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Institute News

Rare Disease Day gathers scientists, doctors and families

AuthorMiles Martin
Date

March 3, 2022

The 2022 Rare Disease Day Symposium took place last weekend at the Dana On Mission Bay Resort in San Diego. The event, sponsored by Sanford Burnham Prebys and CDG CARE, brought together researchers, clinicians and families from around the world to discuss new medical breakthroughs and meet other families living with rare diseases.

The 2022 Rare Disease Day Symposium took place last weekend at the Dana On Mission Bay Resort in San Diego. The event, sponsored by Sanford Burnham Prebys and CDG CARE, brought together researchers, clinicians and families from around the world to discuss new medical breakthroughs and meet other families living with rare diseases.

Rare Disease Day is celebrated on the last day of February to raise awareness for rare diseases, defined by the United States government as those that affect fewer than 20,000 people. Although there are more than 7,000 individual types of rare diseases that affect more than 30 million people in the United States, this year’s conference gathered more than 200 people focused on CDG, an extremely rare group of genetic disorders that affect children. 

CDG, which stands for congenital disorders of glycosylation, occurs when sugar molecules on many of our proteins are absent or incomplete. CDG causes serious, often fatal, malfunctions in various organ systems throughout the body.

“This is a chance for the global CDG community to come together, support one another and continue to try to find treatments,” says Hudson Freeze, PhD, director of the Human Genetics Program at Sanford Burnham Prebys. “It’s always my favorite weekend of the year, and I’m thrilled that we’re able to do it again safely.” Freeze’s primary research focus is CDG, and he has personally worked with more than 300 patients. 

Exchanging knowledge
The three-day symposium opened Friday morning with introductory comments from three important figures and philanthropists in Sanford Burnham Prebys’ history: T. Denny Sanford, Malin Burnham and Debra Turner. Congressman Scott Peterson also spoke on the importance of funding medical discoveries. 

“Our job is to make a positive difference. We do that best when we all work together,” said Sanford in his video introduction. “Congratulations on all your work. You make me very proud.”

This year, 19 scientists and clinicians in total spoke on the latest research in modeling, treating and understanding CDG. The full program of presentations can be found here.

Connecting families
Although Rare Disease Day is an important opportunity to share the latest scientific research, one of the highlights of the event doesn’t involve science at all. To provide space for families to take a break from the presentations and socialize, staff and volunteers transformed the Bayside Conference Room of the Dana resort into a child care and respite area packed full of toys and games.

In addition to giving families space to play, Rare Disease Day hosted several group activities for families, including a magic show on Saturday and a surprise visit on Sunday morning from Disney’s Anna and Olaf.

​Longtime friend of the institute Damian Omler, a thirteen-year-old who is the only person living with his rare genetic mutation, had a great time dancing along to “Let it Go” and playing catch with his father, Donnie.

And while the joy in the respite conference room was palpable, there was something else, less tangible, in the air as well: hope.

“Meetings like this bring us hope and help us raise awareness for CDG,” says Donnie. “That gives us a sense of purpose each and every time we attend the conference. And we won’t stop, even 20 years from now.” 

Omler family

Damian Omler and his family, parents Donnie and Gracie and brother DJ, had a great time at Rare Disease Day the year (image credit: CDG CARE)

Institute News

Mark your calendars: Padres Pedal the Cause is back

AuthorMiles Martin
Date

January 20, 2022

Sanford Burnham Prebys is gearing up for next year’s Padres Pedal the Cause (PPTC), an annual fundraising race that invites participants to cycle, spin, run or walk to support cancer research in the San Diego area. The event, scheduled for April 9, 2022, at Petco Park, is currently planned to be held in person for the first time since the beginning of the pandemic.

Leveraging the power of San Diego
PPTC was founded in 2013 by two-time lymphoma survivor Bill Koman and his wife, Amy. Thankful for the lifesaving care that Bill received, the Koman family was determined to pay it forward to ensure that others had the same outcome. With this goal in mind, the couple created PPTC, a cancer fundraising cycling challenge operating in partnership with the San Diego Padres.

Since the inaugural ride of PPTC, the organization has raised more than $15 million and funded 73 collaborative research projects in San Diego, including six clinical trials. They’ve also expanded and grown, merging with the Immunotherapy Foundation under a new name: Curebound.

