Finding Strength in Community: My Third XLH Day Experience

For the last three years, I’ve had the absolute privilege of attending XLH Day, hosted by the XLH Network. Each year brings new faces, new knowledge, and new memories, but one thing remains constant — the sense of belonging that fills every corner of the room. What began as an event to learn more about living with X-Linked Hypophosphatemia (XLH) has become something far greater: a celebration of resilience, advocacy, and family.

My XLH Day journey began in Los Angeles, California in 2023, continued in Raleigh, North Carolina in 2024, and this year, brought me to the desert sunshine of Las Vegas, Nevada.

What XLH Day Represents

For those unfamiliar, XLH Day, hosted by the XLH Network, is an annual event designed to connect individuals affected by XLH, their families, and the broader medical community. It’s a space to learn, share, and feel seen. The event combines educational sessions with opportunities to network, laugh, and even dance — blending knowledge with joy in a way that’s truly special.

This year was particularly memorable for me, as my family joined me for the first time. They didn’t want to miss an opportunity to explore Las Vegas together, and I was thrilled they could finally experience the magic of this event that means so much to me.

Arriving in Las Vegas

We flew in on Thursday, giving ourselves a full day to settle before the festivities began. After picking up our rental car, we checked into the Red Rock Resort, a stunning resort just a short drive from the Strip and nestled close to Red Rock Canyon National Park. The resort was beautiful — luxurious yet welcoming — the perfect place to unwind after traveling.

The three-hour time difference and long day of travel left us all exhausted, so we opted for a quiet evening. We grabbed a pizza from one of the restaurants inside the resort, took a little tour to admire the amenities, and then retreated to our rooms. We watched a movie together, winding down and resting up for the days ahead.

A Relaxed Friday Before the Big Day

Friday morning greeted us with warm desert sunshine, and we decided to spend some time by the pool before heading to registration. The Red Rock pool area is expansive — several pools, hot tubs, and a massive central fountain surrounded by palm trees and loungers. It was the kind of place where you could forget time existed.

Feeling refreshed and relaxed, we made our way to registration later in the afternoon and attended an educational session led by Dr. Mark Nunes about the basics of XLH. This session dove into the history of genetics and how specific mutations lead to various outcomes. Even for my family, who aren’t as immersed in the science of XLH, it was fascinating. It’s always powerful to watch them gain a deeper understanding of what living with this condition means.

Afterward, we enjoyed dinner together and took another stroll through the resort. There was a calm sense of anticipation in the air — we all knew Saturday would be a big day.

Saturday: XLH Day 2025

The morning of XLH Day always feels electric — a mix of nerves, excitement, and joy at seeing familiar faces again. We arrived early for breakfast, which was beautifully catered, and then settled in for opening remarks by Susan Faitos, Executive Director of the XLH Network.

Her words set the tone perfectly: gratitude, hope, and celebration of how far the XLH community has come.

Then came the keynote address by Dr. Neena Nizar, President and Founder of the Jansen’s Foundation, an organization dedicated to another ultra-rare disease that she and her two sons live with. I had the honor of meeting Dr. Nizar briefly in Seattle at the ASBMR, and I was eager to hear more of her story.

Dr. Nizar is remarkable — she holds a doctorate in educational leadership, is a professor, motivational speaker, and TEDx presenter. Her story has been featured in People Magazine, The New York Times, The Today Show, and more. Beyond her professional achievements, she serves on the Mayor’s Disability Commission for the State of Nebraska, helping shape policy that promotes accessibility and dignity for all.

As she spoke, I found myself deeply moved. Her words carried not only resilience but conviction — a reminder that advocacy isn’t just about raising awareness; it’s about creating change. Listening to her, I felt inspired, not just as someone living with XLH but as a mother and community member who wants to make a difference.

Morning Sessions: Learning and Sharing

After the keynote, the breakout sessions began. My boys headed off to the kids’ room, where they enjoyed games, crafts, and laughter with new friends, while my husband and I attended the Dental Challenges with XLH session led by Dr. Margaret Maclin.

Though I’ve sat in on similar sessions before, I always walk away learning something new. This time, my focus was about preparing for my boys’ upcoming orthodontic journeys. One important takeaway: orthodontists should wait until dental hygiene is excellent before beginning braces.

We discussed several tools to support good dental care, including:

• HA toothpaste (hydroxyapatite toothpaste): Designed to remineralize and strengthen tooth enamel, helping to prevent cavities and tooth decay — an effective, gentle alternative to fluoride-only pastes.

   

• Plaque disclosing tablets: These help children see the plaque left behind after brushing, making oral hygiene more engaging and visual.

   

• Mouthwash with fluoride: Ideal for nightly use, helping strengthen enamel and protect teeth between brushes.

   

• Xylitol products: Safe for children (7–15 grams daily) and effective in inhibiting bacteria that cause cavities. These come in chewing gum, mints, candies, jams, nut butters, and even protein bars.

   

We also discussed sealants, a protective barrier most dental offices can apply to prevent decay and plaque buildup — something I’ll be looking into for my boys.

Another key point: when orthodontic treatment begins, slower movement of the teeth is essential. It leads to less pain and better outcomes for people with XLH. For those with mild alignment needs, Invisalign can be a great alternative, allowing for easier brushing and maintenance.

For my own dental health, I found the information on periodontal disease and gum recession helpful, as I’ve experienced both. I learned there are even laser treatments available in some areas, which I plan to explore at home.

Managing Pain and Finding Tools for Support

Next, I attended the Chronic Pain in XLH session with Dr. Carolyn Macica — someone I’ve met before and always enjoy hearing from. Her knowledge of physical therapy and pain management is extensive, and while much of this session was review, I learned about a helpful tool: the I Can Cope app.

