute. Such an
organized effort, with
so many top-notch
scientists, provides
a real possibility that
Hearing Loss will
be cured.
—Anthony Bartoli,
a monthly donor who has hearing loss
Andrea Boidman,
Executive Director
[email protected]
(212) 257-6141
Doug Olson, CFRE
Director of Development
[email protected]
(212) 257-6144
Hearing Health Foundation
363 Seventh Avenue, 10th Floor
New York 10001-3904
or online at www.HearingHealthFoundation.org/JoinUs.
We’ve made it easy to support Hearing Health Foundation and the Hearing Restoration Project
in the way that is most convenient for you:
• Naming Opportunities
• Major Gifts
• Tribute Gifts
• Monthly Giving
• Fundraising Events: Fundraise for a Cure for Hearing Loss
• Workplace Giving
• Gifts of Appreciated Stock or through your IRA
• Planned Giving Through Your Estate Plans (Collette Ramsey Baker Society)
• Name a Research Grant
• Partner With Us (companies and community groups)
Hearing Health Foundation Board of Directors
Shari S. Eberts, Chairman; Mark Angelo; Robert Boucai; Judy R. Dubno, Ph.D.; Rebecca Ginzburg; Roger M. Harris;
David S. Haynes, M.D.; Elizabeth Keithley, Ph.D.; Richard Miyamoto, M.D.; Michael C. Nolan; Paul E. Orlin; Peter
Steyger, Ph.D.; Clifford P. Tallman, Jr.; Elizabeth Thorp; Ronald E. West, Nancy M. Williams.
Andrea Boidman, Executive Director.
Hearing Restoration Project Consortium Members
John Brigande, Ph.D.; Alain Dabdoub, Ph.D.; Albert Edge, Ph.D.; Andy Groves, Ph.D.; Stefan Heller, Ph.D.; Michael
Lovett, Ph.D.; Liz Oesterle, Ph.D.; Tatjana Piotrowski, Ph.D.; David Raible, Ph.D.; Yehoash Raphael, Ph.D.; Ed Rubel,
Ph.D.; Neil Segil, Ph.D.; Jennifer Stone, Ph.D.; Mark Warchol, Ph.D.
Hearing Health Foundation is a non-profit 501 (c)(3) tax exempt charity (Tax ID: 13-1882107).