News for Supporters and Friends
2018 WINTER EDITION
Focused on a New Vision for Pittsburgh by Carrie Fogel
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Evening view of the New UPMC Vision and Rehabilitation Hospital rendering
In a major announcement on November 3 of 2017, UPMC unveiled its plan to build three state-of-the-art specialty hospitals that would offer patients in Western Pennsylvania the very best in healthcare. One of these hospitals will be located on the UPMC Mercy campus in the Uptown neighborhood of Pittsburgh and will be dedicated to Vision and Rehabilitation. This investment is a major initiative in the clinical and scientific prowess of the UPMC Eye Center and University of Pittsburgh Department of Ophthalmology, led by its Chairman, José-Alain Sahel, MD.
r. Sahel explains that this new facility is one where clinicians and researchers will work together toward the common goal of maintaining and restoring vision. “This space was fundamental in accomplishing what I set out to achieve when I came to Pittsburgh. Researchers and clinicians require a close proximity to one another to have the kind of productive interactions that are necessary to allow for the type of cross-pollination that makes the Institute in Paris so successful.”
In This Issue Life Saving In Utero Surgery
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Pitt – Building the Best Team for Macular Degeneration
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Sharing What We Learn from Cancer Survivors
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The McGuinn Retinal Fellowship – much needed support for Dr. Sahel
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She was Never a Shrinking Violet – In Memoriam
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Expanding the Albert C. Muse Prize for Excellence in Ophthalmology & Otolaryngology
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Personalizing Treatment Plan for Voice
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IRA Charitable Rollover
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From the beginning, there were clear requirements for the location of the new Vision Institute. Dr. Sahel explained that access to an already existing facility was key, in order to capitalize on resources already in place. The new building would also have to be near the University of Pittsburgh’s main campus in Oakland, as many of the researchers and physicians also hold positions as teaching faculty. Most importantly, stresses Dr. Sahel, was the need for a new space that was accessible to the patients for whom the facility was being built. Many visually impaired individuals use public transportation, so access to a variety of bus routes was critical. In addition, the building itself would need to have direct street access and be easily navigable to those using assistive devices and other methods that would allow them to access the building independently. Fortunately for Dr. Sahel and his Department, he and the institution were able to make certain that these requirements were met and even exceeded with the opportunities the eventual site can provide in terms of community engagement. Dr. Sahel explained that, “as soon as I met the leadership and staff at UPMC Mercy, I sensed that this hospital had been built on the premise of humanistic, holistic and patient-centered care, which aligned with our values.” Mercy Hospital has been a fixture in the Uptown neighborhood of Pittsburgh for generations and would be an excellent resource to rely upon. Dr. Sahel soon discovered the proximity of other notable institutions with which he was interested in partnering, the most important being Blind and Vision Rehabilitation Services, which is Pittsburgh’s nationally-acclaimed rehabilitation program designed to help people with vision loss gain employment and work Continued on page 5
Life Saving In Utero Surgery by Carrie Fogel
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ediatric otolaryngologists are skilled at caring for the youngest and most fragile patients. The experts within the Department of Pediatric Otolaryngology at the University of Pittsburgh and UPMC Children’s Hospital of Pittsburgh handle many types of complicated cases in babies as young as a few hours old, but this team has gained special recognition for their expertise in performing highlyspecialized, extremely risky surgeries on babies who are still partially in utero. Dr. Jeffrey Simons, Professor of Otolaryngology, and Dr. Allison Tobey, Assistant Professor of Otolaryngology are surgeons who specialize in surgeries that help babies and children with the ability to breathe through the normal airway. On rare occasions, a condition arises while a baby is still in utero that causes the fetus’ airway to become blocked. These blockages are congenital disorders and may be either growths or tumors, or can be caused by an underdeveloped jaw, where the airway becomes compressed or obstructed. By using fetal ultrasound testing, doctors can monitor these conditions and decide what course of action to take. To ensure a safe birth for the baby with this condition, and safety for the mother, a highly coordinated plan for birth and surgery must be formed. Dr. Simons and Dr. Tobey have performed a number of these procedures, known as EXIT procedures, along with teams from several
Jeffrey Simons, MD and Allison Tobey, MD