Together, these two organizations share the belief that discovering a cure for cancer can be made possible by harnessing the unique power of San Diego—home to three nationally recognized National Institutes of Health cancer institutions and a renowned pediatric hospital. Last year, Curebound welcomed two new research partners: La Jolla Institute for Immunology and Scripps Research. They join Sanford Burnham Prebys, Moores Cancer Center at UC San Diego, the Salk Institute, and Rady Children’s Hospital in collaborating to accelerate cancer research into cures.

A pivotal year for Padres Pedal the Cause
This is an important year for PPTC. After a record-breaking event in 2019—which had almost 3,000 participants and raised more than $3 million—COVID-19 presented challenges. The next PPTC event wasn’t held until spring 2021, moving to a virtual format due to the pandemic.

That event had 1,578 participants and raised $1.5 million. And while these numbers demonstrate the commitment of the Pedal the Cause community to continue their good work despite the pandemic, the amount is less than that received for the 2019 event, demonstrating the obstacles the community faced to raise those funds.

Now, PPTC is ready to ride at full speed for the first time in more than two years.

Join Team Sanford Burnham Prebys
Padres Pedal the Cause ’22 will take place on April 9, 2022, at Petco Park, and registration is now open for the Sanford Burnham Prebys team. Whether you’re ready to ride, run, walk, spin, participate virtually or even just cheer from the sidelines, 100% of every dollar raised funds lifesaving cancer research.

Ride with Sanford Burnham Prebys this April, and help us create a world without cancer.

Join Team Sanford Burnham Prebys

Institute News

Early-career scientists showcase their work at the 20th Annual Trainee Research Symposium

AuthorMiles Martin
Date

October 5, 2021

The scientific leaders of tomorrow gathered to showcase their work at the 20th Annual Trainee Research Symposium on September 23rd. The talented group of presenters included postdoctoral researchers, graduate students, and staff scientists from labs across Sanford Burnham Prebys. 

After introductory remarks by Sanford Burnham Prebys Student Network co-chairs Stephen Sakuma and Marie Berenguer, PhD, as well as president Kristiina Vuori, MD, PhD, the young scientists gave 20-minute podium presentations about their research, which were judged by a panel of Sanford Burnham Prebys faculty and staff. Speakers included:

•    Nirmalya Dasgupta, PhD (Postdoctoral Fellow, Adams lab)
•    Ceda Stamenkovic (Graduate Student, Sacco Lab)
•    Cynthia Lebeaupin, PhD (Postdoctoral Associate, Kaufman lab)
•    James Kezos, PhD (Postdoctoral Fellow, Ocorr Lab)
•    Zhijie Xia, PhD (Postdoctoral Fellow, Freeze lab)
•    Valeria Guglielmi, PhD (Postdoctoral Associate, D’Angelo lab)
•    Victoria Recouvreux, PhD (Staff Scientist, Commisso lab)
•    Jonatan Matalonga Borrel, PhD (Postdoctoral Associate, Dong lab)
•    Chiara Nicoletti, PhD (Postdoctoral Associate, Puri lab)

Cynthia Lebeaupin, PhD and Valeria Guglielmi, PhD were respectively awarded first and second place by the judges for their presentations, for which they’ll each receive a cash prize to go towards career development activities. Lebeaupin’s research focuses on the progression of fatty liver disease to liver cancer, and Guglielmi studies the role of nuclear pores the development of bone marrow cells. 

After the first two sessions of presentations, the keynote speech for the Symposium was given by Katherine Thompson-Peer, PhD, an assistant professor of developmental & cell biology at the University of California at Irvine.

Following the last podium presentation was a poster session where 30 early-career scientists were given the chance to present their work. A panel of judges selected the top three posters—presented by Shaun Lim from the Kumsta and Hansen labs, Aleksandr Arzamasov from the Osterman lab, and Michaela Lynott from the Colas lab—and they will also receive a cash prize. The day was capped off with closing remarks from Sanford Burnham Prebys CEO C. Randal Mills, Ph.D.

Congratulations to all the participants in this year’s Symposium, and a special thank you to the staff at the Office of Education, Training, & International Services (OETIS) for organizing the event. 
 

Institute News

2021 Fishman Fund Award ceremony celebrates postdoctoral scholars

AuthorSusan Gammon
Date

September 28, 2021

The Fishman Fund Awards were presented on September 23, 2021, in a virtual ceremony that honored the enduring legacy of our Institute’s founders, Dr. William and Lillian Fishman.

The three exceptional winners were welcomed by Fishman Fund co-founder Reena Horowitz; co-founder designee Jeanne Jones; and 2018 award recipient Laura Martin-Sancho, who commented, “A Fishman Fund Award is more than the money—it means that someone believes in you and believes in your goals.”

