UCSF’s Center for Gould Syndrome!

A news story featuring how Dr. Douglas Gould’s work lead to the opening of the world’s first center of excellence to help families of children with Gould Syndrome is featured on UCSF’s News!

We are pleased to announce a story about the opening of the First Center of Excellence for Gould Syndrome, featuring our Dr. Douglas Gould and his research efforts leading to this new center to help families with children affected by this rare genetic disorder. This center is also includes pediatric ophthalmologist Dr. Alejandra de Alba Campomanes and is the culmination of years of Dr. Gould’s research group’s translational research work to understand the biological functions of a multi-system disorder that is caused by mutations in the genes encoding type IV collagen alpha 1 (COL4A1) and COL4A2. Dr. Gould is a Professor of Ophthalmology and Anatomy and a member of the Institute for Human Genetics, Bakar Aging Research Institute, and Cardiovascular Research Institute.

Learn more about their research here: https://ophthalmology.ucsf.edu/gouldlab/ and read the exciting full news story here: https://www.ucsf.edu/news/2024/02/427141/ucsf-opens-worlds-first-center-excellence-gould-syndrome 

A Shining Light for Cataract Patients

(above) Michael V. Drake, MD, President of the University of California with Daniel Schwartz, MD

Infographic about donation impact with QR code.

This past spring, a remarkable breakthrough in cataract technology brought renewed hope to patients seeking improved vision. All May See’s President Emerita, Kathleen Rydar, underwent cataract surgery at UCSF, where Associate Professor Julie Schallhorn, MD, MS, performed the procedure using an innovative Light Adjustable Lens™ (LAL). These groundbreaking lenses, developed by UCSF’s very own Daniel Schwartz, MD, in collaboration with Nobel Laureate, the late Robert Grubbs, PhD, and Julia Kornfield, PhD, from Caltech, revolutionize the post-surgery experience for patients by fine-tuning the visual correction using only ultraviolet light.

The origins of the LAL date back 25 years when Dr. Schwartz first envisioned the concept. As a retinal specialist, he was inspired to create an intraocular lens made of a light-sensitive material that could be adjusted non-invasively using a laser after the eye had healed and the refractive errorwas stable. This idea sparked a fruitful collaboration with Dr. Grubbs, leading to the realization of this groundbreaking technology. The U.S. Food and Drug Administration (FDA) approved the LAL in 2017, offering patients who had undergone cataract surgery the possibility of optimized vision without relying on glasses.

Close-up of a woman with light hair in a dark jacket.
Kathleen Rydar, All May See’s President Emerita

The All May See Foundation played a crucial role in supporting the initial efforts of the collaboration at Caltech, fostering the development of this extraordinary technology.
 

President Emerita receives light adjustable lenses

One of the first recipients of the LAL at UCSF, Ms. Rydar attests to its effectiveness, expressing her delight at the outcome. After three adjustment sessions, she can now read effortlessly and enjoy the beauty of the world, even spotting wildflowers on mountaintops without the aid of glasses.

A woman in a white coat smiling beside ophthalmology equipment.
Associate Professor, Julie Schallhorn, MD, MS

Dr. Schallhorn, who performed the surgery, emphasizes the significant impact the LAL has had on her surgical practice. While existing techniques for selecting intraocular lens power are highly effective, some patients still require glasses. With the light adjustable lens, the risk of such errors is substantially decreased. Patients can now experience clear vision without their cataract and fine-tune their eyesight to their exact preferences, marking a momentous advancement in post-cataract surgical care.

Dr. Schallhorn is enthusiastic about the future of ophthalmology, particularly with the continuous development of new technologies. Reflecting on the field’s progress over the past 50 years, she marvels at how cataract surgery has transformed from a procedure with significant risk of potential vision loss to a routine
outpatient surgery.

Dr. Schallhorn and her colleagues at UCSF, alongside other visionaries in the field, are committed to exploring new ways to treat vision impairment and continue pushing the boundaries
of ophthalmic innovation.

Text about Light Adjustable Lens innovations.

The Light Adjustable LensTM represents a shining beacon of hope for cataract patients, illuminating a future where clearer vision and improved quality of life are within reach for countless individuals around the world.

