XLH Day & Symposium October 4-7, 2018

An official message about XLH Day from the Founder and Chair of XLH Day 2018 Elizabeth Olear: 

This year we are combining XLH Day with a Symposium focused on the adult symptoms and complications of the disease for the FDA. In the coming days and weeks we will be providing complete information about the events of "XLH Weekend." 

What I can share today is that the venue for both the Symposium and XLH Day is the Hyatt Regency Baltimore Inner Harbor. https://www.hyatt.com/en-US/hotel/maryland/hyatt-regency-baltimore-inner-harbor/bwirb

Guest Rooms have been negotiated to start at $129/night. If you would like to reserve your guest room ahead of the official release of the block, please send an email to: elizabeth.olear@xlhnetwork.org 

We are looking forward to seeing you in Baltimore! Please check back here and at the OFFICIAL XLH NETWORK FACEBOOK page for the ONLY places where accurate and up-to-date info will be posted. 

Physical therapy videos

Have you ever had to try to explain to a physical therapist that there are some exercises you just can't do, no matter how hard you try, because your bones and muscles simply won't move that way?

We've got some instructional videos from a physical therapist who has worked with XLH patients before. Dr. Keith Steigbigl, PT, DPT, CSC, did a workshop on physical therapy for the 2017 XLH Day, and since that workshop wasn't recorded, he graciously arranged to record his recommended exercises separately, so everyone who couldn't attend the event can benefit from his advice. We're grateful to him and to Melissa Templeton, a student at Quinnipiac University's Frank Netter School of Medicine, who performed the exercises.

You can see all four videos at our youtube channel: https://www.youtube.com/channel/UCOCxS6CV6NeNxoFFivOyNpg

As always, be sure to check with your health care provider before starting an exercise program!

Save the date: XLH Day 2018!

This year's XLH Day on Columbus Day weekend (October 5-7) in the Baltimore/Washington, DC area is going to be bigger and better than ever!

We're adding a one-day pre-event called "Symposium on Hypophosphatemia: past, present and future," which will focus on the experiences and challenges for adults living with XLH and related hypophosphatemias, including the autosomal versions and Tumor Induced Osteomalacia. It's an opportunity to discuss these issues in a structured environment, with representatives of the medical community and the U.S. Food & Drug Administration in the audience. The event will be videotaped and transcribed for sharing with the FDA and the medical community (including your clinicians!).

To read more about events like this (which in government-speak are called externally-led Patient Focused Drug Development meetings, or PFDDs), check out this site (and don't be intimidated by all the jargon): https://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm453856.htm

We'll have lots more information for you over the coming months, but for now, we're hoping you'll put the dates on your calendar and start making plans to attend. It's going to be fabulous, and we want you to be part of it.

XLH Day Registraton is Closed

XLH Day Registration is now closed. Attendees will receive an email in the next two weeks with last-minute information about the event.

Final reminder for XLH Day

This is it -- just one more day to register for XLH Day at xlhday.org. Registration closes at midnight Eastern time on Sunday, September 17th.

Last chance to register for XLH Day

Registration for XLH Day closes this coming Sunday, and you won't want to miss it! Register now at xlhday.org

We'll be making some big announcements during XLH Day, with opportunities for you to make your voice heard in the medical and regulatory communities about the needs of XLHers and their families. We'll also be launching our book, Weak Bones, Strong Wills, the Stories of XLH, so attendees can be among the first to get a copy! Some of the contributors to the book will be attending, so you can even get it autographed if you wish.

We've already got more people registered than for any previous XLH Day, and more educational sessions are scheduled than ever before. The morning workshops cover physical therapy, dental issues, education plans, genetic counseling and othopedic foot care. The afternoon will be more focused on new treatment possibilities and a general Q&A session where you'll be able to ask the experts general questions about XLH.

Don't think it will be all work and no play, making XLHers dull! We've incorporated some fun events, like a game to test your knowledge of XLH, and we've built in lots of time for you to get to know other members of the XLH community on Friday and Saturday evenings. There will also be additional social opportunities on Sunday morning during the 5K walk/run event.

