Thursday, November 5, 2020
Open for preview at Noon ET
Chat with IDF from 4-6 PM
The IDF National Summit is going virtual. Through an exciting new virtual platform, you will engage with members of the PI community from across the country without the need to travel. Visit the conference site ahead of time to familiarize yourself with the platform and explore the schedule of robust educational programming, dynamic presenters, and virtual exhibit hall offerings.
A Family Activity Center with web-based activities will be available throughout the Summit.
Friday, November 6, 2020
Programming Available 5PM - 9PM ET
Opening Keynote Session: IDF Welcome & Summit Preview
Join IDF President and CEO, John G. Boyle, and IDF Board of Trustees Chair, Dr. John Seymour, to learn about IDF’s mission and initiatives as we navigate a new landscape. The session will help participants make the most of the weekend, including tips on how to maximize your virtual conference experience. The opening session will also include updates on IDF programming and initiatives. This is a great opportunity to connect and learn how you can be part of IDF’s evolving community.
Keynote: COVID-19: Where We are Now & How do We Approach Winter?
Dr. Kathleen Sullivan, Children's Hospital of Philadelphia
For families living with a primary immunodeficiency, the coronavirus pandemic has presented unique challenges—from potentially limited access to medical care and supplies to increased anxiety and stress. What challenges has our community faced? What will the lasting impact be? During this opening session, Dr. Kathleen Sullivan explores the impact the pandemic has had on the PI community, what the greatest challenges have been, and what the ‘new normal’ will look like and when it may come about.
Meet & Greet For Young Adults
Young adults living with a primary immunodeficiency between the ages of 18 to 35 are invited to join a special session where participants will have the opportunity to meet with others who share similar experiences. The coronavirus pandemic has limited our ability to socialize with friends in person, but that doesn’t mean we can’t connect virtually. This session will include the opportunity to network, discuss some of the challenges faced by individuals with PI, and most importantly, have a little fun!
Saturday, November 7, 2020
Programming Available 10 AM - 7 PM (ET)
Keynote: What's New in the World of PI?
Manish Butte, MD, PhD, University of California, Los Angeles
Researchers around the world are working to find better ways to prevent, detect, and treat primary immunodeficiencies. Some of the many active areas of research include causes, treatments, laboratory tests, and supportive care. This session highlights what is new in the field of primary immunodeficiencies and what might be on the horizon, such as genetic testing, treatment, and diagnosis.
The Connection between Mental and Physical Health
Donna Marie Meszaros, PhD, Abaris Behavioral Health, Novi & Private Practice, Livonia
The body and mind are often considered as separate entities. But where mental and physical health are concerned, the two should not be thought of as distinct from one another. In fact, the two often go hand in hand. This discussion will focus on mental health challenges and symptoms sometimes experienced by people living with PI, and strategies for coping with everything from isolation to anxiety to depression.
Immunology 101 and Overview of Treatment Options
Patricia Lugar, MD, Duke University School of Medicine
Primary immunodeficiencies (PI) are a group of more than 400 rare, chronic disorders in which part of the body’s immune system is missing or functions improperly. People with PI are more susceptible to infections. Fortunately, with proper medical care, many live full and independent lives. This session will present our current understanding of the immune system and the variety of treatment options available, including antibiotics, immunoglobulin replacement therapy, interferon-gamma therapy, stem cell transplant, and gene therapy.
GI Issues & PI
Sarah Glover, DO, AGA-F, University of Mississippi Medical Center
The gastrointestinal tract has more immune cells than any other organ in the body, so it stands to reason that those with a primary immunodeficiency are more at risk for gastrointestinal complications. Why do GI complications happen? How often do they happen and who is at risk? What are the GI complications of PI? How can we manage them? Join Dr. Sarah Glover who will answer many of your questions concerning GI complications and PI.
What is a carrier? What does it mean to be a carrier?
As a carrier, the individual doesn’t have the disease associated with the mutation but may pass this mutation on to a child. Many primary immunodeficiencies (PI) have a genetic origin and most are inherited in one of three different ways: X-linked recessive, autosomal recessive or autosomal dominant. During this session, we will explore this topic to provide participants with a firmer understanding of genetic carriers for PIs.
