New research program and website target an unrecognized patient population
PHILADELPHIA (February 27, 2014) – On Anosmia Awareness Day, the Monell Center announces “A Sense of Hope: The Monell Anosmia Project,” a three-year $1.5M fundraising campaign to support a research and advocacy program focused on anosmia, the loss of the sense of smell. The research goal is to identify the biological causes of smell loss in order to develop potential treatment approaches for this under-recognized condition.
According to the National Institutes of Health, approximately one to two percent of the American population reports a complete loss of the sense of smell. However, as no routine assessment of smell function exists, the incidence is likely to be considerably higher. Although over six million Americans likely are affected, scientists and physicians have little understanding of the underlying biological mechanisms causing a loss of smell.
As the leading research center devoted to understanding the mechanisms of smell, Monell is well-positioned to make a difference. “Monell’s olfactory scientists have both a great deal of interest and the necessary expertise for uncovering basic mechanisms underlying olfactory loss, regeneration of the system and treatment for loss,” said Gary K. Beauchamp, PhD, the Center’s Director and President.
Anosmia can occur by several different processes, including physical blockage within the nose, viral damage to the smell receptors, head trauma, and toxin exposure. Loss of smell also is frequently associated with aging and neurodegenerative diseases, including Alzheimer’s and Parkinson’s diseases. Some people are born without a sense of smell. Each type of anosmia has distinct implications concerning prognosis and viable treatment options.
To date, there has been almost no attention to this invisible disability. Even physicians often are not informed about anosmia and thus are not equipped to help patients when they present.
“Awareness of the importance of olfaction comes only when one loses the sense abruptly. Then it is clear that one has lost a major portal on the world,” said Beauchamp.
While the Center’s past research has increased understanding of varied factors related to anosmia, the new project represents a focused effort to address the condition.
Taking advantage of the unique ability of the olfactory receptor cells to regenerate across the lifetime, the Center’s first research under the new program focuses on identifying basic mechanisms of human olfactory stem cell regeneration.
Lead gifts from two donors with personal knowledge of anosmia jump-started the current research: the goal is to grow mature functional olfactory receptor cells from olfactory stem cells obtained from healthy humans. Once this is achieved, the next phase will involve developing transplantation techniques that potentially could lead to new treatment options.
However, because anosmia develops as a result of many different circumstances, other treatment approaches will be needed, necessitating additional research pathways. “We still are in the very early stages of understanding anosmia,” said Beauchamp.
To increase awareness about anosmia and its impact, Monell has launched a scrolling infographic-style website (www.monell.org/anosmiahope) created by Elefint Deigns, a California firm that specializes in strategic design for nonprofits and community organizations.
Elefint recently sponsored a contest in The Chronicle of Philanthropy, offering to design a scrolling web site to promote a compelling cause.
“We were excited by all the great organizations and stories that came our way. But of all the stories we heard, Monell’s story of anosmia intrigued our team the most. We felt that building an interactive one-page site would be a great way to introduce many more people to this overlooked problem,” said Matthew Scharpnick, co-founder and Chief Strategy Officer of Elefint Designs.
Monell also has incorporated educational material about anosmia into its website including an explanation of what is known about the underlying biologic causes of smell loss and information on the limited treatment options currently available. To learn more about anosmia visit www.monell.org/research/anosmia.