The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
Meet our leaders, advisors, and staff.
IDF’s Board of Trustees, Medical Advisory Committee, Nurse Advisory Committee, Youth Advisory Committee, and staff leadership team provide vision, experience, and knowledge as we aim to uplift the lives of people with PI.
Tracy is the solo mom to a recent college graduate with a primary immunodeficiency and became an active IDF volunteer in 2012 through advocacy and fundraising. With Maddie’s Herd, a grassroots youth advocacy group founded by her daughter during 8th grade, she is dedicated to amplifying the voice of the rare disease community, especially PI. Shaw has served on the IDF Board of Trustees since 2018. She has also worked closely with MadeVisible and the National Organization of Rare Disorders (NORD).
Shaw is a business growth strategist for industries spanning financial services to healthcare, and is dedicated to enriching the customer experience, streamlining process improvements, and developing innovations that enhance ROI. Currently, she leads the client engagement strategy for Equitable. Shaw also serves as Chair of the Board of SCORE and is a member of CHIEF. She earned an MBA from Western Connecticut State University and is currently a Doctoral candidate at Adler University.
Additionally, Shaw has spent time as a youth soccer coach and Girl Scout cookie mom while holding a patent for 401kSecure, and (very) briefly, a world record.
Seth is President and CEO of Moët Hennessy North America, part of the LVMH Group, where he is responsible for leading the development, growth, and overall business for the company’s storied portfolio of iconic champagne, wine, and spirits brands.
Prior to joining LVMH, Seth spent 19 years at PepsiCo, where he held various senior General Manager, Marketing, and Sales roles, including President of North America Nutrition and CMO of PepsiCo Beverages North America.
Seth is a passionate people leader, adept at creating strong team cultures. He’s received numerous accolades, including honors from the International Television and Radio Society “Hall of Mentorship,” American Advertising Federation (AAF) “Hall of Achievement,” Business Insider “50 Most Innovative CMOs,” AdAge “Media Maven”, and more.
Seth received his Bachelor of Science in Television, Radio & Film Management from the S.I. Newhouse School of Public Communications at Syracuse University and his Master of Business Administration from The Ross School of Business at The University of Michigan. Seth lives in northern New Jersey with his wife Faith and daughters Emma, Noa, and Samone.
Sonia, President and Founder of OppsSpot, LLC, is an independent-minded entrepreneur and mentor to small technology companies looking to commercialize their ideas. During her career, Sonia has held executive management and senior technical positions and has co-founded several companies. Sonia has over 30 years of experience in systems engineering, quality systems, business development, and program management. Over the years, Sonia has helped grow companies in the manufacturing, electronics, software, information technology, medical devices, and mining industries by designing and optimizing their systems as well as managing their business development needs.
Over the last 20 years, Sonia has been supporting small businesses and start-ups with their R&D needs by leveraging Government contracts/grants, the SBIR/STTR programs, and assisting with their commercialization efforts. She supports the University of Arizona Center for Innovation as a subject matter expert and is on the Systems and Industrial Engineering Industry Advisory Committee.
Sonia has a BS and MS in Systems Engineering from the University of Arizona.
Sonia volunteers her time with Immune Deficiency Foundation (IDF) and the American Heart Association (AHA) to raise awareness of primary immunodeficiencies, heart disease, and STEM education.
In her free time, Sonia loves to hike, travel, and paint.
Jorey is the President & CEO of the Immune Deficiency Foundation (IDF). In this role, she provides strategic leadership in partnership with the Board of Trustees and has operational responsibility for the management of staff and implementation of essential IDF programs that benefit the primary immunodeficiency community. Jorey promotes and fosters IDF’s unique mission, building relationships with key constituencies with a goal towards increasing impact and improving outcomes. She holds a steadfast commitment to IDF’s vision to improve the quality of life of those affected by primary immunodeficiency so they can live the life they choose to live with fewer health complications. Jorey is a nonprofit executive by trade and an advocate for the immunocompromised by choice.
Before joining IDF, Jorey was with the March of Dimes for 20 years. She held roles as Vice President of Change Management, Vice President of Organizational Effectiveness, Area Director, Regional Director of Public Affairs, and State Director of Public Affairs. Having held key roles in volunteer development, mission, operations, revenue, culture change, and internal communications, Jorey has developed a deep understanding of the nonprofit sector. She has a wide breadth of experience across multiple functional areas, including developing and implementing new operating models, restructuring, and transformation initiatives.
Jorey is a results-oriented leader who places a high priority on establishing trust and stakeholder buy-in quickly by building authentic relationships and listening to learn.
