XP Family Support Group

🚨 Survey Link for Conference Information 🚨

We sent out a survey via email to families attending the conference, some have gone to the spam folder and some have not received it. So we’ve made it even easier to complete your registration details! Instead of checking your email, you can now **directly access the survey** by clicking the link below.

Your timely response helps us finalize preparations for a safe and enjoyable event at the **Great Wolf Lodge in Scottsdale** from **November 8-11**.

If you have any questions, feel free to send us a message. We look forward to seeing you all soon!

XPFSG 2024 Medical Conference Information | Cognito Forms

📢 **Attention XP Conference Attendees!** 📢

We’re so excited to see you at the upcoming XP Family Support Group Medical Conference and Kids Camp! To help us plan and make sure everything runs smoothly, we need your help. 🙌

If you're registered to attend, please take a moment to **fill out the survey** in the email we sent you. We’re gathering important details about who’s attending so we can prepare accordingly for the event.

📅 **Please fill out the survey by tomorrow 10/3 at 5:00 PM PST** so we can finalize our plans.

This information helps us ensure a great experience for everyone, so we’d appreciate it if you could complete the survey as soon as possible. 💌

If you have any questions or didn’t receive the email, feel free to message us!

Thank you! We can’t wait to see you in November! 🌟

🌟 Join Us in Transforming Lives at the XP Medical Conference & Firefly Camp! 🌟

The XP Family Support Group is hosting our bi-annual Medical Conference and Firefly Camp from November 8-11 at the Great Wolf Lodge in Scottsdale, where we’ll provide support, education, and unforgettable experiences for families affected by Xeroderma Pigmentosum (XP). 🌙✨

We’re reaching out to our incredible community for sponsorships to make this event as impactful as possible for kids who cannot be exposed to sunlight or UV light. Your generosity helps us provide a safe, fun, and educational environment for these families.

🌟 Your support makes a world of difference! 🌟

For more information or to become a sponsor please visit our website or contact Johanna Sweet 252-649-8865.

Let’s make this year’s conference one to remember! 💙

🎉 XP Family Support Group - Annual Technology Raffle! 🎉

📅 Drawing Date: November 10, 2024
🎟️ Ticket Price: $5 each or 5 for $20
💡 How it Works:
If your ticket is pulled, you pick your prize! The first winner gets the first pick, and the remaining winners select from the remaining prizes.

🏆 Prizes include:
Ninja Creami
iRobot Roomba Combo i3 Vacuum and Mop
Amazon Echo Spot
Karaoke Machine
AirPod Max Headphones
$100 Amazon Gift Card
Portable Bluetooth Speaker with HD Sound
Hiboy S2 Electric Scooter

👉 Get your tickets now and support the XP Family Support Group!

💬 Get your tickets from an XP Family or from our website!

Thank you for your support! 💙

Final Call: Only 3 Days Left to Register for the 2024 XP Conference!

Time is running out! There are only 3 days left to register for the 2024 XP Family Support Group Conference. This is your last chance to register to join us for an incredible event filled with expert talks, workshops, and community connections. Registration closes on 15 September 2024, so be sure to secure your spot before it's too late!

📅 Join Us for the Toast for Hope Fundraising Event in Whitewater, Kansas! 🍷

We’re excited to invite you to our Toast for Hope event on Saturday, November 16, 2024, from 6:00 PM to 9:00 PM at Grace Hill Winery in Whitewater, Kansas!

Enjoy a wonderful evening featuring:
Silent & Live Auctions 🎁
Games & Raffle Prizes 🎉
Delicious Wine Tastings 🍷

All proceeds will benefit the XP Family Support Group, helping to improve the lives of those with Xeroderma Pigmentosum (XP) through research, education, and support.

Check out the flyer for more details, and visit our website to learn how you can participate. We hope to see you there!

Thank you for your continued support! 💙

As we plan our upcoming XP Conference, we want to hear from YOU! What topics would you like to see covered? Are there specific sessions that would be most beneficial for you and your family?

Whether it's medical advancements, daily living tips, emotional support, or anything else, let us know in the comments below! Your feedback will help us create an event that meets the needs and interests of our amazing XP community.