Longtime supporter, Institute trustee and namesake Malin Burnham reflected on his first meeting with the Fishmans more than 40 years ago when they were setting the stage for Sanford Burnham Prebys. “The Fishmans were creating a collaborative, inspirational atmosphere for postdocs—the lifeblood of scientific enterprise. This award pays tribute to their vision that young, talented scientists hold the key to curing disease.”

Sanford Burnham Prebys CEO Randy C. Mills thanked our supporters and shared, “Fishman Fund Award winners are on a journey not only to make their mark through scientific discovery, but also to define themselves as scientific leaders. I’m excited to see the vision of better science that they will translate into reality for the benefit of patients in need.”

Reena Horowitz and the late Mary Bradley established the Fishman Fund Awards in 2001 to honor the Fishmans and advance the careers of promising young scientists. Ever since the fund was launched 20 years ago, more than 70 awards have been conferred—now worth $10,000—to support career-development activities. 

This year’s awards were presented to:

Cynthia Lebeaupin, PhD
The Lenka Finca and Erna Viterbi Fishman Fund Prize

“I’m especially grateful to be affiliated with a community that supports its postdoctoral researchers, helping us transition into the great leaders of tomorrow.”

Dr. Lebeaupin is studying how fatty liver disease progresses to liver cancer. Fatty liver disease is rapidly increasing in the U.S. and around the world—and there is no cure. Studying how cells respond to stress conditions may open new avenues to target those responses and prevent cancer. Dr. Lebeaupin, a postdoctoral associate in the lab of Randal J. Kaufman, PhD, aims to become a professor of biology in academia.

Valeria Guglielmi, PhD 
The Reena Horowitz and Mary Bradley Fishman Fund Founders Award

“Now more than ever, we need people like you who trust scientists and believe science can really make a difference in our lives.”

Dr. Guglielmi is researching nuclear pore complexes and their role in the development and activity of immune cells. This research may lead to novel treatments for health conditions caused by dysregulated immune-cell production and function. Guglielmi is a postdoctoral associate in the lab of Maximiliano D’Angelo, PhD, and her goal is to become an independent investigator to further research on the immune system.

Paulina Sosicka, PhD 
The Jeanne Jones and Kathryn Fishback Fishman Fund Prize 

“I’m very grateful and honored to receive this Fishman Fund Career Development Award. Thank you to the founders and donors who made this possible.” 

Dr. Sosicka is investigating the application of dietary supplementation to treat debilitating genetic conditions called CDGs, which are rare diseases—mainly affecting children—caused by defects in the human enzymes and proteins responsible for adding sugar molecules onto proteins and lipids. The research may also provide insights into new approaches to treat obesity and cancer. A postdoctoral associate in the lab of Hudson Freeze, PhD, Dr. Sosicka aspires to become a professor in academia in the field of glycobiology.

 

Event recording

 

Institute News

Fighting rare diseases: Finding treatments and bringing hope to families

AuthorMonica May
Date

March 23, 2021

The majority of rare diseases affect children, most of whom have an underlying genetic cause for their condition that is incurable.

The majority of rare diseases affect children, most of whom have an underlying genetic cause for their condition that is incurable.

Often, their own doctors have never heard of their disease, let alone know how to treat it.

But there is someplace they can turn to for help. The Human Genetics Program at Sanford Burnham Prebys provides insights into the genes and environmental factors that play a role in the development of childhood diseases. Their work often leads to better ways to diagnose, treat, and sometimes, even cure children.

On March 18, 2021, two patients whose lives were saved by discoveries made by Hudson Freeze, PhD, and José Luis Millán, PhD, joined the scientists for a conversation about what this work means to them and how their lives have been impacted. Watch the full discussion below.

Institute News

19th annual Trainee Research Symposium is a virtual success!

AuthorSusan Gammon
Date

October 5, 2020

Sanford Burnham Prebys’ annual Trainee Research Symposium is dedicated to highlighting the research of postdoctoral scientists and advanced graduate students.

This year, nearly 40 early-career scientists presented their research during an engaging two-day, jam-packed Zoom call that went off without a hitch.

After opening remarks by Malene Hansen, PhD, professor and faculty adviser for Postdoctoral Training, the podium and poster presentations began. Faculty, trainees, staff scientists and other interested parties navigated through sessions that ranged from new approaches to conquer brain cancer to the molecular basis of aging. The event gives “up-and-coming” scientists an opportunity to receive feedback on their work, explore potential new collaborations and receive prize money to support career development activities.