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other medical specialties in an effort to give both mother and child the best possible chance for a safe delivery. EXIT (Ex Utero Intrapartum Treatment) procedures involve several medical teams for a single procedure and are therefore a feat of interdisciplinary care and coordination. EXIT is a special type of Caesarean section, one in which the baby is partially delivered; only the head and neck are exposed in order to use maternal-fetal circulation from the mother. Only a highly experienced, wellcoordinated team can do this efficiently. Dr. Simons explains the procedure, “We try first to perform an endotracheal intubation with a variety of techniques to secure the airway. If that does not work, we then proceed with performing a tracheotomy. Once the airway is secured, we can examine the lungs with an ultrasound to ensure that they are inflating properly. Once successful ventilation is confirmed, the baby is fully delivered, and resuscitation work continues over at the neonatal bassinet while the mother is simultaneously being cared for.” Along with pediatric otolaryngology, there are surgeons and specialists present from Maternal Fetal Medicine, Neonatology, Pediatric General Surgery, and Obstetric Anesthesiology, which can entail upward of 40 or 50 individuals, physicians, nurses, and technicians in the operating room. “Care truly has to be highly coordinated and efficient--
every person in the room has a specific role that they have been highly trained to follow. To aid in the teams’ coordination, the WISER Institute at the University of Pittsburgh was enlisted with the goal of improving the procedure safety through simulation. The WISER Institute uses high-tech simulation so that these procedures can be perfected through practicing several different unplanned scenarios that can occur during surgery. By doing this type of preparation, surgeons improve their responses and can then share their knowledge with colleagues and others in the field. Drs. Simons and Tobey believe this training is essential to continue to sharpen the skills of those performing the procedure. Dr. Tobey explained that “given the infrequent occurrence, the high-risk nature of EXIT procedures and need to coordinate actions of multiple providers from different disciplines, simulation training is an excellent way to allow caregivers a means to practice and improve patient care.” In addition to continuing their work with the WISER Institute, the EXIT team wants to pursue research into knowing the best timing for the procedure, where both mother and baby have the best chance at a healthy life post-delivery. “Ideally, we like to wait to deliver until 37 weeks, so the child is stronger and more developed, but it is hard to determine when the right time is, we have to balance the size and threat of the mass with the need for further fetal development.” Dr. Simons explains that by doing a broad multi-institutional study with other medical centers, experts can come together to determine the best practices and clinical care pathways and create a more comprehensive protocol. The expertise and resources that exist within the University of Pittsburgh and UPMC have positioned these EXIT procedure teams as leaders in the field of complex and specialized surgical procedures for children prenatally diagnosed with life threatening airway problems.
Pitt – Building the Best Team for Macular Degeneration by Paul Stabile
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In December of 2016, Dr. E. Ronald Salvitti extended his commitment to the Department of Ophthalmology at the University of Pittsburgh by endowing the Jennifer Salvitti Davis, MD Chair in Ophthalmology Research, to honor his daughter, an Ophthalmologist and a member of his practice. Debasish Sinha, PhD was awarded this chair when he was appointed to the Department. Dr. Sinha relocated his research team from the Wilmer Eye Institute at The Johns Hopkins University School of Medicine in Baltimore to the University of Pittsburgh School of Medicine. Dr. Sinha and his scientists are working to develop new treatments for agerelated macular degeneration (AMD). His laboratory continues to study the role of retinal pigment epithelial (RPE) cells in maintaining healthy vision. These cells both nourish the overlying photoreceptor cells and remove waste products from the surrounding environment. This accumulation of waste products results in self-degradation of RPE, ultimately leading to vision loss through loss of photoreceptors — this is an underlying mechanism of dry AMD. Autophagy helps RPE cells dispose of and recycle “used”
AMD is the leading cause of blindness among the elderly, and is a significant public health problem in Western societies. Due to the substantial number of patients with early AMD, a new treatment that targets early
disease
would
have
the greatest benefit against AMD and at a stage before vision is lost.
Members of the Macular Degeneration Laboratory, from left to right, include: Sayan Ghosh, PhD, Peng Shang, PhD, Debasish Sinha, PhD, Meysam Yazdankhah, PhD, Stacey Hose, Imran Bhutto, MD, PhD, and Nadia Stepicheva, PhD. Not pictured: Joseph Weiss parts of the retina, including photoreceptor end segments, which burn out and need to be discarded about every ten days. “We are developing novel therapies for early AMD by modulating the lysosome/autophagy pathway in RPE,” said Dr. Sinha. As RPE cells age, their lysosomes gradually lose the ability to efficiently digest and clear ingested debris. The goal is to identify therapeutic compounds that can rejuvenate functionality of the aging RPE, thus slowing the progression of the disease. He is also studying the role of lysosomes. The lysosomal efficiency of degrading cellular components declines with age and when sufficiently impaired, is associated with AMD. Finding ways to regulate these lysosomes or the proteins that impact them has become a focus as well. They have begun using mice animal models to explore how the RPE cells remain healthy through a process which eliminates toxins and debris from cells and regulates the immune system in AMD. He is also continuing to identify new immune based targets for the treatment of AMD.