Most of the Network's board and staff will be at the event, and we hope to meet as many members of  the XLH community as possible on October 6-8. See you then!

XLH Day reminder

Can't decide whether to come to XLH Day this year? Perhaps some pictures from last year's event will help. You can see them at our facebook page here:

https://www.facebook.com/pg/xlhnetwork/photos/?tab=album&album_id=1694121750601010

Meanwhile, there's only three weeks left to register here: http://xlhday.org/

And if you've already registered but haven't made your hotel reservation, please make it now. The special reduced rate is only guaranteed through September 5th (ten days before the event registration closes).

When making reservations by telephone, request the XLH Day group rate. For online booking, use this link and reference the XLH Day block:

http://book.bestwestern.com/bestwestern/groupSearch.do?groupId=N43JP9A6

Alternatively, call the front desk at (203)239-6700 and reference the XLH Day block.

Reservations may be cancelled without penalty up to October 4, 2017.

Thanks to the generosity of an anonymous donor, the Network has funds available for a limited number of stipends for reimbursements of the hotel cost, and they will be awarded based on financial need. If you would like to be considered for this reimbursement, please send an email to ExecutiveDirector@XLHNetwork.org, indicating that you would be financially unable to attend without a stipend and which night(s) you plan to stay (Friday and/or Saturday). Note that to be eligible for reimbursement, you must be a member of the Network, and the name on the hotel registration must be the same as the name on the event registration. For those seeking reimbursement of the hotel cost, you will be notified no later than September 12, 2017, whether you have been approved for reimbursement and the amount of the stipend. Details of the reimbursement procedure will also be provided at that time. Even if you will be reimbursed for the hotel cost, you must make your own hotel reservation and provide a credit card to cover any incidental expenses (e.g., room service).

XLH Day Registration is Open!

XLH Day Registration is open at XLHDay.org. We think you'll be as excited as we are with everything we've got planned, from panel discussions to interactive discussions, a children's program, and even a picnic dinner at a local state park. You can see the list of speakers and the preliminary agenda here: http://xlhday.com/?page_id=1071

Before registering, please read the information about hotel accommodations here http://xlhday.com/?page_id=220  We don't have a grant to cover hotel costs for everyone this year, so the stipends will be granted on the basis of need. We understand the financial burdens of living with a rare disease, and we will do our best to accommodate everyone who could not attend without the financial assistance. For your own planning purposes and for ours, we encourage anyone who does need the help to apply for the stipend as early as possible in the registration period by contacting our Executive Director, Carol LaFleur at ExecutiveDirector@xlhnetwork.org

If you know anyone else with an XLHer in the family, please make sure they know about XLH Day. We don't want anyone to miss out on such a great experience!

Weak Bones, Strong Wills!

Our book of the XLH community's experiences with the condition, Weak Bones, Strong Wills, the Stories of XLH has been compiled and edited, and now is going through a final proofreading. We think you'll find the stories inspiring, and you'll recognize many of the experiences from your own life or a family member's life.

We're on schedule to have paper copies available for purchase and autographing during XLH Day, and both digital and paper copies will be available then from online retailers like Amazon.com, BN.com, and Kobo.com. We'll share the links as soon as they're available.

Meanwhile, you can see a rough mock-up of the cover art (still a work in progress) at our official facebook page, https://www.facebook.com/xlhnetwork/?ref=bookmarks

Thanks to everyone who submitted a story!

XLH Day registration to begin July 9

It's almost time to register for XLH Day, which will be held on October 6-7 at Quinnipiac University's Frank H Netter MD School of Medicine in North Haven, Connecticut. We expect the registration site toopen July 9th and close September 16. Please don't try to register before we announce it's open; early registrations will be deleted during testing.

Meanwhile, we're sharing the graphic for this year's event, which you can see at our official facebook page, facebook.com/xlhnetwork. Make sure you're following us there, so you get the most recent news and information.

The graphic merges aspects of the XLH disease process with a Connecticut legend. Hidden in plain sight as the trunk of a Charter Oak tree are leg bones with the varus deformity common to many XLHers.

