XP Family Support Group

💡 Help Us Plan the XP Conference!

As we work on the schedule for the conference, we want to hear from you!

What topics would you like covered?

Examples might include:
• Research updates
• Skin care & prevention
• Neurological symptoms
• Daily living tips
• School support
• Adult XP care

Drop your ideas in the comments below 👇 so we can try to focus on what matters most to our community.

Your input helps shape the conference! 💙

🎉 Exciting News! 🎉

We’re thrilled to announce that our 2026 Conference will be held at the Mall of America in Minneapolis, MN from November 6–8, 2026! 🏨✨

Get ready for an incredible weekend of connection, learning, and fun at one of the most iconic destinations in the country.

🗓 Mark your calendars now!
📝 Registration will be opening soon.

Be sure to follow along for updates on when and where to register—we can’t wait to share more details with you!

💛 Opportunity for ONE Family – Camp Dermadillo Family Camp (Texas) 💛

The XP Family Support Group has the opportunity to nominate ONE family to attend Camp Dermadillo Family Camp in Burton, TX from February 13–16, 2026 (President’s Day weekend).

This experience is for a family with an affected school-aged child (ages 7–14). The selected family will enjoy a weekend of connection, fun, and community, and will also participate in sharing their story through photos and video as part of a meaningful traveling exhibition.

✨ What’s covered:
✔️ All meals
✔️ Lodging
✔️ Activities
✔️ Fully accessible, barrier-free camp

🚗 What’s not covered:
• Travel to/from camp

📅 Important commitment:
Families must be able to attend ALL sessions, starting Friday, February 13 at 6:00 PM and ending Monday, February 16 at 9:00 AM.

👉 How to apply:
Please DIRECTLY MESSAGE the XP Family Support Group if your family is interested.

⚠️ Only ONE family can be nominated.
If more than one family reaches out, the family will be selected by random draw.

⏰ Deadline to message us: Wednesday, January 7

If this opportunity feels like a good fit for your family, please don’t hesitate to reach out 💛
Feel free to share this post with families who may be in

✨ Happy Holidays from the XP Family Support Group ✨

As we move through the holiday season, we want to send love, light, and strength to every XP family in our community—no matter how or what you celebrate.

We are grateful for this community and the support, knowledge, and connection shared here every day. Thank you for showing up for one another and for being part of the XP family.

Wishing you peace, comfort, and brighter days ahead. 💙

With love,
XP Family Support Group

If we could get some more patients and families to fill this out, that would be wonderful!! Thank you!

🧴☀️ Do You Use UV Protective Window Film?
Researchers at University Hospitals Department of Dermatology want to hear from YOU!

They’re conducting a brief 5-minute survey to better understand the awareness and use of UV protective film among individuals with photosensitive conditions (like XP) and those with occupational sun exposure.

✅ You qualify if you’re between 18–89 years old (Parents please fill out for children under the age of 18)
🕐 Takes just 5 minutes
🔗 https://redcap.uhhospitals.org/redcap/surveys/?s=DDD47MCLD3XWDEKF&group=3

Your participation can help improve sun safety awareness and future research!

If you have questions, contact Claire Reynolds at [email protected] or 603-809-3999.

Please share with friends, family, and community members who might qualify!