The studies conducted in Dr. Sinha’s laboratory have great clinical significance, since they can provide a novel target for the development of therapeutic strategies to delay the development of pathologies seen in early AMD. AMD is the leading cause of blindness among the elderly, and is a significant public health problem in Western societies. Due to the substantial number of patients with early AMD, a new treatment that targets early disease would have the greatest benefit against AMD and at a stage before vision is lost. Dr. José-Alain Sahel, Chairman of the Department of Ophthalmology, has a goal of expanding the research effort in the new Vision Institute in Pittsburgh. One of his key areas of focus is retinal research, specifically, research surrounding macular degeneration and other age-related diseases of the eye. Dr. Sinha’s funded research achievements and publications in this area are what led Dr. Sahel to know Dr. Sinha’s research would be a great fit for the vision he has for the future. 3
Sharing What We Learn from Cancer Survivors by Carrie Fogel
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When a patient receives a diagnosis of cancer of the head and neck, he or she knows that they have a long road ahead of them. Treatments for these cancers can involve the need for surgery to remove diseased tissue, chemotherapy, radiation or a combination of some or all of these options. While this diagnosis is devastating, the survival rate is ever increasing due to the advances in cancer treatment that are available to us here in Pittsburgh. Still, patients with cancer of the head and neck face possible complications after treatment that many would never predict. Because the population of patients with cancer of the head and neck is growing at an epidemic rate, due in large part to the growing population of adults whose cancer is caused by the HPV virus, Dr. Jonas Johnson, Chairman of the Department of Otolaryngology, and his Survivorship Clinic Team felt that it was imperative to hold a conference to convene some of the countries’ leading experts in survivorship care. Led by Dr. Jonas Johnson and Dr. Marci Nilsen, an Assistant Professor for the Department of Acute and Tertiary Care in the School of Nursing, the University of Pittsburgh Department of Otolarynology’s Survivorship Clinic hosted the first-ever Symposium for Survivorship after Cancer of the Head and Neck on August 6 and 7, 2018. The purpose of the symposium was to invite practitioners and researchers from around the country to provide fundamental information necessary for a comprehensive
Karen Losego, PT, DPT, CLT-LANA, Mike and Patty Kelley, and Marci Lee Nilsen, Ph.D., RN, CHPN, attending the Symposium for Survivorship after Cancer of the Head and Neck. approach to survivorship care of patients who had cancer of the head and neck. More than 100 clinicians, researchers, and patients from Pittsburgh and around the nation were in attendance. Panel discussions were held after each section and included patients themselves, who shared first hand their experience with recovery from treatment for cancer of the head and neck and the challenges they continue to face, even years after treatment.
The purpose of the symposium was to invite practitioners and researchers from around the country to provide fundamental information necessary for a comprehensive approach to survivorship care of patients who had cancer of the head and neck. More than 100 clinicians, researchers, and patients from Pittsburgh and around the nation were in attendance. 4
Several important topics in survivorship care were discussed, including: • Living with dysphagia (swallowing disorders) and innovative treatments for this condition. • Musculoskeletal dysfunction in patients who have been treated for cancer of the head and neck. • Financial toxicity and financial burden for patients (and families) with cancer of the head and neck. • Hearing impairment and oral health in the head and neck cancer survivor population. • Suicide and social isolation after cancer of the head and neck. The symposium concluded with a comprehensive review and a look into the future, led by Drs. Johnson and Nilsen. We are truly fortunate to have their expertise leading our Department in such excellent, forward-thinking and patient-centered care for patients who have had cancer of the head and neck.
The McGuinn Retinal Fellowship – much needed support for Dr. Sahel by Heather Chronis Danek
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arty McGuinn approached supporting retinitis pigmentosa research in the Department of Ophthalmology at the University of Pittsburgh School of Medicine the same way he has approached every major decision in his life – with careful thought and consideration, extensive research, and, finally, with a wholehearted commitment to move forward. For Mr. McGuinn, retired Chairman and CEO of Mellon Financial Corporation (now BNY Mellon), this research was utterly personal as his son, Patrick, married a woman whose family carries the retinitis pigmentosa gene. Thoughtfully considering how this could potentially affect his daughter-in-law, Ilana, he began to engage José-Alain Sahel, Chairman of the Department of Ophthalmology, and the Eye & Ear Foundation in October 2016 to learn more. As he attended a variety of educational events in the Department of Ophthalmology with the Eye & Ear Foundation, both in Pittsburgh and Florida, Mr. McGuinn began to get a sense of the scientific rigor that is applied to all research here. Dr. Sahel, a world leader in retina research and treatments, had a unique idea for Mr. McGuinn– a two-year Retina Fellowship with a primary focus on retinitis pigmentosa. The research would include clinical care, advanced imaging,
gene analysis and development of novel therapies that are complementary to each other and have the potential to enhance the desired outcome of restoring visual function in patients with retinal diseases and specifically retinitis pigmentosa. The Clinical and Research Fellow would be involved in all aspects of the project and would work closely with a large research team in both Pittsburgh and abroad. This past July, Mr. McGuinn established the Martin McGuinn Retina Research Fellowship in the Department of Ophthalmology. The first of its kind at the University of Pittsburgh, the singular focus of this fellowship has the potential to change the lives of many people with retinitis pigmentosa both in Pittsburgh and around the world. “Dr. Sahel is a recognized leader and is building a world class team and, so I am excited to support this important work,” stated Mr. McGuinn.