 

An Eye for the Arts

Illustration of a woman with red hair and glasses, against a colorful background.
Digital illustration by Sean Choate, depicting Ellie’s experience.

Ellie Stokes faced a uniquely challenging time during the COVID-19 pandemic lockdowns, but found artistic creativity to be the perfect outlet.

In May 2020, Ellie was diagnosed by her doctor, neuro–ophthalmologist Nailyn Rasool, MD, with a rare form of double vision due to an artery compressing her sixth cranial nerve.

One treatment for her double vision was using prism glasses. These glasses are specialized, refracting light before it enters the eyes so that the light falls in the same spot on both retinas, creating a single image.

Since being prescribed prism glasses, Ellie has done very well. “I just love Dr. Rasool,” she said. “She’s been so wonderful and the whole staff at UCSF are incredibly supportive and welcoming.”

Ellie, a songwriter, has been working on an album that reflects on her experience and, as part of her inspiration, commissioned her friend Sean Choate to create the above illustration. “That’s what it felt like, two eyes under the glasses lens,” Ellie said.

Ellie is looking forward to releasing her album, possibly by the end of this year.

Pediatric Pals

Recently, while young Mackenzie Fredeen was waiting for treatment, she met another toddler, Akira Pierre, going through a very similar experience.

We first met Mackenzie last year, when her parents generously requested charitable gifts to That Man May See for vision research at University of California, San Francisco in lieu of first birthday presents for their daughter. Mackenzie was diagnosed with retinoblastoma (eye cancer) at just three-and-a-half-months old.

Two young girls smiling, playing on a slide.
Akira (left) and Mackenzie (right): pals and patients.

Fortunately, she found compassionate care at UCSF through specialist Armin Afshar, MD, MBA and his colleague, nurse Leanne Parsons, MS. Pediatric ophthalmology at UCSF strives to make small patients, courageously facing monumental challenges, feel like family while they are in treatment. “The combination of leading-edge expertise and humanitarian patient care for these child warriors is what makes Dr. Afshar’s team so successful. We are forever grateful,” according to Jordanna Howard, Mackenzie’s mother.

As only children can, Mackenzie and Akira made an instant connection. At the time, Akira was bravely undergoing treatment in ocular oncology – and the two girls immediately bonded, holding hands and playing together. Mackenzie and Akira have both since been deemed cancer-free. Their parents are grateful to Dr. Afshar for his unmatched care. Mackenzie and Akira found joy and hope in one another, and inspire all of us here at That Man May See.

A Dream Realized

Inside UCSF Ophthalmology’s New Home

 

Making It Official

After nearly a decade – from the initial plans to bring the Department of Ophthalmology and the Francis I. Proctor Foundation together on the Mission Bay Campus to the recent completion of the new core facility – the Wayne and Gladys Valley Center for Vision is making an impact.

The Center, which, along with research, teaching, surgical, and administration facilites, houses the world-class Koret and Proctor Foundation clinics, began to see patients in the new Mission Bay location in October 2020. Due to COVID-19, stringent safety guidelines were implemented and the official virtual Opening Celebration was delayed until February 18, 2021.

“Our new center provides the platform for continually advancing ophthalmology, further transforming the field, empowering UCSF leaders, researchers, clinicians, residents, fellows, and students to tackle enormous challenges ahead through innovation and collaboration that Mission Bay colleagues inspire,” said Kathleen Rydar, President Emerita of That Man May See.

UCSF Chancellor Sam Hawgood, MBBS, acknowledged the Wayne and Gladys Valley Foundation “for its generosity and foresight in the creation of this building, which will help to advance the groundbreaking work of all those who call it home. Your tireless commitment to improving vision treatments and care for all those in our communities is nothing short of inspiring.”

Dr. Hawgood went on to recognize Department Chair Stephen McLeod, MD, for “his remarkable leadership of the Department of Ophthalmology, as well as all of the faculty and staff, whose work every single day impacts the lives of our patients and their families. They embody our commitment, redefining possible with their passion and dedication to improving vision and eye health for all. […] I would like to thank the many leaders on our faculty, staff, and the UCSF Capital Projects team for their important role in the planning, design, and construction of this building and the dedicated team at That Man May See for their partnership and commitment to this project. Each of you has helped to make possible this transformational facility which holds tremendous promise for discovery and for healing countless patients in our care.”

