PANCREAS SPOTLIGHT
By Shweta Lavania

This article originally appeared in Pancreas, Volume 53, Number 6, July 2024. It can be downloaded at www.pancreasjournal.com

Selfless service in cancer research is the embodiment of compassion in action. It is through service that we truly connect with the world around us, leaving a legacy of love, generosity, and empathy. No one has understood this fact better than Agi Hirshberg. From finding inspiration through her tragic loss, Agi’s unwavering commitment to the cause of supporting and advocating for Pancreatic Cancer patients is simply a tale of compassion, inspiration, and true labor of love. We, here at Pancreas are honored to celebrate the life and philanthropy of the remarkable Agi Hirshberg by featuring her in our inaugural Pancreas Spotlight series.

I spoke with Ms. Hirshberg on a sunny Fall afternoon to try and decode the secret sauce that flows through the veins of this impossibly sunny, vivacious, 78-year- (young!) old and came back inspired by her humility, her boundless optimism (“the cure is just so close now, I can feel it”) and her love and support for the tiny but growing community of pancreatic cancer research that punches well above its weight in the fight for patients’ lives!

Agi’s inspiring life story which begins in 1946 has all the hallmarks of the upheaval of the Post World War era that forced her parents, Edmund, a Holocaust survivor, and Sarah Mandel, to leave Hungary and emigrate to the United States of America. Like all immigrants, America eventually embraced and assimilated this hardworking family with all its fervor and thus began little Agi’s journey to a life of hard work and boundless optimism towards a better destiny. From Miami to eventually Los Angeles, armed with limited English, Agi set out to complete her education eventually receiving her bachelor’s degree at Woodbury University in Business and Design. A career in creative designs and marketing beckoned which eventually led to a chance encounter with a “handsome gentle giant”, who went on to change the course of her life, both personally and professionally. In 1986 Agi met, fell in love and eventually married the love of her life, Ronald Hirshberg, a “retail genius”. Together, they established a successful business by becoming the exclusive licensee for Adidas accessories, all over the world. Life was perfect until fate intervened. In 1997, Ron was diagnosed with Pancreatic Cancer which eventually led to his demise at the age of 54 after a hard-fought battle of 8 months and seven days. Those who are familiar with the ravages of this disease know the stealth nature by which it manifests in the form of innocuous symptoms which are often ignored until it is well too late to stage a successful therapeutic intervention. While losing one’s beloved husband in the prime of his life might have broken the spirits of a lesser mortal. Agi Hirshberg found new strength and a clarity of purpose that led to the establishment of the Hirshberg Foundation for Pancreatic Cancer Research a mere 6 weeks after Ronalds’s death.

One can say now, with hindsight, that the mission almost chose Agi way before she chose it herself. Her phenomenal instincts as an entrepreneur coupled with her unapparelled belief in the urgency of her mission led her to recruit and collaborate with some of the brightest minds in the field of Pancreatic cancer research to raise awareness, brainstorm new treatment guidelines and above all, place the needs of patients first and foremost, in any clinical and research scenario. Merely 6 months after Ron’s untimely loss, the Hirshberg Foundation was up and running at UCLA under the leadership of Dr. Howard Reber. Since its inception, the Hirshberg Foundation has touched the lives of countless patients by raising more than $32 million in funding that is used for providing financial aid to patients, establishing the Seed grant program that provides critical funding to support medical research in pancreatic cancer, establish research institutions that focus on pancreatic cancer pathobiology and treatment, establishing tissue data banks to support research, provide support for inter-disciplinary cancer research to spur new innovations and support professional research organizations such as the American Pancreatic Association (APA), Japan Pancreas Society, and the European Pancreatic Club’s Annual Meetings to name a few. One might assume that Agi’s legacy as a champion of Pancreatic Research is all but assured and she may well afford to relax as the years go by. One couldn’t be more wrong because the messianic zeal which fuels Agi is far from diminished, and she continues to cris- cross across the world marshaling her phenomenal resources to bring together new collaborators, supporting new researchers, and throwing fundraisers and spending time with pancreatic cancer patients and supporting them through the tough journey that defines their destiny from diagnosis to treatment and management of symptoms. She is ably supported in this mission by her daughter, Ms. Lisa Manheim, Director of the Hirshberg Foundation for Pancreatic Cancer Research, who shares her mother’s boundless optimism and passion for pancreatic cancer patient advocacy and research. Ms. Manheim has taken over the rigors of the day- to-day operations of the foundation while Ms. Hirshberg continues to draw up ambitious plans and alliance to thwart the march of pancreatic cancer.