Before joining the March of Dimes, Jorey worked in government relations for the Greater Houston Partnership in the policy office of a former Texas Governor and began her career as an English teacher. She earned her degree from Texas A&M University with a major in English and a minor in psychology. Jorey resides in a small town outside of Austin and San Antonio, Texas, with her husband of 27 years and their Goldendoodle Charlie and brown tabby Scout. She and her husband have a 24-year-old son who is currently in graduate school.
Jason Angelos is a Managing Director with Accenture and the North American lead for their Corporate Strategy practice. He partners with Boards, CEOs, and BU leaders to help them navigate their changing environments and create competitive advantage.
Jason lives in Southern California with his wife, Stephanie, and their three children – Sophia, Reese, and Gavin. He is passionate about his family, the beach, snow skiing, travel, USC Trojan football, and the opportunity to team with others to improve the experience and outcomes of those living with primary immunodeficiency. Jason’s connection to the IDF comes through his son, Gavin, who is thriving with XLA.
Pete grew up in upstate New York as one of four children to parents who were a high school science teacher and social worker. He was very active in sports in high school, college, and continues through today. Pete and his lovely wife of 44 years, Elizabeth, have two adult sons and two granddaughters. With his boys, he was active with Indian Guides, church youth groups, and coaching kids’ sports. Following a passion for computer graphics, Pete earned a B. Arch, M.S., and Ph.D. from Penn State, Cornell University, and Rensselaer Polytechnic Institute; and is considered a pioneer in the field.
Professionally, Pete progressed from doing hands-on R&D into executive management with experience in operations ranging from Silicon Valley startups to “most admired” corporations and the nation’s largest national lab. He has been active in retirement as an advisor to startups, as a university research board member, as a volunteer for the Immune Deficiency Foundation (IDF), and as a Court Appointed Special Advocate (CASA) for neglected and abused children. Pete’s health started to decline in his mid-30s and spiraled downward to multiple bouts of pneumonia annually in his mid-40s. After many doctors tried to fix the symptoms, one doctor noticed an anomaly in a regular blood test that led to a CVID diagnosis and IVIG treatment. Pete is very thankful for the scientists, doctors, plasma donors, IVIG manufacturers, and medical professionals who have enabled him to be a better husband and father, and to continue his career successfully into a wonderful retirement. He is also thankful to have the opportunity to give back by volunteering for IDF (in peer support, advocacy, and plasma awareness) to help others with immune deficiencies to enjoy a good quality of life.
Ms. Dansereau is an experienced nurse leader with over 40 years of experience in pediatric nursing. Her clinical expertise is in the specialty of hematology, oncology, and cell and gene therapies. Over the past 20 years, she has focused her career within the clinical research setting, where she has led multidisciplinary teams in the development of novel therapies and treatments for pediatric indications, including primary immune deficiencies. In her current role, she now is the Director of Operations for the Gene Therapy Program and the Director of Clinical Research Nursing at Boston Children’s Hospital, where she provides oversight for the nursing, clinical management, and operations of one of the largest pediatric gene and cell therapy programs in the United States.
Colleen serves as the Chair of the IDF Nurse Advisory Committee, leading the committee’s efforts to provide patient and clinician support and education to the IDF community.
Colleen received her undergraduate degree in nursing from Salve Regina College, Newport, RI, and her graduate degree in clinical research nursing from The George Washington University, Washington, DC.
Charlene is Partner with the Pathfinder Strategies’ where she is focused on Executive Leadership Development, Career Counseling, Coaching, and Advocacy work. Current Coaching and Mentoring projects at Tech Launch Arizona, Mass General/Brigham – Harvard Medical School, GE Healthcare, UCSD, and Elekta Healthcare.
She led a successful turnaround as CEO of El Tour de Tucson, a nonprofit organization with a primary focus on raising funds for other nonprofits while promoting health & wellness through cycling.
She is a retired executive after 30 years with GE Healthcare and her last position was GM and Vice President of the West Zone and Canada for GE Healthcare, where she held responsibility for a $1.3B Commercial Operations, Sales, Profitability, and People Development Organization. Charlene was the Director of Sales for the QuickBooks product for Intuit Company, where she had P&L responsibilities and a 500-person contact center and digital distribution.
Previously, Charlene was the General Manager of Sales Force Excellence at GE Healthcare with responsibilities for sales distribution & deployment, compensation, sales enablement tools, and learning & development for the US Commercial Organization. She also led the X-ray and Women’s Healthcare business in the US and Canada. And held the position of Chief Learning Officer for the GE Healthcare Commercial Organization.
She is also trained as a coach in the self-awareness curriculum. She was co-chair of the GE GLBTA global organization involved in outreach in her community and was an active member of the Women’s Network at GE.
She has held many board positions at the Milwaukee Urban League, Chair of Out & Equal, Chair of the American Heart Association SW AZ, and is currently a board member of the AHA and EL Tour de Tucson and Finance Committee of Tucson Medical Center.