Additional recognition goes to the contributions of UCSF Events Director Mary Hoffman; UCSF Events Manager Liz Purdy; Vice President of the UCSF Foundation and UCSF Vice Chancellor of University Development and Alumni Relations Jennifer Arnett; and the Board of Directors of That Man May See.

 

Wayne and Gladys Valley Center for Vision
The Wayne and Gladys Valley Center for Vision; an exam room; the Joan and David Traitel Lounge; the Tom and Yvonne Mazzocco Surgical Laboratory.

Under One Roof

For many years, UCSF eye care programs were in multiple locations throughout San Francisco. Now research scientists and physicians across a wide spectrum of vision- and eye-related disciplines have been brought together at UCSF’s Mission Bay campus with many more to follow. This will facilitate coordinated patient care and extend the boundaries of scientific discovery.

“The Wayne and Gladys Valley Center for Vision supports instrumental collaboration between some of the most brilliant minds combating visual disease today and delivers on our commitment to transforming lives,” said Dr. McLeod.

The new home for UCSF Ophthalmology owes its creation to the commitment and generosity of patients, physicians, and donors, and will bring hope to those impacted by vision complications around the world.

“The transcendent beauty of true philanthropy,” said University of California President Michael Drake, MD, “is that your contributions will be a gift to people far and wide for generations to come – people you will never know, but whose lives will be better because of you.”

“The cutting-edge research that will be accomplished here and the care our experts provide will impact the quality of life for countless individuals of all ages for years to come…” – Deborah Chesky, That Man May See President

The Patient Experience

Access to renowned ophthalmologists, surgeons, optometrists, and scientists has been expanded to facilitate more of the community through 80 patient care rooms and over 45,000 square feet of clinic space. The Wayne and Gladys Valley Center for Vision has been designed with visually impaired visitors’ needs in mind, providing a welcoming and inclusive experience for all who come through its doors. Function, equity, and comfort were all carefully incorporated by the architects.

Set to welcome more than 160,000 patient visits a year, the Wayne and Gladys Valley Center will offer eye care ranging from routine to complex and multidisciplinary specialty care services. This includes advanced cataract and corneal surgery, complex glaucoma, ocular inflammatory disease, orbital disease and eye tumors, challenging retinal disorders, and neuro-ophthalmological conditions facilitated by the latest therapeutic and diagnostic equipment.

“The cutting-edge research that will be accomplished here and the care our experts provide will impact the quality of life for countless individuals of all ages for years to come,” said Mrs. Chesky. “Our faculty members and alumni are truly poised to save sight and to save lives.”

On February 18, 2021, so many helped us celebrate the opening of The Center. Thank you.

This special virtual event featured remarks by University of California President Michael Drake, MD; UCSF Chancellor and Arthur and Toni Rembe Rock Distinguished Professor Sam Hawgood, MBBS; Dean of the School of Medicine and Vice Chancellor of Medical Affairs Talmadge E. King, Jr., MD; Chair of UCSF Ophthalmology Department and Theresa M. and Wayne M. Caygill, MD, Distinguished Professor and Chair Stephen D. McLeod, MD; That Man May See President Deborah Chesky, President Emerita Kathleen Rydar, and Chair of the Board John de Benedetti. It also included a tour of the Valley Center, led by Dr. McLeod.

Special guests at the live event which followed the virtual opening celebration, included Dr. Michael Drake, Chancellor Sam Hawgood, Dr. Talmadge King, Michael Desler, Dr. Stephen McLeod, Ruth Hoffman, Ron Conway, Dr. David and Victoria Chang, Don and Judy McCubbin, John de Benedetti and Nina Srejovic, Tom and Johanna Baruch, Lily Huang, John Stock, John Rohal, Pat and Phil Jelley; Drs. Tom and Chihori Lietman; Kathleen Rydar; and Deborah Chesky.

View the Opening Celebration online: https://www.thatmanmaysee.org/valley-opening

Schedule your next appointment at the Wayne and Gladys Valley Center for Vision today. Call 415.353.2800 Monday-Friday, 8 a.m. – 5 p.m.

