IDEA Events
Upcoming + Past Events
From informational sessions for parents and children, to adolescent support groups and family days at football games, we’d love for you to join us at one of our quarterly events.
UPCOMING EVENTS:
IDEA Benefit
Join us at Eleven Lakes Brewery for a live performance by Rylee + Jeff Vogel.
Vendors Include:
Muchachos Tacos
Hometown Mobile Cigars
Girlie Jams
Ember Permanent Jewelry
Devour Charctuerie
Bella’s Barkuterie
Casinelli’s Chocolates
Baffle Baskets
Santa Meet and Greet
Eleven Lakes Brewing
10228 Bailey Road #201
Cornelius, NC 28031
Discovery Place Museum - IDEA Patient Education Event
Please join us at the Discovery Place Museum for a gathering and patient information event.
WHO:
Individuals with Primary Immunodeficiency Disease (PI) and Family Members
WHEN:
Sunday, August 25, 2024
10am-1pm
WHERE:
Discovery Place Museum
301 N Tryon St
Charlotte, NC 28202
AGENDA:
10am: Arrival, registration, and mingling; Vendor/exhibit time
10am-12pm: Presentation and Vendor/Exhibit time
Presentation: Intro to IDEA, updates – Niraj Patel, MD,MS
Updates in Management of Primary Immunodeficiency – Niraj Patel, MD,MS
Q&A Session
12-1pm: Lunch, Vendor/Exhibit Time
1pm: Adjourn
1-5pm: Enjoy Discovery Place Museum
PLEASE RSVP HERE:
IDEA Brewery Event
October 1 - October 31st, Round Up for IDEA
Eleven Lakes Brewing
10228 Bailey Road #201
Cornelius, NC 28031
Open Tuesday-Thursday 4pm-10pm
Friday 2pm-11pm
Saturday 12pm-11pm
Sunday 12pm-10pm
Website: www.elevenlakesbrewing/com
RECENT EVENT: DISCOVERY PLACE MUSEUM
When: August 25, 2024
Where: Discovery Place Museum in Charlotte, NC
Who: Over 60 PI Patients and Their Families
Goal: To raise awareness of PI and to educate patients and families so they can take better care of themselves.
After a brief introduction, one of our PI families discussed their patient journey, followed by a Q&A session. Particularly notable was the presence of a new patient family, whose child was recently diagnosed with PI. They had plenty of questions about diagnosis and treatment, which other parents of children with PI in the group helped answer. There was plenty of discussion around 504 plans from seasoned parents, which really helped many other families in the room. The power of parents and education is simply amazing!
This discussion was followed by a brief talk about IDEA Group. We discussed the latest in research including clinical trials, advancements in clinical care, and how patients and families can get involved in advocacy.
Lunch followed, and then children and parents enjoyed the museum until close at 5pm.
We are so thankful to all who attended the event. Connecting with both new families with "seasoned" families alike and helping them through their journey with PI is one of our driving factors. Be on the lookout for more upcoming events!
Special thanks to the Jeffrey Modell Foundation, without whom, this event would not have been possible.