Agi Hirshberg is one rare human being who has turned her personal loss into a cause that transcends her own pain and provides support and meaning to countless pancreatic cancer patients all over the world. Thank you for being a true friend & cheerleader of the Pancreas & the Pancreatic Cancer community!

Below are some of the excerpts from our meet-up session:

What is your opinion about the status of research in the field and how close we are to finding a cure?

Agi: I almost think that with AI and all the new technology that we have now, we are as close as we can be to finding a cure. (On her optimist outlook) Listen, I live with the word “we are going to beat it (Cancer)! Hope springs eternal.

Did you ever envision that your life’s work would ever involve establishing a foundation for the patient support, advocacy and fundraising for pancreatic cancer research?

Agi: Absolutely not! I am an immigrant, grew up in Hungary, arrived in US as an 11-year-old only child (tie breaker child!) with limited English. This humble start to life made me realize the importance of a strong work ethic and boundless optimism. After finishing my education, I started as a fashion designer and then I met the love of my life Ronnie and together we set up our business, I designed the Adidas products, and he built our global distribution business up and running and we were a successful team! Then Ronnie’s loss spurred me to approach Dr. Howard Reber at UCLA, and the Hirshberg Foundation came to life, and we have never looked back!

For someone who has spent 26 years working with pancreatic cancer patients and their loved ones, supporting them, and giving their suffering a voice and positive direction to inspire changes, please share some of your favorite memories of interactions.

Agi: I must tell you that while I am truly proud of all the efforts and resources that we (Hirshberg Foundation) have provided to the Basic and Clinical research community, what I am really focused on is providing support to the patients. I am proud of the network of support and services that we can call upon all over the country, best centers, best physicians, and staff to refer these patients for treatment and help them in every possible way as they battle this dreaded disease. Providing these patients with all the support and help remains my primary focus to date. To celebrate their courage and to inspire other patients and survivors, I host Agi’s Backyard Barbecue (see pictures), an annual get together where in 60–80 patients, their loved ones come over and share their stories. Every year it so happens that we have newly diagnosed patients that sit on one side and on the other side we get patients who are thriving even after 7,18 and even 23 years post cancer diagnosis! This allows the “newbies” and the “veterans” to share their experiences and support one another and celebrate life. I can tell you no one wants to go home by the end of the night! That sort of energy is infectious and inspires me to do what I do.

Lastly, Tell us your secret Agi? At 78, you look like you’ve cracked the code to a life well lived!

Agi: You can’t help but become sisters and brothers with the patient, so the emotion is always with the patient and that they have the long life. What else could I say? I am an eternal optimist, and I am sure that the cure is just out there, all we got to do is keep going. We can beat CANCER!

June is National Cancer Survivor’s Month and we are happy to share these heartfelt messages with all those facing cancer. All month long we celebrate survivorship and honor those in treatment as we work towards a cancer-free future.

Share your message of hope here. Together, let’s provide support, hope and love with all those facing pancreatic cancer!

In recognition of National Research Month, we’re shining a light on extraordinary scientific advances gaining momentum in pancreatic cancer.  To date, the Hirshberg Foundation has funded over 120 Seed Grant projects leading to significant NIH funding, clinical trials, and improved patient outcomes. Groundbreaking ideas are coming to fruition, including the use of artificial intelligence to analyze CT scans for pancreatic cancer patients and an mRNA vaccine in the pipeline to prevent disease recurrence. The greater pancreatic cancer research community remains committed to discovering answers and we are watching them turn an exciting corner.

This month and throughout the year, we look forward to sharing news from our UCLA laboratories, Seed Grant projects, and updates directly from the headlines. Your generous support has allowed us to increase our research efforts worldwide and we look forward to announcing the results of their efforts!