The legend of the Charter Oak started when King Charles II granted the Connecticut Colony its charter in 1662. His successor consolidated the New England colonies, and when the royally appointed Governor came to collect the charter, heated argument ensued, the candles within the room were blown out, and the charter was spirited away. The charter was hidden in Hartford, in a white oak tree henceforth known as the Charter Oak. Today, you can find the symbol of the Charter Oak on the back of the Connecticut state quarter. 

XLH Day fundraiser

The Network has been hard at work looking for ways to expand XLH Day, educate the community about XLH and introduce new fundraising initiatives that will help expand our services! We are happy to announce that we will be adding a community walk/run to take place at the end of XLH Day weekend.  

We are excited to bring this event to Connecticut, and know it will be a great way to educate about XLH! We hope you will join our efforts and participate, either in person or as a virtual team member from the comfort of your own home. Check it out here: 
https://xlhnetwork.networkforgood.com/projects/29363-1st-annual-walk-run-for-xlh

Things to do in Connecticut

XLH Day will be held on the Columbus Day weekend, a wonderful time of year to experience what Connecticut has to offer. To help you with your planning, we've asked Board Member Joyce Inman to share her experiences as someone who has traveled frequently to Yale from out of state. We'll have some more suggestions later on for outside the New Haven metropolitan area, but for now, here's what Joyce had to say:

Our family has been traveling to Connecticut to see our daughter’s XLH specialist for eight years. Our daughter was lucky enough to participate in one of the clinical trials for KRN23, and this meant even more travel to New Haven. One of the things we tried to figure out early on this process was how we could make the most of our visits and accomplish some nonmedical outings.

Following are a few of my and my daughter's favorites. Some of our suggestions take only a few minutes (a walk for ice cream) and others can take up your afternoon. Most of them do involve walking, but my daughter found most of our side trips enjoyable (and so did I). Enjoy, and let us know if you find other exciting places to visit in Connecticut.

Atticus (http://www.atticusbookstorecafe.com/)

Are you looking for a yummy bite to eat and a new book? We find ourselves in Atticus on most of our trips to make sure we have a good read for the trip home.

Arethusa (http://theshopsatyale.com/arethusa/)

We promise this may be the best ice cream in the New England area. It is worth standing in line for, and you may want to try the grilled cheese sandwich (the only food they sell) as well.

Yale Campus Tours (http://visitorcenter.yale.edu/tours)

Learning a bit more about the 300-year history of Yale University is fun for the whole family.

West Haven Beaches (http://www.cityofwesthaven.com/294/Directions-to-West-Haven-Beaches-Shoreli)

We are a southern family, so we are partial to beaches. New England beaches have an entirely different feel to them, and it is worth the ten-minute drive to neighboring West Haven to walk the shoreline with your family.

IT™ Adventure Ropes Course located in Jordan’s Furniture (http://www.jordans.com/attractions/it)

We lucked upon this one Saturday afternoon when we were looking for an indoor activity. Your family will love this indoor ropes course that includes a water and light show!

Yale University Art Gallery (http://artgallery.yale.edu/ ) Before going, be sure to check the hours (closed on Mondays) and also whether there's a special exhibit for a limited time.

2017 XLH Day: October 6-7

Mark your calendar: XLH Day 2017 will be held on October 7 (Columbus Day weekend) at Quinnipiac University's Frank Netter MD School of Medicine in North Haven, CT., with early-bird events on October 6. We'll have both educational and networking activities for adults and kids.

We hope to see you then!

Looking to next year

Even as we're putting the final touches on the program for this year's XLH Day in Houston, Texas, we're already thinking about the next event in 2017.

Picking a location starts by finding a keynote speaker. As we're all aware, there aren't that many experts in XLH, and we don't have the funds to transport speakers to our event, so the choice of sites depends on where potential speakers are.

Beyond that, we also look at factors that will increase attendance. That means we're most likely to choose a major metropolitan area (because the population density means there are more patients living within an easy traveling distance) with a major airport for those who might fly to the event. Another important factor is whether there are XLHers in the area who are willing to serve on the planning committee and help out during the event. A nice plus is if there are educational and cultural offerings nearby, like the popular Children's Museum near our previous event in Indianapolis, that might be of interest to anyone thinking of combining the event with a vacation.