“We’re fortunate to be starting our careers at Sanford Burnham Prebys where the scientific research is significant and diverse,” says Cynthia Lebeaupin, PhD, a best poster presentation award winner. “I’m grateful to be able to present my project, which is focused on the link between fatty liver disease and cancer, to colleagues from different disciplines, such as cardiac disease and immunology. Their questions about my research bring fresh perspectives and spark new ideas.”

Keynote speaker Martin Chalfie, PhD, a Nobel Laureate in Chemistry and professor at Columbia University, opened day two of the event with a presentation titled, “GFP: Lighting Up Life,” detailing the journey that led to his discovery of GFP—a fluorescent protein that revolutionized how scientists look at the inner workings of living cells. Chalfie followed with an informal “Ask Me Anything” session where he shared his passion for mentoring early-career scientists.

C. Randal (Randy) Mills, PhD, CEO of Sanford Burnham Prebys, closed the event with a happy hour exclusively attended by trainee presenters—an opportunity for everyone to get to know more about his experiences as a PhD student and how his career evolved to his current position as leader of our world-class biomedical research Institute.

Many congratulations to all who participated in the symposium, and thanks to the organizers at the SBP Science Network and the Office of Education, Training, & International Services (OETIS).

This year’s symposium winners are:

Best Podium Talk – Judges Selection

Natalie Kirkland, PhD
Engler/Bodmer Labs
Runner-up
Stephen Sakuma
D’Angelo Lab

Honorable Mentions

Mallika Iyer
Godzik Lab
Jaime Zlamal, PhD
Osterman Lab

Best Poster –Judges Selection

Cynthia Lebeaupin, PhD
Kaufman Lab
Rashmi Mishra, PhD
Dong Lab
Ee Phie Tan, PhD
Hansen Lab

Best Podium Talk – Popular Vote

Stephen Sakuma
D’Angelo Lab

Honorable Mention

Jaime Zlamal, PhD
Osterman Lab

Institute News

Families, physicians and scientists unite at Sanford Burnham Prebys’ 11th Annual Rare Disease Day Symposium

AuthorMonica May
Date

March 16, 2020

This year’s event centered on CDG, a rare genetic condition that affects around 1,500 people worldwide.

With more than 270 attendees and 30 world-renowned scientists and clinicians, Sanford Burnham Prebys’ 11th Annual Rare Disease Day Symposium was officially the largest in the event’s history. This year’s discussion centered on congenital disorders of glycosylation, or CDG, a rare genetic condition that affects around 1,500 people worldwide.

Malin Burnham, T. Denny Sanford and Debra Turner, honorary trustees of Sanford Burnham Prebys, opened the three-day meeting with moving remarks. A theme emerged: Medical advances are accelerated when key stakeholders work together—including scientists, physicians, people with CDG and their families, patient advocacy groups, granting agencies, industry and philanthropists.

“Our annual symposium aims to create an ecosystem in which key stakeholders can collaborate and communicate,” said Hudson Freeze, PhD, director of the Human Genetics Program at Sanford Burnham Prebys and symposium chair. “Together, we celebrate our successes, focus on challenges and discuss the future of CDG research.”

Presenters at the meeting described the power of the ecosystem. Since the first conference a decade ago where scientists reported on the basic biology of CDGs, today we have promising clinical trials for the most common CDG mutation. In addition, a historic nationwide effort to establish the natural history of CDGs launched this year—which addresses decades of unresolved questions and helps remove barriers to starting clinical trials.

First discovered in the 1990s, scientists now know that CDG is caused by mutations that disrupt the body’s normal process of attaching sugars to proteins. Children with CDG have varying degrees of speech and language difficulty, poor balance, motor control, vision problems, hearing impairments and seizures. 

Because CDG is rare, many patients bounce between doctors and clinics for years before they receive an accurate diagnosis. At the symposium, an innovative session called the “Doctor-is-in” session connects families with medical researchers and clinicians in small groups. For some medical researchers, the session is the first time they have met a person with CDG.

The conference was co-organized by Sanford Burnham Prebys and CDG CARE, a nonprofit organization founded by parents seeking information and support for CDG.

Institute News

Starving the “world’s toughest cancer”

AuthorMonica May
Date

November 18, 2019

Russell Gold is lucky to be alive. Only 9% of people with pancreatic cancer survive longer than five years—making it one of the deadliest cancers. This January, he will be a six-year survivor. 

