This month, February 2018, marks the three-year anniversary of the Immune Deficiency Foundation’s resource dedicated to the Chronic Granulomatous Disease community, LivingwithCGD.org. In 2015, thanks to an unrestricted grant from Horizon Pharma, IDF set out to create the first website and blog dedicated to news and information regarding Chronic Granulomatous Disease (CGD), a rare type of primary immunodeficiency disease (PI).
Experts in the fields developed the site’s valuable content about CGD, covering diagnosis, treatment and more. To augment that important content, over the past three years, IDF has shared stories about individuals and families learning how to effectively manage CGD and some undergoing curative treatments. We’ve covered topics related to new research of CGD, inspiring hope for future generations. Clinical trials providing stem cell gene therapy for CGD are currently underway.
“We appreciate the time and efforts of healthcare professionals, individuals and families from the CGD community who have made LivingwithCGD.org what it is today,” said John G. Boyle, IDF President & CEO. “Since we launched the site, we have helped expand the information available to those facing this disorder and bring the community together,”
Hundreds from the CGD community came together for the first Special CGD Symposiums at the IDF National Conferences in 2015 and 2017 and Special CGD Sessions at the IDF Retreats in 2016. Through it all, LivingwithCGD.org has documented these milestones, and we take great pride in being a trusted source of news and information for the CGD community.
Tragically, despite the progress that has been made in CGD, the community has also lost precious lives to CGD in the past three years. Given the rarity of the disease and the closeness of patients and families around the world, each child or adult whose life has been cut short fills us with a profound sense of grief.
“The fact remains that we want to see cures for CGD and all types of PI,” said Boyle. “To accomplish this goal, we continue to fight alongside each person in our community. Together, we can find hope in learning about innovative research and patient success stories. We can find a way forward by learning how patients and their loved ones can live productive lives with CGD.”
In addition, thanks to the useful information and strong sense of community we have created, LivingwithCGD.org, the site is connecting people around the world.
“I’ve enjoyed reading about the experiences that families are having with being either a patient or a relative of someone affected by CGD, said Carly Ann Koncuk of Birmingham, England, whose son, Aydin, age 3, had a successful BMT in 2016. “I have commented on many posts to help others in need of advice and support.”
Meanwhile, Craig Adams, 41, of Vancouver, BC, Canada, who is a patient with CGD, said he is inspired by success stories of fellow patients who have undergone curative treatments.
“For many years I was under the impression that a stem cell transplant was too risky of a procedure, but that was from information from long ago, “ said Adams. “My perception has changed because of this site, and now I am going through the process to take on the life changing procedure!”
We are deeply thankful to the CGD community for its positive feedback for helping to expand the site’s reach, touching more patients and families in every part of the globe.
As we mark the three-year anniversary, we also wish to express our profound gratitude for the contributions of Harry Malech, Chief, Genetic Immunotherapy Section, National Institutes of Health, who a world-renowned CGD expert who serves as an advisor to the site and coordinates the National Conference Special CGD Symposiums.
“‘Living with CGD’ reinforces the IDF’s overall educational mission to support patients,” said Dr. Malech. “We support their efforts to continue to raise awareness for CGD and the primary immunodeficiency community.”
Yes, together, we have made great strides, and by continuing to connect with us, sharing your stories, comments, and ideas, we’ll grow stronger still.
As always, we encourage you to share your stories and feedback with us! Click here to e-mail us.