On Feb. 28, Rare Disease Day recognizes and celebrates the more than 300 million people around the world living with one of more than 7,000 rare diseases. In honor of Rare Disease Day, the World of Promise podcast hosts a special guest this month.
Jodi Taub is a therapist based in New York City with more than 24 years of field-based experience treating an array of mental health and emotional issues. She is a Licensed Clinical Social Worker with experience working with children and families, and she lives with Primary Immunodeficiency.
Among the topics that Taub discusses with World of Promise host Anthony Farina on this episode is the importance of mental health for both patients and caregivers and the challenges that those living with rare diseases face in a post COVID-19 world. The episode also addresses the importance of sleep as well as why Rare Disease Day is such an important day of awareness for those living with rare diseases.
Project Healing Waters Fly Fishing is a nonprofit organization whose mission is to use the sport of fly-fishing and associated activities as a means of physical and emotional recovery for disabled veterans and wounded, injured and ill military service members. In 2020, some employees at CSL Behring formed a partnership with this organization. On this episode, Project Healing Waters Chief Operations Officer and U.S. Army veteran David Folkerts talks about the program’s mission, how it supports veterans and current military service members, and how you could get involved if this sounds like a program you’d like to be part of.
Megan Adediran, President of the Hemophilia Foundation of Nigeria and Durhane Wong-Rieger, President and CEO of the Canadian Organization for Rare Disorders, join the podcast to talk about the importance of finding new and innovative ways to expand access to life-saving therapies for people living with bleeding disorders.
When it comes to dating and starting a new romantic relationship, people who live with rare and serious diseases face some unique questions. When is the right time to tell that special person about my condition? And how do you bring the topic up to a potential romantic partner?
On a new episode of the World of Promise podcast, host Anthony Farina sat down with two experts to talk about this topic. Joining Anthony was Dr. Nancy Irwin, a Los Angeles-based clinical psychologist and author who has appeared on television shows such as “The Doctors” and “Anderson Live” with Anderson Cooper. Also participating in the conversation was Dr. Craig K. Svensson, dean emeritus of the Purdue University College of Pharmacy and author of “When There Is No Cure: How to Thrive While Living with the Pain and Suffering of Chronic Illness.”
On a new episode of World of Promise, host Anthony Farina is joined by Stefan Merlo, Vice President of Commercial Development at Seqirus, and Roberta Duncan, the vaccine company's Vice President, mRNA Program Lead, to discuss what’s next in terms of flu vaccine technology. They discuss the potential of aQIVc flu vaccine technology as well as sa-mRNA and how it differs from other mRNA vaccines.
COVID-19 has offered the biotech industry many lessons. Among the lessons that stands out to Lorna Meldrum is the importance of being prepared for both seasonal flu and the potential for a pandemic outbreak.
Meldrum is Vice President of Commercial Operations, International Markets and Pandemic at Seqirus, one of the world’s leading influenza vaccine producers, and she’s the latest guest on the World of Promise podcast.
During her conversation with host Anthony Farina, Meldrum discusses the challenges businesses have faced during the pandemic and how Seqirus is continuing to expand its seasonal and pandemic preparedness efforts in influenza.
Amidst the development and rollout of COVID-19 vaccines around the globe, conversations around vaccine safety are at an all-time high.
On a new episode of the World of Promise podcast, Gregg Sylvester, Chief Medical Officer and Head of Medical Affairs for leading vaccine producer Seqirus, sits down with host Anthony Farina to discuss how Seqirus ensures that its vaccines are safe – the processes that are implemented and why this topic is so important to an organization on the front lines to protect public health.
Innovation was key to creating effective vaccines in the fight against COVID-19. Now, those innovations are being studied for the creation of leading edge influenza vaccines, explains Ethan Settembre, VP, R&D for Seqirus. He talks about how Seqirus is leveraging existing cell and adjuvant technology to deliver effective vaccines and exploring the combination of the two in aQIVc, the company’s next pipeline vaccine. Ethan also speaks to self-amplifying mRNA, the next-generation mRNA platform Seqirus is evaluating for influenza.
The theme for this year’s World Hemophilia Day on April 17 is “Adapting to Change.” The day raises awareness for hemophilia and other bleeding disorders. This episode features Dr. Glenn Pierce, Vice President, Medical, for the World Federation of Hemophilia and Dr. Roshni Kulkarni, professor and former Director of Michigan State University’s Center for Bleeding and Clotting Disorders. They talk about changes in hemophilia and bleeding disorder treatments and how this past year has changed everything.
In honor of Women's History Month, this episode features two CSL leaders. Karen Neave, Senior Vice President and Chief Risk Officer, and Antje Michel, General Counsel, share their career journeys, the obstacles they've overcome and offer advice for other women working in biotechnology. During the 20-minute conversation, they also offer insights into how they achieved success and work/life balance, particularly in today’s COVID-19 remote working environment.
