Network News

Fall 2022

From our Executive Director:

As I write this newsletter, I am reflecting on all of the individuals who make the Network a success: our volunteers, our board members, our donors, and most importantly - our members. Your enthusiasm and support drives our mission, and your input helps us set meaningful goals. Thank you for that, and know that we always want to hear your suggestions

On a personal note, a bit farther down you will see that we are saying a fond farewell to a couple of our board members. In my role, I work closely with our treasurer, Geoff Edelson. I will miss his support, his guidance, his humor, and his ability to break down a seemingly overwhelming situation into easily manageble pieces. I will also miss Sara Show's strong voice of advocacy and reason. Best of luck to you both, and please hurry back!

Wishing all a very happy and healthy holiday season!

-Susan

Become a Network Champion!

Every Picture Tells a Story...

A story made possible by our Network Champions* - donors who give on a monthly basis to help the Network continue it's mission. Our donors make it possible for us to support and educate families living with XLH, increase awareness among the medical community, and hold regional and national events

This Giving Tuesday, we have set a goal of adding 100 new Champions to our roster between 11/1 and 12/31. By becoming a Network Champion, you not only save the hassle of remembering to donate, you will be recognized as a member of this special group of donors thoughout the length of your monthly committment.

Setting up your monthly donation is easy!

Choose one:

Go to: https://www.donorview.com/xlh-network
Text "623" to 518 990 7899
Scan the QR code.

Nashville Notes

Our first post-pandemic XLH Day was a rousing success! Over 120 attendees made the trek to Nashville for a weekend of connecting, learning, socializing and much more. Drs. Kathryn Dahir and Jill Simmons from Vanderbilt shared new information and research about XLH. Pediatric dentist Dr. Margaret Maclin provided a refreshing new look at XLH and dental issues. Board members Elizabeth Olear and Marian Hart gave an insightful presentation about the effects of XLH across the life span. The Saturday night dinner/gala was quite the celebration with music and dancing set against the Nashville skyline at sunset. Thank you to all that attended, and stay tuned to learn about our plans for 2023.

ELSA

(Ensuring Lasting Smiles Act)

Families living with XLH often experience the challenge of paying for expensive dental work to maintain a healthy bite and smile. ELSA is a bill going through Congress that can help alleviate this. This bipartisan legislation requires all private, group, and individual health plans to cover medically necessary services that are needed to repair congenital anomalies; stipulates that such coverage include services & procedures that functionally repair or restore any missing or abnormal body part that is medically necessary to achieve normal body functioning or appearance; and clarify the inclusion of adjunctive dental, orthodontic, or prosthodontic support.

We only have until the end of the year to get this passed, or we start all over again in 2023. PLEASE take a moment to click HERE to see how you can help this bill go through in 2022!

Online Groups

Our online support groups are going strong! There is a group available for anyone but if we are missing a category plese let us know. Groups are normally held Wednesday evenings from 8:00 - 9:30 PM ET Watch our social media pages for updates.

Men's Group: open to all males living with XLH. Led by board members Geoff Edelson, Chris Younger and Jason Grant.
Spontaneous Parents: open to parents with a child who has a spontaneous case of XLH. Led by board members JoBeth Souza and Shannon Sharp.
Aging with XLH: open to all dealing with the effects of XLH after 45(ish). Led by executive director Susan Faitos and board member Kelly Rushing.
Transition Age Group: open to teens and young adults. Led by board members Marian Hart and Sarah Das.

For more information on any of thse groups, feel free to email executivedirector@xlhnetwork.org

There are two more online support groups in 2022! The Men's Group will meet 12/7 and the Aging with XLH Group will meet 12/14. Click on the picture below to register.

In Gratitude

We are fortunate to have dedicated and committed board members at the Network. Which makes it difficult to say goodbye when one or more steps off. This year we are saying "see you later" to Sara Show and Geoff Edelson.

Sara has been on the board since 2018, and has brought a strong voice for advocacy to the table, as well as her wealth of knowledge from her legal background.She was the original leader of the Spontaneous Parents group and will continue in her role as a member of the Community Congress for the EveryLife Foundation, respresenting the Network. We thank her for her service and time, and wish her well in all future endeavors.

Geoff is one of the original board members, having served for over 10 years. As treasurer for his last three terms, he has kept us on track with budgeting, fundraising, and more importantly, being responsible with how we use our donations. Geoff can always be counted on to help out at events, and carries with him a wealth of knowledge about the history of the Network. He will be missed for his guidance, his compassion, and his sharp wit. Thank you, Geoff - for all you have done for the Network and for the XLH community.

Meet Our New Board Members

Charles Pomeroy

Charles is one of the original members of the Network, having been involved in the creation of the very first XLH Day. He can be counted on to help out at any event, often playing many roles at once. We are looking forward to utilizing his expertise in technology. Charles resides in Connecticut with his wife, Ilona and his daughter, Grey.

Kelly Rushing

Kelly is a familiar face at Network events, and is our most dedicated volunteer. She was instrumental in developing our plans for Nashville, and she co-leads the Aging with XLH group. Kelly brings creativity, humor and a fierce compassion for the community with her. Kelly resides in Alabama with her husband Ricky.

What to watch for in 2023

New & Improved Website
New Dates for Cross Country Challenge:
July 4th - Labor Day
Kid's Camp
XLH Day in the Fall
Regional Get-Togethers

Our work is made possible by donations from the community. Please consider contributing.

Donate Now

xlhnetwork.org

In this Issue:

Become a Network Champion!

In Gratitude

What to watch for in 2023