To help the public better understand what makes pancreatic cancer so lethal—and how we can develop medicines so there are “more of me,” as Gold said—our Institute teamed up with the Fleet Science Center to host a panel discussion on Sunday, November 17. Gold was joined by a clinician and a scientist who both work on pancreatic cancer: Darren Sigal, MD, of Scripps Health; and Cosimo Commisso, Ph.D., an assistant professor at Sanford Burnham Prebys’ National Cancer Institute (NCI)-designated Cancer Center, respectively. 

As the speakers explained, pancreatic cancer is often difficult to diagnose because symptoms—such as pain in the abdomen, yellow skin and eyes, and weight loss—do not typically occur until the disease is advanced. As a result, pancreatic cancer is the 11th most common cancer but the second-leading cause of cancer death. More than 56,000 Americans are expected to receive a pancreatic cancer diagnosis in 2019, according to the American Cancer Society. 

Commisso, who was recently named a NextGen Star by the American Association for Cancer Research, is hopeful that his research will lead to effective treatments for pancreatic cancer. Commisso’s research focuses on how rapidly growing pancreatic tumors scavenge nutrients using an alternative supply route, called macropinocytosis. His lab has found that blocking this process, often described as “cellular drinking,” causes pancreatic tumors to shrink—indicating that the approach could lead to tumor-starving drugs. 

This event was the fourth of our five-part “Cornering Cancer” series. Register today to join us for a discussion on pediatric brain cancer in December.

Institute News

Top neuroscientists gather at Sanford Burnham Prebys’ annual symposium

AuthorMonica May
Date

November 18, 2019

A mother who no longer remembers her son. A daughter who took doctor-prescribed pain medication and slipped into addiction. A father who has trouble grasping a pen and eventually becomes unable to walk. Neurological disorders are some of the most painful and complex conditions our society faces today. Yet much about the brain remains unknown, hindering our ability to help people with these disorders.

To help shed light on the brain’s mysteries, on November 1, 2019, more than 250 neuroscientists gathered at Sanford Burnham Prebys’ one-day symposium to share their latest discoveries. Organized by professors Jerold Chun, MD, PhD; Randal Kaufman, PhD; Barbara Ranscht, PhD; and Huaxi Xu, PhD, the event attracted scientists from around the world eager to learn more about biological clues that are leading to effective therapies. Read the full list of the invited speakers and their talks.

“Nearly every day we read about the toll neurological diseases such as Alzheimer’s, dementia, mental health disorders and more take on our society,” said Kristiina Vuori, MD, PhD, president of Sanford Burnham Prebys, in her introductory address. “Our symposium brings together scientists at the frontiers of brain research who share their latest discoveries to open new paths toward new and better treatments.”

More than 50 million Americans are affected by neurological disorders, including Alzheimer’s disease, dementia, addiction and more, according to the National Institute of Neurological Disorders and Stroke. Most of these conditions are not well addressed by current medicines.

At the symposium, world-renowned scientists from Stanford University, Mount Sinai, University of Vienna and other top-tier institutes gave talks describing their strategies to uncover the molecular basis of brain disorders and how these discoveries are advancing potential therapies. A national plan to address Alzheimer’s and other dementia types was described by Eliezer Masliah, MD, the National Institute of Aging’s director of the Division of Neuroscience.

“This was my first scientific conference, and it was perfect for learning about a wide range of cutting-edge brain research,” said attendee Jaclyn Beck, a PhD student at UC Irvine who studies the role of the brain’s immune cells, called microglia, in Alzheimer’s disease. “I have several pages of notes from the talks detailing findings I want to investigate and people I want to contact.”

For the past 40 years, our Institute has invited leading experts on one scientific topic to share their latest research at an annual symposium. By encouraging connection and collaboration, we hope to inspire insights that improve human health. The 41st annual symposium will take place in November 2020 and focus on the biology of organelles, specialized pouches within cells that carry out critical functions such as generating power and breaking down waste, and its role in health and disease.

Institute News

Advancing life-changing science at Sanford Burnham Prebys’ 2019 gala

AuthorMonica May
Date

November 13, 2019

On November 2, 2019, more than 170 supporters of Sanford Burnham Prebys stepped into a winter wonderland at our Institute’s “Nordic Nights”-themed gala.

As attendees enjoyed the festivities—including an ethereal violinist on stilts and dancing ballerinas—the evening’s goal was never far from everyone’s mind: advancing biomedical research that will transform the future of human health. Thanks to guests’ generous donations our scientists can accelerate their efforts to understand and treat serious diseases such as Alzheimer’s, heart disease, cancer and more.

Watch Helen share her breast cancer story
(video shown at the gala)