Just after being diagnosed with specific antibody deficiency (SAD) in 2018, Darcy Gott received a box of pamphlets and children’s books in the mail, courtesy of the Immune Deficiency Foundation (IDF). Since then, the college senior has embraced her role as an active member of the IDF community. She’s attended IDF National Conferences, Teen Escapes, and IDF Youth Forums, participated in Walks for PI, and organized other IDF fundraisers.
While those activities shifted to virtual during the pandemic, they’re slowly making their way back to in-person — starting with the upcoming IDF Teen & Young Adult Escape, and Gott is jumping right in to help organize the event.
Set for July 22-24 at the Chicago Marriott Oakbrook in Chicago, the IDF Teen & Young Adult Escape is an opportunity for teens ages 13-17 and young adults ages 18-25 to come together and meet others who understand what it’s like to be a young person with PI. The Teen & Young Adult Escape kicks off on Friday, July 22 at 5:30 p.m. with mocktails and a karaoke pizza party and concludes on Sunday, July 24 at 1 p.m.
“I am super excited to finally be attending in-person events and cannot wait to see how many new and old IDF members attend,” said Gott. “I think my favorite part of all these events is being able to connect with others my age who have had similar experiences to me. By having this close-knit community, I no longer feel alone in my diagnosis or my treatment process.”
Themed “Thriving with PI,” the IDF Teen & Young Adults Escape weekend includes a robust agenda centered on the transition from youth to adult, with tracks for teens, young adults, and parents. Discussion topics include:
High school and college preparation
Impact of COVID
While teen sessions will focus more on college, young adults will discuss employment and health insurance. Sprinkled in between the information-filled sessions will be icebreakers and activities that foster camaraderie and encourage relationship-building among the teens and the young adults.
“Since the last two and half years have been extra stressful, we’ll talk about ways to commune and have fun with other kids and learn ways to manage stress,” said Kathryn Steeber, IDF program manager of community outreach.
“We’ll do dance moves and simple exercises and learn ways to be more mindful of your body and stress triggers.”
Gott, who has her sights on attending law school once she graduates from Colby College next year, said she is looking forward to discussing the legal aspects of having a PI diagnosis.
“From ages 18 to 25, this is arguably the time in our lives when we are experiencing the most drastic changes, whether it be moving away from home, having to take control of our medical needs, getting a job, or possibly finding health insurance. With all these changes, I've learned that we need to know what our legal rights are and how we can protect ourselves as citizens who fall under the Americans with Disabilities Act umbrella,” said Gott, president of the Disability Awareness Board at Colby.
Another long-time IDF youth volunteer, Cassie Mummert said that online events and live events each have their own strengths, but that she is looking forward to seeing her friends in person again.
“It’s going to be so much fun to be in one place together and catch up,” said Mummert. “I’m also looking forward to meeting new people and connecting with them. I love sharing my story and helping others.”
Diagnosed with common variable immune deficiency (CVID) at 14 years old, Mummert’s participated in IDF events for eight years, including several Teen Escapes, two IDF National Conferences, IDF Advocacy Day, and Walk for PI. She served on the IDF Teen Council for two years, advocated at the local plasma center near her home in Indiana, and is currently a young adult mentor.
“In-person events are so special because you get to travel and connect with others. You get more of the one-on-one time being in person, so your connection is better. And you get to build friendships and know that you aren't alone,” said Mummert.
The cost for the Teen & Young Adult Escape is $25 per family, which covers the hotel room for Friday and Saturday nights, and meals. Participants must follow IDF COVID-19 Safety Protocols.
A virtual option is available for those unable to attend due to health reasons. Contact Kathryn Steeber at email@example.com for more information.
Register here to reserve your family’s spot in the Teen & Young Adult Escape.