Martin McGuinn
This past July, Mr. McGuinn established the Martin McGuinn Retina Research Fellowship in the Department of Ophthalmology. The first of its kind at the University of Pittsburgh, the singular focus of this fellowship has the potential to change the lives of many people with retinitis pigmentosa both in Pittsburgh and around the world.
Continued from page 1 their way toward independence. Duquesne University is also a close neighbor. The Uptown neighborhood itself has been another draw for Dr. Sahel, who hopes that the Vision Institute could help rejuvenate the community through thoughtful and community-centered development. UPMC has detailed the plans for the building, which will be situated on Locust Street between Marion and Van Braam streets and will connect to Mercy Hospital
via a pedestrian bridge. The building will be comprised of 10 stories, housing clinical, surgical and research activities and technical support. The building’s aesthetic features were carefully planned in an effort to make the space attractive and educational. Plans include art installations and galleries that will be designed in collaboration with community artists and the Carnegie Museums of Art. The first floor will act as an easy-access open space, with retail shops, a café and dedicated emergency rooms. According to
Dr. Sahel, all of the space was fully designed to meet the navigational needs for visually impaired people, to reduce clinic wait times and to meet the healing and multisensory needs of all patients. Green space is a key element; with outdoor spaces dedicated for patients, such as a healing sensory garden, a rehabilitation garden shared with the Institute of Rehabilitation and a publicaccess park.” The new UPMC Vision and Rehabilitation Hospital is set to open 2021.
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She was Never a Shrinking Violet In Memoriam by Lawton Snyder
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n October 10th we were all very saddened by the passing of our dear friend, Violet (Vi) Soffer. Vi was one of the first people I met when I came to the Eye & Ear Foundation in 2010. I remember my first discussion with Vi very well, because she understood how devastating it is to lose vision, as she cared for her husband Joe during his final years. Joe had both macular degeneration and glaucoma, leaving the couple to feel helpless as Joe’s vision loss progressed. When I met Vi, Joe had
Lawton Snyder and Vi Soffer recently passed, and she was committed to making a difference for others through major contributions to research in vision science and as a member of the Eye & Ear Foundation Board of Directors. Vi felt it was important to provide an annual venue for others to learn about the need for research to advance care for people with vision loss. Vi and more recently, her son James, have been the hosts of the Joseph Soffer Memorial Lecture, which held its ninth annual event this past May. The Soffer Lecture has provided a forum for
our top scientists to discuss the importance of research to restore vision to an audience of interested contributors and friends, with Vi graciously present for each one of these events. So many of our faculty and friends knew her and loved her spunkiness and joy for life. Vi’s loss was felt by all of us at the Eye & Ear Foundation, and for Pittsburgh this loss will also be felt as Vi contributed to dozens of local non-profit organizations. There will never be another Vi Soffer!
Expanding the Albert C. Muse Prize for Excellence in Ophthalmology & Otolaryngology by Paul Stabile
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he Albert C. Muse Prize for Excellence in Ophthalmology and Otolaryngology was established in 2001 in recogniton of longtime Eye & Ear Foundation Board Member and former Chairman of the Board, Al Muse. Thanks to Mr. Muse’s unwavering support, this prize has since grown globally into a prestigious and recognized honor within these two fields. With the 2018 Muse Prize, a new award was established. Each year, we will now recognize two recipients. The original Muse Prize honors a world leader in research and advancement of care for Ophthalmology or Otolaryngology in alternating years. The new Muse Award honors a regional (Western Pennsylvania) leader for innovation and service in these fields. On October 3rd, we celebrated the achievements of Mark Humayun, MD, PhD, Director of the USC Ginsburg Institute and CoDirector of the USC Roski Eye Institute with the Muse Prize. Receiving the inaugural 2018 Muse Award in Ophthalmology was E. Ronald Salvitti, MD, Founder and Medical Director of the Southwestern Pennsylvania Eye Center.
