The XLH Network, Inc., 911 Central Avenue, # 161, Albany, NY (2026)

01/05/2026

Have you seen our End of Year Newsletter? Read what to look forward to in 2026!https://xlhnetwork.org/wp-content/uploads/2026/01/The-XLH-Network-INC.-5.pdf

01/02/2026

Hey Pup Squad Kids!
Come pop into the New Year with your friends at our Pup Squad Meeting!

📅 January 11, 2026
⏰ 3:00 PM ET

Get ready for fun, laughs, and hanging out with kids who get it

Register here: https://zoom.us/meeting/register/PdYjOu1dRa2o8EwqhhUruA

01/01/2026

Happy New Year, XLH community!

A new year brings new opportunities to learn, connect, and continue building a stronger future for everyone impacted by XLH. Thank you for being part of this incredible family and for all you do to support, advocate, and care for one another. We can’t wait to see what we accomplish together in the year ahead.

12/31/2025

Navigating insurance and financial assistance with XLH can feel overwhelming—but support is available. Understanding your insurance plan can make a big difference in the year ahead.

In February 2026, the XLH Network will host “What You Need to Know About Insurance and Financial Assistance Programs.”

We want to hear from you.
💬 What questions do you have about insurance, The Assistance Fund, or Kyowa Kirin Cares?

Share below or email us privately at Shannon.Sharp@XLHNetwork.org

This session will be designed with your needs in mind. 💜

12/24/2025

Thank You, Indima Foundation!

We are thrilled to welcome the Indima Foundation as a partner in supporting the XLH community!

The President of the Indima Foundation is a spontaneous XLHer and mother to two sons with XLH. Their family’s personal connection gives them a deep understanding of the challenges and joys of living with XLH, and a strong commitment to raising awareness, providing resources, and supporting families affected by this rare condition.

Through their generous donation, the Indima Foundation is helping the XLH Network continue offering programs, events, and community connections that make a real difference in the lives of XLH families.

Please join us in celebrating this incredible partnership and thanking the Indima Foundation for their dedication to our community. Together, we can shine a brighter light for all those living with XLH.

12/22/2025

As we head into this week, we'd like to take a moment to thank all of you for being a part of this year. Whether you've attended an event, reached out to us, donated, or are just reading our social media, we are grateful you are here. Wishing you all a very healthy and happy holiday season!

12/19/2025

Every voice raised, every story shared, and every policy conversation started begins with someone choosing to advocate.

Meet Macy Brown—an adult living with X-Linked Hypophosphatemia (XLH) whose courage and voice are helping drive meaningful change for the rare disease community.

“After attending Rare Disease Week on Capitol Hill, I learned just how powerful advocacy can be when people come together with a shared purpose. Hearing personal stories—stories like mine—showed me how deeply rare diseases impact our lives, and how important it is for lawmakers to hear directly from us.”
— Macy

Macy attended Rare Disease Week on Capitol Hill, where she witnessed firsthand how sharing lived experiences can influence policy discussions and funding priorities. Through conversations with fellow advocates and lawmakers, she gained a renewed sense of connection and hope—realizing that even small conversations can lead to meaningful change for millions affected by rare diseases.

Born with XLH, Macy has faced a lifetime of medical challenges. As a child, she lived with bowed legs, constant bone and tooth pain, and spent significant time in hospitals, including undergoing corrective leg surgery. Over the years, XLH has also contributed to additional health complications, including hydrocephalus, Chiari malformation, spinal stenosis, tooth loss, and multiple surgeries.

Today, Macy lives in Maryland, where she was raised. She is married, the proud mother of three children, a son-in-law, and a loving grandmother. She shares her story to raise awareness about XLH and to advocate for better medical and dental coverage—so others living with this rare disease don’t have to fight alone.

Because of advocates like Macy, the XLH community’s voices are being heard—louder and stronger than ever before.

When you support the XLH Network, you help:
✦ Amplify patient voices in advocacy spaces like Capitol Hill
✦ Raise awareness about the real-life impact of XLH
✦ Push for improved access to medical and dental care
✦ Build connection, hope, and empowerment across the XLH community

Your support turns personal stories into collective action—and action into lasting change.

✨ Make a donation today and support advocacy efforts like Macy’s:
https://conta.cc/4pcOz7m

Thank you for helping support the XLH community. Together, we are shaping a future where every person living with XLH is heard, supported, and valued.

12/17/2025

Giving Back Made Easy 💙 Support The XLH Network through Walmart Spark Good

We’re excited to share a simple way to give back to The XLH Network while you shop on Walmart.com through Spark Good.