Charlene and her partner Anne Hunt recently moved to Williamsburg, VA, to be closer to family.
Adrian presently serves as Sr. Vice President and General Counsel of March of Dimes. As General Counsel of March of Dimes, Adrian is responsible for managing and directing all aspects of the organization's legal strategy and operations. Adrian has over two decades of legal experience, with specialties in sponsored research and development, intellectual property rights and licensing, nonprofit governance and compliance, regulatory compliance, corporate governance, commercial contracts, employment law, and litigation.
Adrian served as general counsel for a publicly traded life sciences company that focused on regenerative medicine. He was also a partner in private practice, first at McKenna Long & Aldridge and later at Dentons US LLP, where he counseled and represented Fortune 500 companies and a variety of nonprofit organizations, both domestically and internationally.
Andy Robins is a Partner at Akerman, LLP, where he is Co-Chair of the National Hospitality Sector Practice. His practice is focused on the structuring and development of mixed-use resorts, including hotels, branded and unbranded residences, whole ownership rental programs, and shared ownership. He regularly negotiates purchase and sale agreements, development agreements, and hotel management and franchise agreements for developers and for leading international hotel brands. His clients include a wide variety of resort developers, capital providers, and operators. He works primarily on projects located in the United States, Latin America, and the Caribbean. Andy also advises clients on acquisition strategies for mixed-use real estate and on creative and value-enhancing mechanisms for addressing deficiencies in governance regimes and operating agreements. Andy is an A-V-rated lawyer by Martindale Hubbell and is recognized by Chambers USA in the Leisure & Hospitality category, by Best Lawyers in America, and by Florida Super Lawyers. He is a frequent speaker on his areas of Expertise.
Andy is a member of the Board of Directors of the Festival of the Arts Boca and is a past chair of the Jewish Federation for South Palm Beach County and Hillel of Broward and Palm Beach Counties.
Harper Spero is a business coach, consultant, podcast host, and facilitator. Prior to starting her business in 2014, she spent ten years in marketing, public relations and event production for a private jet company, several beauty brands, a SaaS company, a music management firm, and a beauty-focused PR firm where she got her first gray hair on her first day of the job. Tweeting about lipstick became meaningless when a life-altering surgery, a result of an extremely rare primary immunodeficiency, Hyper IgE Syndrome, became her reality. Her last office job was producing events for Marie Forleo, Lower Eastside Girls Club, Team Rubicon, and the David Lynch Foundation.
Now, she’s a business coach for service-based solopreneurs and small business owners. In 2018, after years of not finding content related to her rare condition that resonated with her, Harper launched Made Visible, a 100-episode podcast that amplified stories of people living with or affected by invisible illness. In 2020, she began facilitating writing classes for the Made Visible community to give them a safe place to share, feel more seen and heard, and learn from established authors. She is working with companies to create content, community, and inclusivity amongst employees living with invisible illnesses and receive support from their employers and colleagues.
When she’s not coaching, podcasting, consulting, or connecting people, you can find her seeing live music internationally, gazing at sunsets on the beach, and creating kitchen concoctions without following recipes. Harper is originally from New York City and currently lives in Tel Aviv.
Dr. Sullivan trained at the Unversity of California, San Francisco (UCSF) and Johns Hopkins and has been at the Children’s Hospital of Philadelphia since 1993. She is the Division Chief of Allergy Immunology, and oversees one of the largest North American clinics for inborn errors of immunity.
She is a past president of the Clinical Immunology Society and has served on the Basic and Clinical Immunology Committee of the AAAAI and the AAAAI Board. She co-edits Stiehm’s textbook on Immune Deficiencies.
Peter is an experienced operator in growth-phase startups to global corporate environments. He is currently the Chief Technology Officer at BuzzFeed.
Peter has built both consumer and enterprise products and fundraised from a diverse range of investors across industries—health (The Mighty, backed by GGVC, Upfront, and WPP Health), SaaS (Buddy Media, backed by Greylock, acquired by Salesforce), media & e-commerce (Refinery29, backed by Stripes, WPP, Scripps).
Peter got his training wheels in financial services and made the transition from tech to the business side—building and managing trading and wealth management platforms at Morgan Stanley, Citi, and UBS. Peter studied Computer Science and Electrical Engineering at Carnegie Mellon.
He also loves human-interest photography. His last solo project was an interactive exhibit of New York City street musicians at Tribeca Cinemas Gallery.
IDF has worked to improve patients’ lives for over 40 years through a commitment to our mission.
Thanks to the generosity of our donors, IDF is able to provide world-class support for patients with PI each year.
IDF is looking for passionate and dedicated individuals who share our vision and commitment.
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