To thrive in the fast-moving field of biotechnology, embrace learning and career development, Elizabeth Walker, Executive Vice President and Chief Human Resources Officer for CSL, says on a this episode. As head of human resources for one of the world’s largest biotechnology companies, Walker said employee development remains a priority.
“It benefits – not only the individual – but CSL as well,” she says. “Over time we have seen other organizations pull back on investments in this area and shift the burden of development entirely to employees. We think that's a mistake. We think development has many benefits. It helps to improve innovation. It increases engagement and retention over time and enhances overall productivity.”
In 2020, COVID-19 dominated the headlines and much of the focus for people who work in biotechnology. While the global pandemic continues, there is hope in the vaccines currently being distributed throughout the world. At the same time, seasonal influenza remains a concern.
On a new episode of the World of Promise podcast, Dave Ross, Vice President, Commercial Operations North America, for Seqirus, discusses how his organization’s expertise in influenza vaccines could help with the distribution and immunization practices necessary to combat COVID-19. He also shares additional insights from his team’s work with influenza and how it relates to the COVID-19 pandemic.
For more than 30 years, Mark Hill has worked in the digital technology space for large, global biotech and pharmaceutical companies. Now, he is Chief Digital Information Officer for CSL, the world’s third largest biotechnology company. On a new episode of the “World of Promise” podcast, Mark sits down with host Anthony Farina to chat about his experiences, what he’s learned and where he sees digital transformation taking biotechnology in the near and not-so-near future.
As an Army veteran, Mark also talks about what military veterans can offer the biotech space, as well as how being the middle child of seven kids has helped him and others succeed in the workforce. Finally, Mark addresses how digital technology will help to transform experiences for patients and plasma donors and why he believes it’s critical that companies like CSL embrace digital transformation.
On this episode of "World of Promise," host Anthony Farina interviews Steve Marlow, General Manager of Seqirus, one of the world's leading flu vaccine businesses. Steve also has 20 years of experience in biotech and he talks about the increased demand for flu vaccines during this year's Northern Hemisphere flu campaign.
This week is International Plasma Awareness Week, and in honor of the week, Willy Pardinas, General Manager and Vice President of CSL Plasma sits down with “World of Promise” podcast host Anthony Farina to discuss the importance of plasma donation to people around the world living with rare and serious diseases. The conversation also touches on what a donor can expect during their first visit to a plasma center and the steps CSL Plasma centers take to protect donors during the COVID-19 pandemic.
Around the globe, one of the biggest challenges rare disease patients face is getting a timely and accurate diagnosis of their condition.
A new report by the Economist Intelligence Unit – the research and analysis division of the Economist Group and the world leader in business intelligence – takes a look at the challenges facing patients living with rare diseases across five Asia Pacific economies. Titled “Suffering in Silence,” the findings of the report have been published in a 9,000-word white paper that explores health care professionals’ understanding and management of rare diseases in Australia, China, Japan, South Korea and Taiwan.
On a new episode of the World of Promise podcast, host Anthony Farina sits down with the report’s Editor, Jesse Quigley Jones. Jones talks about what surprised him in the findings and what he believes health care providers, government and industry can learn from the report.
Santonio Holmes is remembered for many things by football fans, including his “perfect catch” in Super Bowl XLIII, which earned him that game’s MVP trophy. But after retirement from football, Holmes is still working on building his legacy.
He’s doing so through the III & Long Foundation, an organization he established to help families affected by Sickle Cell Disease. Holmes and his family are one of those families, as his son, TJ, lives with Sickle Cell Disease.
On a new episode of the World of Promise podcast, Holmes, TJ, and TJ’s mom, Nicole King, talk about TJ’s experiences with Sickle Cell Disease and how it affected their family. They talk about the disease from a caregivers’ perspective in honor of World Sickle Cell Day, which is on June 19.
On May 20, people who work in biotechnology celebrated Clinical Trials Day, a day that highlights the important role clinical trials play in developing therapies for our patients.
This year, as the COVID-19 pandemic continues to impact people around the world, clinical trials are as important as ever. On a new episode of the World of Promise podcast, host Anthony Farina talks to Deirdre BeVard, CSL Behring’s Senior Vice President of R&D Strategic Operations, about clinical trials and how they benefit patients. Deirdre shares her perspective on why clinical trials are so critical to the advancement of biotechnology and how clinical trials are being impacted by COVID-19.
As the COVID-19 pandemic continues around the world, rare disease patient groups continue to provide support and outreach to their communities. For the World Federation for Hemophilia (WFH), this year is an especially important one to mark World Hemophilia Day on April 17.