Log-On: The Doctor Will See You Now

 

Telemedicine: The use of technology to connect patients and healthcare providers who cannot interact in person.

The concept of today’s telemedicine goes back to the 1950s. Originally used to link rural patients with medical staff in more centralized locations, the COVID-19 pandemic of 2020 has brought the clinic into everyone’s home. But even before sheltering-in-place, UCSF doctors have been using and refining telemedicine from the Tenderloin to Thailand. (Photo caption: Using a special attachment, a field technician turns his smartphone into an optical camera.)

 

San Francisco: Diabetes and Glaucoma Mobile Screenings 

The prevalence of diabetes is growing, both in the United States and worldwide. As a result, the frequency of diabetic retinopathy (DR) and vision threatening diabetic retinopathy (VTDR) is also expected to increase dramatically. Individuals with Type 1 diabetes should have annual screenings for DR beginning five years after the onset of their disease. Those with Type 2 diabetes need a prompt examination at the time of diagnosis and at least yearly examinations thereafter. However, only about 60% of those with either form of diabetes currently have yearly screenings.

Map of San Francisco with service site and camera locations marked.

 

White mobile eye service vehicle parked outdoors.
The Eye Van: UCSF’s ophthalmology mobile diagnostic clinic

Enter the Eye Van
Gifts from the Friends of the Congressional Glaucoma Caucus Foundation, the San Francisco Health Plan, and That Man May See allowed purchase of a van in 2004 that is used by a collaboration of UCSF, San Francisco General Hospital (now Zuckerberg San Francisco General Hospital or ZSFGH), and the San Francisco Community Health Network (CHN). This van provides mobile eye care as well as glaucoma and retinal screenings for San Francisco’s underserved population.

With funding from the city and county of San Francisco, grants from the state of California, UCSF, and ZSFGH, and the teamwork of UCSF Retina faculty Armin Afshar, MD, MBA, Director of Tele-Ophthalmology for the San Francisco Department of Public Health, and Jay Stewart, MD, Chief of Ophthalmology at ZSFGH, the 28-foot Eye Van was refurbished in 2017. This allowed a state-of-the-art ultra-widefield fundus camera to be mounted inside. This camera captures images of the back portion of the eye: the retina, macula, fovea, optic disc, and posterior pole.

 

How It Works
With a technician, the Eye Van is sent on a rotational schedule to primary care clinics in areas of need throughout San Francisco. Additional retinal cameras in four community health center primary clinic locations in the city allow patients to receive diabetic retinal screenings at the same time and location as their physician visits.

Dubbed the “ZSFGH Eye Clinic on Wheels,” the van connects to Wi-Fi at each primary care health center as it arrives. The patient’s electronic health record is accessible from an on-board computer and demographic/clinical information is collected at the time of the screening.

Retinal images are taken without the need for dilating eye drops, then uploaded wirelessly to the server. These photographs are transmitted to a reading center at ZSFGH where they are graded by trained readers for diabetic retinopathy (DR) and other sight-threatening diseases, such as glaucoma and cataracts. If potential eye issues are identified, the patient is referred to the ZSFGH ophthalmology clinic.

 

Analyzing the Impact
In an article published in Ophthalmology Retina in 2019, the Proctor Foundation’s Catherine Oldenburg, ScD, MPH, joined Drs. Afshar and Stewart in reporting on initial results of the ZSFGH tele-retinal screening program. A total of 2,788 patients were screened in the diverse urban population of San Francisco, which included the underserved, the disabled, the homeless, and the prison population.

 

Beyond the Eye Van
A $51,000 UCSF President’s Innovation Fund Award to optimize screening for pediatric diabetic retinopathy with a telemedicine screening program was given to Pediatric Endocrinology Fellow Fatema Abdulhussein, MD, in collaboration with UCSF Pediatric Ophthalmology Director Alejandra de Alba Campomanes, MD, MPH, resident Murtaza Saifee, MD, and Dr. Afshar.

The award covers the purchase of an ultra-widefield retinal camera for the UCSF Madison Pediatric Diabetes Clinic at Mission Bay, so that children with the disease can conveniently have retinal photographs taken during their endocrinology visits. These images are then transmitted to UCSF ophthalmology faculty for screening for diabetic eye disease.