This app allows users to track symptoms, note pain levels, and monitor patterns — an invaluable resource to bring along to doctor appointments. There’s also an XLH-specific app currently in development, which I’m excited to try when it launches.

Community in Full Color

After the morning sessions, we gathered in the reception area for a group photo — a beautiful, tangible reminder of just how much our community has grown. This year marked the largest attendance ever for XLH Day, and standing shoulder to shoulder with so many incredible people was a moment I’ll never forget.

Lunch was another wonderful experience — delicious food, laughter, and conversation. There’s something so comforting about sharing a meal with people who understand your story before you even begin to tell it.

Afternoon: Wisdom and Advocacy

The afternoon brought one of the sessions I look forward to every year: Ask the Doctors. This open Q&A allows attendees to bring their questions directly to some of the most knowledgeable minds in the field. This year’s panel featured Dr. Meagan Wallace (Director of Metabolic Bone and OI clinic) , Dr. Anthony Portale (Professor of Pediatrics at UCSF School Of Medicine and UCSF Children’s Hospital), and Dr. Peter Tebben (Director of Yale Bone Center and Professor of Medicine and Pediatrics).

While I didn’t ask any questions this particular time, I found it incredibly insightful to listen to others share their experiences and hear the thoughtful responses by professionals. It’s moments like these that make XLH Day so empowering.

Shortly after, I had a special opportunity to participate in filming for a new initiative. The XLH Network, in collaboration with Kyowa Kirin, is developing an online XLH Community Guidebook — a digital resource filled with real stories and practical advice for families navigating the XLH journey.

I was a bit nervous in front of the camera (I usually prefer being behind the lens!), but it was a fun and meaningful experience. I hope my words can help someone feel a little more seen or supported when they find the finished video online.

Women and XLH: “Stuff We Don’t Talk About”

After a quick break — and a much-needed coffee — I attended one of my favorite sessions each year: Women and XLH: Stuff We Don’t Talk About, led by Dr. Susan Starling.

This session always feels like a safe haven. While I won’t share details out of respect for the privacy of those in attendance, I can say it’s a space where women open up about the realities of living with XLH — the physical, emotional, and social challenges we often keep tucked away. It’s healing to know we’re not alone in those conversations.

Closing the Day with Gratitude

As the day came to a close, we all gathered back in the ballroom for the closing session, led by Shannon Sharp and JoBeth Souza. They summarized the highlights of the day and offered heartfelt thanks to everyone who made XLH Day possible — the volunteers, the doctors, the families, and the community members who traveled from near and far.

Then came the fun part: community awards! They recognized the person who had attended the most XLH Days, the youngest and oldest attendees, and the person who traveled the furthest — which was awarded to Shari and I for traveling all the way from Ontario! (Though we later found out that a lovely couple from Alaska was there and probably should have taken that one home!)

After a short break, it was time to celebrate.

Dinner, Dancing, and Connection

We returned to our rooms for a brief rest — a chance to decompress after a long, information-filled day — before getting dressed up for dinner and dancing.

Walking into the ballroom that evening felt like stepping into pure joy. The room was elegant, the tables beautifully set, and the air alive with energy. The live band, Lucky Devils, played an incredible set that had everyone smiling and tapping their feet.

Dinner was a four-course meal, and every dish was delicious. Between courses, awards were presented to recognize the incredible people who dedicate their time, energy, and hearts to the XLH Network.

The rest of the night was a blur of laughter, hugs, and photographs — a tapestry of moments I’ll carry with me for a lifetime. Saying goodbye at the end of the evening was bittersweet, as it always is. Each year, XLH Day ends too soon.

Because XLH Day isn’t just an educational event — it’s a homecoming. It’s a reminder that we’re part of something bigger than ourselves.

The Days That Followed: Exploring Together

After such a full and emotional day, my family decided that we couldn’t possibly fly all the way to Las Vegas and not explore a little more.

Before my friend Shari and her family headed home, we all visited Red Rock Canyon on Sunday afternoon to hike one of my favorite trails — Calico Tanks. It’s a climb that rewards you with a stunning view overlooking the entire city. With four XLHers in our group, reaching the top felt especially rewarding. We were tired, sweaty, and proud — a testament to strength, perseverance, and shared encouragement.

In the days that followed, we played tourists, visiting the Hoover Dam, the Las Vegas Strip, and the Aquarium at Mandalay Bay. But another big highlight was exploring Valley of Fire State Park, just an hour outside the city.

The landscape there was breathtaking — red sandstone formations that seemed to glow under the Nevada sun, ancient petroglyphs carved into rock faces, and trails that wound through canyons and arches. We completed four trails that day, each one revealing new beauty and wonder. It quickly became one of my favorite places on Earth.

By the time we boarded our flight home to Ontario, our legs were sore, our hearts were full, and our memories overflowing.

What XLH Day Truly Means

It’s hard to put into words what XLH Day means to me. It’s more than just education — though that alone is invaluable. It’s a connection. It’s a reminder that we are not defined by our diagnosis, but rather by the way we rise together.

Every handshake, every shared story, every smile exchanged between sessions reminds me that this community is built on resilience, empathy, and hope.

When we come together — when we share our challenges and triumphs — we empower one another. That sense of unity is what makes XLH Day one of my favorite days of the year.

Each year, it offers the chance to see new places, meet new faces, and deepen the bonds with friends who’ve become like family. It’s a reminder that, even in the face of a rare condition, we are never truly alone.

Thank you to Kyowa Kirin for your ongoing support, and to the XLH Network for hosting these incredible events. Your hard work and generosity make XLH Day possible.

As I look back on Las Vegas — the sessions, the laughter, the learning — I’m reminded that community is the greatest medicine of all.

Until next year, XLH Day — thank you for filling my heart once again.