Lung Issues & PI
Andrej A. Petrov, MD, University of Pittsburgh Medical Center
Pulmonary issues are common among patients with primary immunodeficiencies (PI) and management of these disorders can improve the quality of life dramatically for PI patients. Therefore, the patient’s knowledge of pulmonary disorders related to PI is critical for optimal management. This session will explore the identification and management of pulmonary conditions that are related to immunodeficiency disorders.
Caring for the Caregiver
Rebecca Wang, MA, LCP, Partners in Change: Psychological and Community Services, PLC
While caring for a loved one has many rewards, caregiving can also be physically and emotionally wearing and the demands involved can strain even the most resilient individual. If you are a caregiver, it is important to take steps to preserve your own health and well-being. Join IDF and discover the many resources, tools, and strategies to avoid caregiver burnout.
PI & the Golden Years: Long Term Effects of PI
Roger Kobayashi, MD, Clinical Professor UCLA School of Medicine, Los Angeles, CA
People with primary immunodeficiencies (PI) are living longer than ever because of advances in diagnosis and treatment. As more people with PI reach older age, they face the added stress of managing a chronic condition and any age-related complications of their PI. Older people can also feel isolated, leading to problems of loneliness and depression. This session will explore ways to help maintain good physical and mental health and a sense of control, throughout our senior years.
Can I Really Ask that Question? Getting the Answers You Need for Today’s World
Terry Harville, MD, PhD, University of Arkansas for Medical Sciences
This session is designed to cover the issues for people with primary Immunodeficiencies that are often left unspoken. Is it okay to get a tattoo? Are there some forms of contraception I should avoid? No question is off-limits. This session is intended for adults.
Understanding Immunological Testing: What Do My Lab Tests Mean?
Kara McNamara, MD, Cleveland Clinic
Laboratory testing is necessary to determine the presence of a primary immunodeficiencies (PI). Information regarding the types of organisms, the sites of infection and the therapies required to treat the infections often help focus the laboratory studies. During this session, participants will learn the latest about diagnosis and treatment of PIs.
Keynote: Autoimmune Issues & PI
John Routes, MD, Medical College of Wisconsin
Many times, abnormalities in the immune system that lead to primary immunodeficiency diseases also result in immune dysregulation, which is an immune response that is not properly controlled or restrained. This can lead to autoimmunity, one form of immune dysregulation in which the immune response is directed against normal parts of the body such as cells, tissues or organs. During this session, attendees will learn the causes and factors involved in triggering an overactive response of the immune system, current treatments available for autoimmune disorders, and the importance of offering interdisciplinary care for PI patients suffering from autoimmune issues.
Meet & Greet (for all attendees)
You are invited to join a special session where participants will have the opportunity to meet with others who share similar experiences. The coronavirus pandemic has limited our ability to socialize with friends in person, but that doesn’t mean we can’t connect virtually. This session will include the opportunity to network, discuss some of the challenges faced by individuals with PI, and most importantly, have a little fun!
Sunday, November 8, 2020
9 AM - 1:30 PM (ET)
IDF and YOU!
Please join us as part of the collective voice of the PI community as we discuss moving forward together.
Ig Therapy: IVIG & SCIG: Tips & Tricks
M. Elizabeth Younger, CRNP, PhD, Johns Hopkins University School of Medicine
There are several specific medical therapies available for patients with primary immunodeficiencies (PI). Effective therapies are a reality for most PI patients, and optimize health and improve quality of life. In this session, Immunoglobulin therapy for antibody disorders will be discussed, including the risks and benefits of each in addition to some tips and tricks to minimize common issues.
Keynote: The Power of Plasma: Person-to-Person, the Process, Beginning to End
People with primary immunodeficiencies (PI) rely on plasma protein therapies to manage their conditions. The process by which human plasma is collected, tested, and eventually fractionated into plasma products, such as Ig replacement therapy, is complex. There are many different entities involved in the chain that enable plasma to go from a donor to a finished plasma product that can be used by a person with PI. Join us for a look at the process,