 

Thailand: Diagnosis Beyond the Clinic

Mobile device displaying a close-up of a human eye.
Optical camera device, developed by a team including UCSF’s Tyson Kim, MD, PhD, and Jeremy Keenan, MD, MPH, attaches to a smartphone for easy, in-field data gathering.

In the city of Chiang Mai, Thailand, Francis I. Proctor Foundation’s Jeremy Keenan, MD, MPH, researched the use of telemedicine for diagnosing cytomegalovirus (CMV) retinitis, a potentially blinding complication from acquired immunodeficiency syndrome (AIDS). Because people are unlikely to see an ophthalmologist before vision loss has already begun to occur, CMV retinitis is often not caught at an early phase.

Telemedicine is now providing far more opportunities to save vision. Portable retinal cameras capture an image of a patient’s eyes and are sent electronically to remote retinal specialists to determine whether there is development of CMV retinitis. In Thailand, ophthalmologists and health care providers are a scarce resource, so being able to prioritize their time by having non-medical photographers assist with the detection process makes a huge impact. Additionally, this expands the number of individuals who can be screened since the photographer can easily travel to take the photos.

 

Ever Improving
Dr. Keenan is working with Daniel Fletcher, PhD, of UC Berkeley, and Todd Margolis, MD, PhD, of Washington University, to develop an attachment to convert a smartphone into a retinal camera and anterior segment camera, offering a cost-effective approach to screening in resource-limited settings. Masters students in the Berkeley bioengineering program have been vital to this project. Supporting more students to work with the team is the next step in the process of creating an improved telemedicine option.

 

A Broader Impact
The COVID-19 pandemic has highlighted the need for telemedicine like never before, and it is especially important in areas like Thailand, where medical resources can be sparse. As Dr. Keenan’s team is currently engaged in more hospital-based work, the goal is to include more community-based service. The addition of another retinal camera will allow for more diagnoses to be made while the handheld retinal camera is still in development.

With initial seed funding from That Man May See, the impact of research like Dr. Keenan’s has given a second chance at sight for those who might not have otherwise been diagnosed in time.

 

Looking Forward
Telemedicine makes it easier for patients to receive high-quality ophthalmic care regardless of their location. It also enables health care providers to offer services to broader, more diverse patient populations. The future will bring patient and provider closer together, no matter how far apart geographically.

Serving San Francisco’s Homeless

 

Help is Needed to Shift to Telehealth

People without secure housing represent one of society’s most vulnerable populations. While the overall ocular health status and needs of the homeless are not fully understood, poor visual acuity has been correlated with reduced well-being and could pose cascading health implications. (Photo caption: Pre-COVID-19, Neeti Parikh, MD, (right) coordinates patient information with volunteer Sarah Menchaca.)

Numbers of patients and referrals listed.

Thanks to The California Endowment and That Man May See, UCSF Ophthalmology opened a monthly shelter clinic in 2017. With a volunteer staff of medical students and residents overseen by UCSF ophthalmology faculty, the program serves patients at San Francisco’s Multi-Service Center South and Division Circle Navigation Center homeless shelters.

Services range from ophthalmologic screening exams and follow-up care to free eyeglasses (through Project Homeless Connect).

“Unfortunately, the pandemic had a tremendous impact on clinic operations” said Alejandra de Alba Campomanes, MD, MPH, UCSF faculty lead for the clinic. “While our team has not been able to care for patients in-person since March, we are working with the San Francisco Department of Public Health nurses at the homeless shelters to begin telemedicine visits and streamline a referral process for shelter residents.”

To be able to provide needed telehealth services, the clinic is seeking a specialized camera designed to obtain detailed images of the eyes of patients with possible diabetic retinopathy, while also screening for other sight-threatening conditions. Funds are also needed for UCSF staff to develop a monitoring and training program. This program would provide basic training in eye examination for the public health nurses that have in-person access to this high-risk population. These efforts will help identify patients who warrant referral for advanced ophthalmologic care.

 

Help UCSF Ophthalmology shift to telehealth services to resume serving these patients: www.thatmanmaysee.org/donate