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Deepinder Dhaliwal, MD, Albert Muse, E. Ronald Salvitti, MD (Muse Award recipient), and George Fechter (Chairman of the Eye & Ear Foundation Board of Directors)
Lawton Snyder (CEO, Eye & Ear Foundation), Albert Muse, and Mark Humayun, MD, PhD (Muse Prize recipient)
Personalizing Treatment Plan for Voice by Jackie Gartner-Schmidt, PhD and Amanda Gillespie, PhD, CCC-SLP
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oice therapy is the treatment aimed at modifying vocal behaviors that cause or contribute to voice disorders and is the standard of care for the nearly 88 million people in the United States who will suffer from a voice disorder. Although voice therapy is effective in treating voice disorders initially; patients drop out of voice therapy at alarming rates of close to 65%. Furthermore, 70% of patients experience a return of their voice disorder following discharge. These limitations also contribute to the high costs associated with treating and re-treating voice disorders. The question is why do patients stop attending therapy? Dr. Jackie Gartner-Schmidt, Co-Director of the University of Pittsburgh Voice Center and Dr. Amanda Gillespie, now Co-Director of the Voice Center at Emory University, aim to understand this trend to better serve
patients. Traditional voice therapy programs prescribe anywhere from 6 to 26 sessions. Therapy builds hierarchically, starting with breathing and relaxation exercises and progressing to the production of single sounds, words, phrases, and advancing, finally, to conversation. However, patients report that this final step, transfer of voice skills to conversation, is the most difficult part of voice therapy. Perhaps, if therapy began at the conversational level, more patients would follow through with their entire series of therapy sessions. Said differently, if therapy was more relevant to the patient (i.e., modifying their voice in conversation) and faster in changing vocal behaviors in speech, perhaps patients would not drop out of therapy.
Conversation Training Therapy
facilitates
learning
and
The motivation for the University of Pittsburgh Voice Center’s Conversation Training Therapy (CTT) study was based on this premise. It was initially developed by Drs. GartnerSchmidt and Gillespie and evolved by the Voice Center’s speech-language pathologists (SLP) and 5 other voice specialized SLPs at different voice centers across the nation. Information was also collected from voice therapy patients themselves to create a therapy program that is relevant to the patient’s complaint and is able to help them more quickly. Most importantly, this therapy program drastically decreases the number of sessions needed to achieve long-lasting results.
retention
more-so
than
Conversation Training Therapy (CTT) is based upon the same motor learning principles that are used in athletic training. Because voice therapy is a motor skill, the principals of motor learning serve as the foundation for CTT. Motor learning theory states that training complex skills as a whole (e.g. conversation) facilitates learning and retention more-so than breaking these complexities down into simple components (e.g. breathing, posture, word level stimuli).
(CTT) is based upon the same motor learning principles that are used in athletic training. Because voice therapy is a motor skill, the principals of motor learning serve as the foundation for CTT. Motor learning theory states that training complex skills as a whole (e.g. conversation)
breaking these complexities down into simple components (e.g. breathing, posture, word level stimuli). The research team just finished an NIH grant awarded to study CTT in 56 patients with voice disorders. The investigation on The Efficacy of Conversation Training Therapy represents the first study to demonstrate efficacy of a nonhierarchical, conversation-based treatment program demonstrating significant results in just 2 voice therapies and maintained 3 months later. Results of the current research are potentially paradigm-shifting with regards to how voice therapy is delivered, with less time spent in treatment, less money spent by the healthcare system, and a greater quality of life for people with voice disorders. The long-term goal of this research is to conduct multi-center comparative effectiveness trials comparing CTT to traditional voice therapy programs in people with voice disorders.
Dr. Jackie Gartner-Schmidt
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The season for giving is upon us. Now is a great time to consider the IRA Charitable Rollover The IRA Charitable Rollover
Benefits of this gift option
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Those who are age 70 ½ or older can make a gift from their IRA minimum distribution or from the IRA principal (traditional or Roth) of up to $100,000 to support The Eye & Ear Foundation.
• The gift counts against your required minimum distribution for the year.
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This works for both itemizers and non-itemizers.
Consider supporting a 501 (c)3 charitable organization, such as The Eye & Ear Foundation.
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The gift is excluded from taxable income — which is a nice tax benefit.
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It may prevent you from being pushed into a higher tax bracket and help avoid the limit on charitable deductions.
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It is easy to make — simply notify your IRA custodian.
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It minimizes the effect on cash flow; the gift is from your assets, not your checkbook.