✨ Two easy ways to support our community:
1️⃣ Round up your change at checkout on Walmart.com and donate the difference to The XLH Network.
2️⃣ Donate products directly from The XLH Network’s registry and have items shipped straight to us to support our programs and families.

🛒 How to sign up:
✔ Sign in to your Walmart account
✔ Click on Account
✔ Under My Profile, select Giving & Impact
✔ Search for The XLH Network on Walmart Spark Good
✔ Choose us as your preferred nonprofit
✔ Turn on Round Up or donate items from our registry

Every dollar and every item helps us connect, educate, and support individuals and families living with XLH. Thank you for making a meaningful impact with every purchase 💙

12/15/2025

Sharing some more photos from fabulous XLH Day in Vegas. Have you saved the date yet for Indianapolis? October 2nd!

12/12/2025

Every connection made, every friendship strengthened, and every moment of laughter during Pup Squad calls begins with someone choosing to give.

Meet Rebecca—a spontaneous XLHer whose involvement in the Pup Squad shines a light on the power of community your generosity makes possible.

“After attending CCK for the first time, I was so glad we came here because I finally met people like me!”
— Rebecca

For the past three years, Rebecca and her family have attended XLH Camp at CCK, an experience that opened the door to friendships across the U.S. and Canada. After the very first XLH Summer Camp, the Pup Squad was created specifically to help kids stay connected and to build and strengthen the relationships they formed at camp. For Rebecca, that mission has become a meaningful part of her XLH journey. She loves catching up with her camp friends on Pup calls and staying connected to a community that truly understands her.

This small but mighty warrior recently earned her junior black belt in karate, plays softball, is active in Girl Scouts, and performs in both school chorus and on the trumpet. Her spirit, strength, and kindness brighten every Pup Squad gathering.

Because of donors like you, kids like Rebecca are able to build friendships, find support, and discover the confidence that comes from being surrounded by others who “get it.”

When you give, you help fund programs that:
✦ Create safe, joyful spaces like the Pup Squad where kids connect and feel understood
✦ Support educational, community, and family resources for those living with XLH
✦ Ensure no child affected by XLH has to navigate this rare condition alone

Your gift helps turn connection into confidence—and confidence into lifelong impact.

✨ Make a one-time gift today or monthly gifts to help more kids experience the friendship and support of the Pup Squad.
https://conta.cc/4pcOz7m

Together, we’re building a future where every XLH child is seen, celebrated, and supported.

12/10/2025

👩‍🔬🧬 You’ve met the XLH Network Scientific Advisory Board (SAB)… now it’s your turn!

What burning questions do you have about XLH? 🔍💭

⚠️ Quick reminder: They can’t give medical advice, but they can answer general XLH questions!

Questions will be shared with the SAB, and they’ll pick which ones to answer in our Ask the SAB Series on social media.

Drop your questions below or if you’d prefer, you’re welcome to email your questions to Shannon.sharp@xlhnetwork.org—we can’t wait to see what you’re curious about! 👇✨

12/05/2025

Every connection made, every family supported, and every moment of joy at XLH Camp begins with someone choosing to give.

Meet the Lephew family—first-time XLH Camp attendees whose experience reflects the heart of what your generosity makes possible.

“XLH Camp was an amazing opportunity for our family to connect with others that deal with the same struggles. Events like this are a beautiful way to have fun, while also finding a community of people that quickly become family.”
— Kaylen Lephew

The Lephews’ story is one shared by many in our community. Joey and Kaylen are parents to four incredible girls living with XLH—Alexa, Ember, Elara, and Athea. Joey inherited XLH from his mom, and several uncles and cousins are also affected. Their family loves being outdoors, spending time with their dogs Ciri and Syl, and cheering on their girls as they shine—whether it’s Alexa earning her yellow belt in karate or Ember excelling on the softball field. And truly, all four girls light up any room they enter.

Because of donors like you, families like the Lephews are able to experience the power of connection, understanding, and joy at XLH Camp. Your support helps create spaces where children and parents meet others who “get it,” forming friendships that last long after camp ends.

When you give, you help fund programs that:
✦ Bring XLH families together for community-building events like XLH Camp
✦ Support education, advocacy, and resources that guide families through their XLH journeys
✦ Ensure no one affected by XLH has to navigate this rare condition alone

Your gift turns support into community—and community into lifelong impact.

✨ Make a one-time gift today and help more families experience the magic of XLH Camp.
https://conta.cc/4pcOz7m

Together, we’re building a future where every XLH family is seen, heard, and supported.

The XLH Network, Inc.