Let's make this conference the best one yet! 💙✨

🎉 *Website is Fixed! Conference Registration Update*🎉

Dear XP Family,

Our website issues have been resolved, and conference registration is now open! Please note the following important details:

✨XP Patients are Free**: During checkout, fill in the name of your XP patient in the designated slot. This ensures they are registered at no cost.

✨Children Over 2 Years**: Kids over the age of two count as a person and will need to pay the $199 fee.

✨Adult XP Patients Attending Alone**: Adult XP patients coming alone must pay the registration fee.

✨The $100 non-refundable registration fee is per family.

As always, if you have any questions please reach out for assistance.

Thank you for your patience and understanding. We look forward to seeing you at the conference!

Best regards,
The XP Family Support Group Team

📢 **Reminder: XP Family Conference Registration Fee**

Attention XP Family Support Group members! If you are planning to attend our upcoming conference, please remember to include the $100 registration fee per family. This fee is non refundable and is required and must be added to your cart during the registration process.

✅ **Action Required:**
1. Go to the conference registration page.
2. Add the $100 Registration Fee to your cart.
3. Complete your conference registration purchase, ensuring the deposit is included with your order.

Thank you for your cooperation and support. We look forward to seeing you at the conference!

📣 Reminder: XP Medical Conference Registration Closing Soon! 📅

Our XP Medical Conference is just around the corner, and we can't wait to see everyone there! Don't miss out on this incredible opportunity to connect, learn, and support one another. 🧡

🗓️ **Conference Date:** November 8-10
📍 **Location:** Great Wolf Lodge, Scottsdale, Arizona

🔔 **Last Day to Register:** September 15, 2024

Join us for a weekend filled with insightful talks, workshops, and community activities designed to enhance the quality of life for those with XP and other UV light conditions. Whether you're a family member, caregiver, or someone living with XP, there's something valuable for everyone.

Register today and be part of this empowering event. Let's make a difference together! 💪

🔗register on our website! xpfamilysupport . org

🌟 Countdown Alert! 🌟

Only 102 days until our XP Family Support Group Conference at the Great Wolf Lodge in Scottsdale, AZ, starting November 8th! 🎉

We can't wait to see everyone and enjoy the 100% UV-safe indoor water park 🌊 — a perfect place for our XP community to relax and have fun!

What are you most excited about for the conference?

Let us know in the comments! 🐺🏞️

🌟Patient Spotlight: Dawson🌟

Meet Dawson, a spirited 13-year-old with Xeroderma Pigmentosum (XP) D. Dawson is full of energy and loves shooting hoops and working out. Despite the challenges that XP brings, especially with the sun being his biggest weakness, Dawson stays active and positive.

His passion for basketball and fitness is truly inspiring, showing us all that nothing can dim his shine. Keep reaching for the stars, Dawson! 🏀✨

🎉 Happy Birthday to the Americans with Disabilities Act (ADA)! 🎉

Today, we celebrate 34 years of empowering individuals with disabilities. The ADA has been crucial in ensuring accessibility, inclusion, and equal opportunities for all.

At the XP Family Support Group, we’re grateful for the ADA’s impact on our community, including those with Xeroderma Pigmentosum. It has helped create a more accessible and inclusive world, providing essential protections and accommodations.

Join us in celebrating this milestone by sharing your stories and experiences. Together, we can continue to advocate for a brighter, more inclusive future! 🌟💙

Exciting News to Share!

Join us for the 2024 XPFSG International Medical Conference in Phoenix, Arizona!

Dates: November 8th-10th, 2024
Cost: $199 per person (XP Patients attend for free)
Deposit: $100 non-refundable

Your registration includes accommodations for Friday, Saturday, and Sunday, engaging activities, and most meals. Plus, enjoy discounted rates for additional nights at the Great Wolf Lodge in Scottsdale, AZ.

Secure your spot now and be part of this incredible event dedicated to the XP community. For more details please visit our website!

Let's come together to support and learn from each other!

This month’s XP Spotlight is Paxton Feltner!

Meet Paxton! At 20 years old, Paxton embraces life with a spirit that defies the limits of XP! With a love for longboarding, snowboarding, gymnastics, and hitting the gym, he is a testament to living life to its fullest, despite the challenges of XP!

Strength & Challenges: Paxton finds strength in connecting with others through his experiences with XP, pushing its boundaries. Yet, he acknowledges the challenge in bringing the necessary attention to the condition.

