Fall 2023 Newsletter

Dear Members.

As the year comes to a close, we look back at the people and events that made 2023 an amazing year for the Network. There are so many things to celebrate, and so much excitement about what is to come in 2024.

Most importantly, we are grateful for you...our members. Whether you are living with XLH, caring for someone with XLH, part of the medical or academic industry, or a donor; we appreciate your time, energy and support. We hope you have a wonderful holiday season and a great start to the new year!

With gratitude,

Susan Faitos, Executive Director

KID'S CAMP

2024 CALENDARS

XLH kids and families had an amazing time at the very first XLH Camp in July 2023. The kids met others with XLH making lifelong friends, and creating memories that will last a lifetime. During camp the kids drew pictures about their experience at camp or living with XLH. As a fundraiser they framed and auctioned off their artwork at XLH Day 2023 in Los Angeles raising around $1000. Since everyone wasn't able to purchase an original piece of artwork the XLH kids are giving you another opportunity by selling a 2024 XLH Calendar with all their masterpieces. However, supplies are limited and going fast. CLICK THE LINK BELOW TO PURCHASE.

Purchase Calendar

IMPORTANT! PLEASE READ BELOW AND PARTICPATE IN THIS NEW SURVEY!

BE HEARD!

YOUR voice matters!

Kyowa Kirin and The XLH Network are working together on a survey to help support data-based decision making for those impacted by #XLH. It’s open to anyone living with XLH in the U.S. who is 18 or older, or anyone who is a caregiver of a child with XLH. Parents who have XLH and participate themselves can also respond for their children.

Those who complete the entire survey and interview will receive a $100 stipend.

Learn more by clicking the link below, then pressing the "start" button to take the survey.

Participate in Survey

XLH Day in Sunny California

XLH Day in Los Angeles was a huge success! We had over 120 attendees and special guests, and some truly inspiring speakers. Members enjoyed a Friday afternoon social at the beach, and music and dinner Saturday night.

This year we broke it up into different topics during each session, so members had a choice of which speaker would be more meaningful for them. That, along with our small group sessions, provided more educational opportunities than ever before.

Please see our website for more pictures, and mark your calendars for 2024 in Raleigh, North Carolina: October 11 - 13th.

Did you know? The XLH Network has been in operation for 27 years, now serving over 2000 members. Help us continue to grow by donating today.

Donate to the XLH Network

XLH KIDS CAMP 2024

It's time to sign up for Kid's Camp 2024, happening this year from July 30th - August 3rd. Please see our website for more information at:

Kid's Camp

Download for Facebook

Download for Instagram

Raise Awareness on Social Media!

You don't have to wait until June! Raise awareness all year long! Click the links on the left to download your own PDF copy of the XLH Awareness Banner. Available for Facebook and Instagram. Use it to raise awareness or set up a donation for the XLH Network. (note: files will need to be converted to images once downloaded).

On-going Virtual Support Groups

AGING WITH XLH

An ongoing support group for XLHers 45 years and older. Meets on the third Tuesday of each month. Next meeting: 1/23/24

MENS GROUP

For males of all ages living with XLH. Meets quarterly. Next meeting: 3/32/24

SPONTANEOUS PARENTS GROUP

For the parents of children with a spontaneous case of XLH. Meets quarterly. Next meeting: 01/02/24

Check out these new groups for 2024:

WOMEN AND XLH

Open to all women affected by XLH. Meets monthly on the third Monday of each month. First meeting will be 1/15/24

PUP SQUAD

Open to kids ages 5-15 who either have XLH or have a sibling with XLH. Meets quarterly. Click on the link to register.

Resources & More:

(click on the title for more info)

Research: Study for Adults Living with XLH-Related Pain.

Article: Improving Care Pathways for People Living with Rare Bone Diseases.

Article: XLH Matters: Insights and Recommendations to Improve O utcomes for People Living with XLH.

Resources: A few resources from our friends at Global Genes:
Rare Caregivers Guidebook
How to Access and Maintain Social Security Benefits.

Thank you and Farewell (for now)

Chris Younger

Board Member Chris Younger is one of the "originals" having been on the Board since it's inception in 2012. He has reached is term limit and will be stepping down at the end of the year.

Chris has been our behind-the-scenes technologic expert, and was instrumental in getting both or old and our new websites functioning. He also has helped with the male perspective on XLH, being a founding member and leader of our Men's Group.

Most of all, he created a wave of spirt and community by writing and performing the powerful song: "XLH Strong ".

Chris, thank you for your time and dedication. Don't be a stranger. :-)

Oliver Gardiner

Board Member Oliver Gardiner has also been part of the Network Board from the beginning. Living in the U.K., Oliver has been invaluable in bringing the international perspective to our work.

Oliver is the founder of XLH UK, and works tirelessly to advocate for families with XLH in the UK.

Oliver was instrumental in getting the XLH Network to keep up with technology, and his contributions in graphic arts have helped us with our message. He is that quiet voice in the corner that coaxes us to reflect on what we are doing and move us in new directions, which is a priceless gift. He will be missed.

Oliver, thank you for your dedication. Don't forget us on this side of the pond!

WHAT TO LOOK FORWARD TO IN 2024:

This is a small sampling of what we have planned. Watch our website for more, and for specific dates.

February 29th - Rare Disease Day

June - XLH Awareness Month, XLH Awareness Day on Capitol Hill

July - Cross Country Challenge 5 begins. Kid's Camp starts.

October - XLH Day 2024 in Raleigh, North Carolina Oct 11 - 13

Ongoing: Support groups and regional events.

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