Spring is finally here, which means summer is coming into focus with thoughts of fun, sun, and of course, the Immune Deficiency Foundation’s (IDF) Retreats this July and August.
This year, IDF will have the retreats, which are small regional conferences, in two great locations: Cleveland, Ohio on July 20 - 22 and in St. Augustine, Florida on August 10 - 12. Each retreat will feature special sessions for the Chronic Granulomatous Disease (CGD) community.
From patients and parents to siblings and partners, IDF has designed the retreats for everyone who is interested in developing better approaches to living with primary immunodeficiency (PI). It’s a great opportunity to connect with others going through similar experiences and have some fun. And the Special CGD Sessions will focus on topics related to living with this rare disorder.
Perhaps, most importantly, the retreats create a time for people living with PI—no matter the specific diagnosis—to get together with others who are experiencing similar situations.
Elisha Gonzalez, whose son, Kal, underwent a successful stem cell transplant in 2014 to treat CGD agrees wholeheartedly.
“I love learning new things at the different symposiums, getting the latest research, and seeing how far the IDF community has come since we first got involved several years ago,” said Elisha, who attended an IDF Retreat in Salt Lake City in 2016. “Also, my favorite part is getting to meet real people who have gone through similar issues that we’ve gone through.”
Also, given the closeness of the CGD community, Elisha added that being at an IDF Retreat is like being with family. And whether you’re newly diagnosed, have had CGD for many years, or have undergone curative treatment, as in her son’s case, you’re always welcome.
“Although we aren’t dealing with the daily challenges of CGD anymore, I was so grateful to feel included,” said Elisha. “Also, in the CGD breakout meeting, I was able to speak to newly diagnosed families and give them an idea of what they could expect in the future, as well as answer their questions about our transplant journey. I was glad to feel valued for my experience.”
Elisha said she’s still in touch with some of the families she met who were newly diagnosed at the time. It’s been wonderful to share information and feel connected. To top it off, she adds, her son and daughter, Kayelee, had a great time too!
“The IDF does a wonderful job planning retreats for the whole family, from informative programs for adults, to creative activities and childcare for the kids,” said Elisha. “It was definitely a lot of fun and, as stay-at-home mom, I especially appreciated the opportunity to get away for a little bit too!”
Elisha has shared her story her family’s experience on the IDF Reel Stories page and with Horizon Pharma’s CGD Connections.
Whether a person is newly diagnosed or has been living with PI for years, IDF Retreats offer an opportunity for individuals and family members to connect with others to learn more about dealing with their diseases.
The educational sessions feature leading physicians and healthcare professionals who address the treatment and management of primary immunodeficiency. Insurance specialists, public policy experts and other qualified professionals discuss life management issues. Also, the youth and teen programs offer both education and fun, with an emphasis on helping the younger members of the IDF community better manage their diseases.
IDF Retreats 2018
July 20-22, 2018
The Westin Cleveland Downtown
Click here to register for Cleveland
Enter discount code: CGD2018
St. Augustine, FL
August 10-12, 2018
World Golf Village Renaissance St. Augustine Resort
Click here to contact us about registration
Enter discount code: CGD2018
Questions? Call 800-296-4433, or click here to e-mail IDF.
Special CGD Sessions at the IDF Retreats are supported by a charitable donation from Horizon Pharma.
IDF Retreats 2018 are supported by charitable donations from CSL Behring, Grifols, Horizon Pharma, and Shire.
This content should not be used as a substitute for professional medical advice. In all cases, patients and caregivers should consult their healthcare providers. Each patient’s condition and treatment are unique. The benefits and risks of any treatment should be discussed with the patient's provider.