New IDF President & Chief Executive Officer, John G. Boyle, Affirms Commitment to CGD Community
In 2017, the Immune Deficiency Foundation (IDF), the national patient organization for people with primary immunodeficiency diseases (PI), including a rare type of PI known as Chronic Granulomatous Disease (CGD), welcomed new leadership. After an extensive national search, the IDF Board of Trustees announced in June 2017 that John G. Boyle is the Foundation’s new President & CEO. John succeeded IDF President & Founder Marcia Boyle who announced her plans to retire in 2017, capping 37 years of passionate leadership.
Since the organization was founded in 1980, IDF has brought together individuals and families living with CGD, helping them learn about this rare disorder and connect with others affected by CGD—something the Foundation will continue to do under new leadership in 2018 and beyond.
John has devoted his career to serving non-profit organizations, most recently as Vice President of External Relations at IDF. He was instrumental in developing a number of new initiatives for the Foundation, including the IDF Walk for Primary Immunodeficiency that launched in 2013, which has now grown to 12 cities across the U.S. and raised in excess of $3.5 million to support vital IDF programs and resources, including funding a new IDF research grant. In addition, as a patient with PI, John has a deep understanding of the challenges and needs facing the PI community, especially the specific concerns of those living with Chronic Granulomatous Disease (CGD).
Ensuring the Needs of the CGD Community Are Met
As John looks ahead, he is keen to build upon IDF’s successful efforts to serve the CGD community. He points to recent accomplishments, such as creating LivingwithCGD.org, a website and blog dedicated to news and information about CGD, to organizing special CGD symposiums at IDF National Conferences and Retreats, where the world’s top CGD specialists share the latest research and insights.
With promising new treatments on the horizon, “there is a lot of focus and interest in CGD,” said John. “From physicians and researchers to pharmaceutical and biotechnology companies, many eyes are on this community. Meanwhile, IDF is the patient organization. We connect all these stakeholders to ensure the needs of patients with CGD are being met because we have their interests at heart.”
How You Can Get Involved
In addition to attending IDF meetings and events, John added that another important way for family members and individuals with CGD to get involved with IDF is to become a Health Access Advocate, which is a volunteer who works with IDF staff to advocate in their state and local areas about state legislative issues related to PI. This volunteer role will be of critical importance in the coming year as IDF continues to fight against discriminatory health insurance practices that force people with PI to pay unfair portions of healthcare costs.
“The CGD community has a unique and important voice in health policy changes happening in 2018,” explained John. “We are here to help ensure that you are heard and that you have a seat at the table. Our staff can work with you to educate legislators and community leaders about state issues that directly affect people with CGD.”
To continue to build upon the strides IDF has made, John welcomes those living with CGD to share their thoughts, ideas and questions.
“We want to hear from you,” said John. “If you know of something that we can do to better serve people with CGD, tell us. If you need information on CGD, whether you are newly diagnosed or have questions about treatment options, we are here for you. You don’t have to go it alone.”
What You Can Do Now:
- Ask a question or make a suggestion as to how IDF can better serve the CGD community. Create an account on the IDF website and contact us.
- Sign up for IDF Action Alerts, and be notified when we need you to make your voice heard regarding policies affected the CGD and PI community. Click here to enter your email address and zip code.
From all of us at IDF, we thank you for your support in 2017, and we wish you happy & healthy 2018!