Youth Week celebrates teens and young Adults

IDF recently focused on the needs of teens and young adults in the PI community with its first-ever virtual IDF Youth Week. Held over five evenings starting on August 10, Youth Week allowed young people from across the country time to share their experiences, have some fun playing games, and learn more about topics related to PI, particularly how to manage their diagnosis and transition into life as an adult with PI.

The week included an advocacy workshop, two interactive forums for teens and young adults, one family forum, the launch of a new teen podcast, and a virtual game night.

During the first evening, each of the roughly 30 participants introduced themselves, shared their age and the type of PI they had, and revealed one fun fact about themselves.

“They appreciated it because it was the first interaction they’ve had since COVID,” explained Ashley Ferreira, IDF Program Manager of Outreach and Inclusion.

After a presentation about the immune system from Laura Rohe, a registered nurse and member of the PI community herself, both Rohe and members of the IDF Teen Council including Jessica Goddard and Aidan Walsh, along with Young Adult alumni Emilee Brock, Tate Cooper, Chandis Lilly, and Dustin Palmer answered questions from the participants.

Many questions centered on how to navigate a social life, particularly in college, when a person has a PI. The young adults fielded those inquiries with stories about their own experiences. They suggested talking to their friends about their PI and finding alternative activities to do that fit into their lifestyle.

“The main overarching theme is that their diagnosis does not define them and that’s what the older kids told them,” said Ferreira.

The second evening focused on being an advocate for the PI community at the federal and state levels in government. The youth learned that as advocates they will: share their stories with policy makers; testify at hearings; work with other patient organizations on health access issues; mobilize other members of the PI community; respond to action alerts; and meet with, email, write, and phone officials urging them to take action on issues affecting the PI community. They also were given a primer on how to create a “Faces of IDF” handout, which is a personal profile sheet, to distribute as part of their advocacy efforts.

During the third evening, entitled “Storm Clouds and Rainbows: How to Cope with PI as a Teen or Young Adult,” sponsors Takeda, Horizon, and CSL treated the group to a game night. For CSL’s scavenger hunt, teens combed their houses looking for items like water bottles and toothpaste and raced to be the first person back in the meeting with the item. During a virtual mood board activity, offered by Horizon, participants visually displayed what having a PI meant as they chose images like muscles for strength and people walking to represent a journey. In Takeda’s activity, kids were asked to answer questions like “Do you know your diagnosis?” and “Are you sometimes happy because your PI made you stronger?” using emojis.

“The whole point is that they saw they are a community and they are not alone, they have others with them,” explained Ferreira.

Therapist Becky Wang rounded off the third evening by discussing how young people can plan and achieve their dreams and goals. A poll of the group found a variety of ambitions when it came to careers. President, marine biologist, nurse, doctor, author, poet, and IDF employee represented just a few of their aspirations.

The group also had a loud and clear message when it came to what they would like to share with their parents. “The main thing that they wanted their parents to know is that they are so grateful for everything they’ve done for them,” said Ferreira.

The final forum of Youth Week featured a Q&A session for the group moderated by Brian Rath, a member of the IDF Board of Trustees. Brian shared his experiences of growing up with a PI and how he didn’t allow his diagnosis stop him from achieving his goal of becoming an attorney.

During the Q&A, teens touched on topics including dating and PI, the importance of letting parents give them the freedom to make mistakes, having a good college experience as a person with PI, and being successful in a career.

Overall, the most important aspect of Youth Week proved to be that it allowed the teens a chance to make new friends and re-connect with old ones, particularly at a time when the pandemic poses incredible social challenges for everyone, especially youth.

“They all expressed wanting to do this again, and want to do it often,” said Ferreira.