Proudest Achievements: Serving a full-time mission for the Church of Jesus Christ of Latter-Day Saints stands out as Paxton's most cherished accomplishment, showcasing his determination and commitment.

A Message from Paxton: "Facing XP with fear is easy, but living with it reveals our true capabilities and potential. Focus on what you CAN do, not what you CAN'T, to uncover your full potential."

Paxtons journey is a beacon of hope to the XP Community. Let's celebrate his achievements and the positive outlook he brings to life. 💪🏼🛹

The March XP Patient Spotlight is Oliver Kei!

Meet Oliver, a remarkable 13-year-old patient from Southern California Despite the challenges with XP, Oliver embraces life with a unique blend of enthusiasm, innovation, and humor.

Hobbies: Oliver thrives in the digital realm- from conquering video games to exploring virtual worlds with his Oculus. But what sets him apart is his creative knack for creating hilarious memes for his science teacher and his passion for building things.

Strength in Vulnerability: While Oliver admits that XP saddens him at times, especially when it limits his outdoor activities, it has also given him a profound understanding and empathy for others facing rare conditions.

Shining Achievements: As a 7th grader at Joe Walker Middle School, Oliver significantly contributed to his VEX Robotics Team, 4073G, reaching the State Championship. Together with his teacher, Mr. Anderson, he is also working on a revolutionary project to create a better hood for XP Patient!

A Message from Oliver: "Even with XP, that doesn't stop you from succeeding in life. You can do many things with XP! Stay safe and keep going forward!"

Let's Applaud Oliver for his achievements, resilience, and bright path he is paving. Your Story, Oliver, is a beacon of hope and innovation. Keep shining bright! ✨

Hey XP Family! We are launching a Monthly XP Patient Spotlight to celebrate our community's stories. Whether you are a newcomer or a seasoned warrior, we want to hear from you!

Share your journey and inspire others by filling out this form and maybe you will see yourself on our page! Let's shine together to raise awareness about XP.

XP is a different experience for everyone, be the inspiration someone needs. 💖

XP Patient Spotlight Please click the link to complete this form.

🌎 Today is Rare Disease Day!🌎

At the XP Family Support Group, we stand united with the global rare disease community to raise awareness and advocate for those living with Xeroderma Pigmentosum (XP). On this special day, we want to shine a spotlight on XP and the incredible individuals who navigate its challenges with strength and resilience.

Today, we celebrate the XP warriors, their families, and the dedicated healthcare professionals who support them. We recognize the daily battles patients face and the triumphs they achieve. We also extend our gratitude to the researchers who tirelessly work toward a better understanding of XP!

Together, we can navigatete this journey, share knowledge, and empower one another. On this Rare Disease Day, let’s raise awareness about XP. Let’s all educate others about the challenges faced by the XP community and the importance of early diagnosis, access to care, and ongoing research. Together we can make a difference and create a brighter future for those affectedted with XP.

Here is our latest newsletter.

February Newsletter A newsletter from the Xeroderma Pigmentosum Family Support Group, a registered non-profit organization dedicated to helping those touched by the rare genetic condition through education, research and kindness.

Game Day Recipe! 100% of proceeds from Grandpa’s BBQ sauce goes to help families with XP.
www.grandpasbbqshop.com
Recipe:
2 packages sausage
1 cup Grandpas BBQ Sauce
1/4 cup packed brown sugar
1 tablespoon Dijon mustard

The XP Family Support Group board meeting to plan our 2024 Medical conference and annual budget. Ready for a great 2024!!

A gentle reminder that XP is not something to make jokes about. It’s a serious disorder that alters your life. Everyone is going through their own battles. Let’s be kind! You never know whose life you can touch with a little kindness. 💙

Congratulations to the winners of the 2023 XP family support group technology raffle!!
1st place: Cindy Cassinat - $100 Amazon gift card
2nd place: Gail Berhndt- Roborock vacuum
3rd place: Zach Jensen - AirPod Max
4th place: Mandy Olsen - Ninebot scooter
5th place: Liam Feltner - Fangor projector
6th place: Becky Elias - Samsung sound bar system
7th place: Jenni Gutierrez - JBL Bluetooth speaker

Watch your email inbox for the latest copy of the XPFSG Night Times Newsletter!