With your support, we are empowering the medical community to pursue groundbreaking research and initiatives that make an impact across the globe.

Type 3c diabetes develops when the pancreas is damaged in ways that affect its ability to produce insulin. Conditions such as chronic pancreatitis, cystic fibrosis, and pancreas surgery, either complete or partial removal (pancreatectomy), can lead to pancreas damage that causes diabetes. Type 3c diabetes (also known as pancreatogenic diabetes) is diabetes that comes secondary to pancreas diseases, involving the exocrine and digestive functions of the pancreas.

Diabetes is a health condition that occurs when blood sugar, or glucose levels in the blood, are too high. This develops when the pancreas doesn’t make any or enough insulin (a hormone), or the body doesn’t respond to insulin properly and glucose levels rise in the blood.

The pancreas has two main functions in the body:

Exocrine function: Produces enzymes including amylase, proteases, and lipase that assist with the digestion of carbohydrates, proteins, and fats.

Endocrine function: Sends out hormones (mainly insulin and glucagon) that control the amount of sugar in the bloodstream.

Pancreas damage that leads to type 3c diabetes may also affect the pancreas’s ability to produce the enzymes that help with digestion and absorption of nutrients. This condition is called exocrine pancreatic insufficiency (EPI).

The difference between the various types of diabetes is what causes them. Type 1 diabetes is an autoimmune disease in which the immune system attacks and destroys insulin-producing cells in the pancreas for unknown reasons. Individuals with type 1 always need insulin to manage the condition. Type 2 diabetes develops when the body doesn’t make enough insulin and/or the body’s cells don’t respond normally to the insulin (insulin resistance). Individuals with type 2 diabetes may manage the condition with lifestyle changes, oral medication and/or insulin. Type 3c diabetes results from damage to the pancreas that isn’t autoimmune in nature. People with type 3c often also lack the ability to produce enough enzymes their pancreas makes for digestion and absorption of nutrients. In this form of diabetes, the amount of insulin being made by the pancreas can vary. Some individuals will need to take oral diabetes medications while others may also need insulin to manage the condition.

The worldwide prevalence of type 3c diabetes is unknown. It is often misdiagnosed and under recognized because there is not a universally accepted diagnostic criteria. The management of type 3c diabetes depends on the level of damage and what caused the damage to the pancreas but may include oral medications, insulin injections, and diet and lifestyle modifications.

If you or a loved one thinks you have type 3c diabetes, please speak with your healthcare team. We are here to help.

A new study, funded through the Hirshberg Foundation’s Seed Grant program, will focus on the emotional wellbeing of patients and their caregivers as they face pancreatic cancer.

Through a new partnership with the clinical teams at the UCLA Agi Hirshberg Center for Pancreatic Diseases and the psychosocial clinicians at the Simms/Mann-UCLA Center for Integrative Oncology, Dr. Eden Brauer, Dr. Denice Economou, and Barbara Demman have developed a study to identify the optimal way to provide a mindfulness-based intervention to patients and caregivers facing pancreatic cancer. The team has devised an intervention plan to provide four pre-recorded, self-paced modules that will focus on four aspects of the cancer journey and ways to be mindful. These include: 1. Introduction to Mindfulness, 2. Cultivating Self-Compassion, 3. Making the Most of the Moment, and 4. Life Review and Legacy Envisioning.

These modules, recorded by a nursing faculty member who is a mindfulness certified facilitator, will be available online through a study website so participants can engage with them in a flexible way. This will allow study participants to access the four modules when it is convenient for them and as often as they need over a six-week period. The team’s primary objective will be to determine the best way to provide a web-based mindfulness practice and set of tools for those facing pancreatic cancer. Another objective of the study is to collect data on other aspects of the patient and caregiver emotional well-being throughout the cancer journey. This mindfulness intervention aims to track and improve self-reported symptoms of depression, anxiety, spiritual wellbeing, sleep, and quality of life for both the patients and caregivers. 

The Hirshberg Foundation is honored and excited to partner with the UCLA School of Nursing to work towards understanding the ways to support and improve both patient and caregiver emotional well-being throughout the cancer journey. This research is made possible thanks to our community.

Ongoing Projects