“Particularly in light of what we’re all experiencing right now, I think the most important thing is that our global bleeding disorders community stays connected,” says Jennifer Laliberté, Director, Strategic and Community Partnerships for WFH on a new episode of the World of Promise podcast. She said celebrating World Hemophilia Day, which this year marks 30-plus years of raising awareness for hemophilia and other bleeding disorders, is a way to demonstrate the solidarity of the community. “We stand together (and) we continue to maintain those links that unite us, and those common goals that unite us,” she says during the interview, which also features Dr. Assad Haffar, Medical and Humanitarian Aid Director for WFH.
The conversation with podcast host Anthony Farina also touches on what World Hemophilia Day has accomplished throughout its 30-plus years and why it is important to WFH that access to care for people with bleeding disorders is a priority, no matter where in the world patients are located.
On this episode of World of Promise, host Anthony Farina talks to Tony Strickland, Head of Enterprise Security at biotech leader CSL Behring, about being on the front lines of company security during the COVID-19 pandemic. Strickland has been working to protect employees and patients from the Coronavirus since the outbreak in December. Strickland answers questions about what people can do to protect themselves and the lessons he has learned while working on the front lines to protect people from the global outbreak.
Two days after David Fajgenbaum was diagnosed with Castleman’s Disease, a rare disorder that affects the lymph nodes, he was having his last rites read to him. A former quarterback at Georgetown University who was in medical school at the time of his diagnosis, Fajgenbaum began researching his own disease and remarkably, his research led to remission. Now, Fajgenbaum has published a book, "Chasing My Cure: A Doctor’s Race to Turn Hope into Action." On the latest episode of “World of Promise,“ Fajgenbaum discusses his story and how he is now living his life “in overtime."
People who work for biotech leader CSL Behring have a special passion for patient focus, explains the company’s Chief Medical Officer Charmaine Gittleson.
“I think that people who work here within CSL – we care. That’s why we’re here,” she said during a recent interview with CSL’s Chief Communications Officer, Anthony Farina. The interview was featured on a recent episode of the CSL NOW Podcast, released internally for CSL employees.
As Chief Operating Officer for the world’s fifth largest biotech company, CSL, Paul McKenzie has strong insights on what the future holds for the industry, innovation, and how leaders can best work on behalf of patients around the world. On this episode of "World of Promise," he sits down with host Anthony Farina to share his thoughts on these and other topics.
In the United States, football season is about to get underway. But for rare disease researchers, there is no off season.
That’s why for Uplifting Athletes, raising awareness and funds in the fight against rare diseases is a year-round endeavor. Since the nonprofit organization consists of a national network of chapters run by current football student-athletes, the football season does have some special significance, however.
That why on a new episode of the “World of Promise” podcast, host Anthony Farina was excited to sit down with Rob Long, Executive Director of Uplifting Athletes.
“There are roughly 30 million college football fans in the United States and there are roughly 30 rare disease patients in the United States,” says Rob. “Our job is to make those two overlap and to raise that awareness,” he says.
For Rob, the connection to rare disease is personal. An all-American punter at Syracuse University, Rob’s football career was cut short after he was diagnosed with anaplastic astrocytoma, a rare form of brain cancer. He had to put aside his desire to play in the NFL but instead answered another calling as a leader in the rare disease community. Listen to Rob share his story on this episode.
On this episode of "World of Promise," host Anthony Farina talks to Tahirah Austin, who is living with Sickle Cell Disease, about the challenges she faces, and has faced, as a person with the condition. The episode also features a segment from an expert on Sickle Cell Disease, who offers some additional advice for patients and also talks about what the future holds for people living with the condition.
When Jeffrey Modell continually begged his parents to “do something” about his Primary Immunodeficiency, it broke their hearts. But Vicki said that she and her husband, Fred, saw their son’s words as an “impassioned plea.” In 1987, one year after Jeffrey’s death, the Modells founded a foundation in their son’s name. Since that time, the Jeffrey Modell Foundation has established a network of more than 800 expert physicians serving nearly 300 cities in 86 countries, spanning six continents. Indeed, the Modells have “done something.”
The Modells story is the subject of a documentary being released on June 11 through all digital and video on demand platforms. Titled “Do Something: The Jeffrey Modell Story,” the movie was produced by some of the same people behind ESPN’s popular “30 for 30” films.
During their conversation with “World of Promise” host Anthony Farina, the Modells talk about the film, the time they spent with Jeffrey, the work being done by the Jeffrey Modell Foundation, and they share advice for parents who may be going through similar circumstances with their children.
On this episode of "World of Promise," Dr. Andra James of Duke University School of Medicine discusses Von Willebrand Disease, how it affects women and girls, and the promise of biotechnology to improve the lives of people with bleeding disorders. This episode also features Mary Ann Massolio, who is living with Von Willebrand Disease, and insights from Debbie Bensen-Kennedy of CSL Behring.