Keeping those factors in mind, where do you think we should hold the next XLH Day?

Texas XLH Day registration is closed

Texas XLH Day registration is closed.

We look forward to seeing everyone who's registered, and hope to meet even more people at future events.

Last chance to register for XLH Day

Registration closes at midnight on Monday, July 11, 2016, so you're almost out of time! Don't risk missing the deadline -- register now at XLHDay.org

Children and teens at XLH Day

If you're still debating whether to attend TX XLH Day, would it help to know that we're planning some great activities for children and teens? (And we'll also have infant care services.)

Board member Rachael Jones has been involved with the well-received children's activities at the last two XLH Days, and this year's program promises to be even better than before.

Rachael is working on parallel programs for children and for teens. The activities will include a mix of education and fun, teaching "the ABCs of XLH" and "healthy living." There will be opportunities to create art, participate in a science demonstration and attend a mini-carnival of activities. She's also planning small group discussions about living with XLH, led by a licensed mental health professional.

So, register now, for yourself and your kids: xlhday.org Registration ends soon, at midnight on July 11, 2016. Don't miss out on all the education and fun!

A Texas playlist

We've got some musical inspiration for you, while you're thinking about coming to XLH Day in Texas. (And if you've already registered for the event, don't wait until we send out confirmations between July 12 and 17 to make your hotel reservations. Make them now, and if necessary, you can cancel them without penalty up until shortly before the event.)

To get the playlist started, Board Member Kathy Buchanan suggests "Deep in the Heart of Texas," which was the inspiration for our graphic (so you can sing along, changing the words to "Deep in the BONES of Texas"). Here's the Texas Chamber of Commerce's version: http://www.youtube.com/watch?v=VGF4ibgcHQE&sns=em

Board Member Joyce Inman consulted with her entire family, and they had a tie vote for Willie Nelson's "Beautiful Texas" and "Texas in My Soul." You can hear them both on Youtube: https://www.youtube.com/watch?v=GpZNfY_-dzY and https://www.youtube.com/watch?v=XmOy1qKw8IY

Gin Jones heard about this new release from fellow Board Member Chris Younger, which seems appropriate for those who are driving long distances to XLH Day (and we know several people are driving more than ten hours!):  Yarn's "Long Way to Texas" http://thealternateroot.com/index.php?option=com_content&view=article&id=5145%3Ayarn-lwtot&catid=202%3Atop-videos-of-the-week&Itemid=258

We have a bunch of other suggestions, but unfortunately there aren't official (posted by the copyright owner) Youtube links for any of them, but we're sure you can find them wherever music is available.

Past President Becky Mock suggests Stevie Ray Vaughan's "Riviera Paradise Live from Austin, Texas."

Board Member Chris Younger is himself a musician, so he has several suggestions: Stevie Ray Vaughan's "Texas Flood," Ellen Jewel's "Back to Dallas,"  ZZ Top's "LaGrange," and Miranda Lambert's "Texas Pride." 

Board Member Gin Jones recommends Lyle Lovett's "You're Not From Texas (But Texas Wants You Anyway)."

Board Member Rachael Jones (no relation to Gin!) found one perfectly on point for us: "Houston (Means I'm One Day Closer to You)" by the Gatlin Brothers.

We're looking forward to seeing y'all in August! Make sure to register now, if you haven't already: http://xlhday.org/

Texas XLH Day registration is open

Registration is now open for XLH Day in Houston, Texas!

For more information and to register, go to http://xlhday.org/

Deep in the BONES of Texas!

It's just over two months to XLH Day (August 13, Houston, Texas) -- have you made your transportation plans yet?

As always, we've got a great keynote speaker -- this year, it's Mary Ruppe, M.D.
http://www.houstonmethodist.org/doctor/mary-ruppe -- who's putting together a great collection of medical care providers with experience treating XLH patients. There will also be representatives from Ultragenyx Pharmaceutical, and fun, educational activities for children of all ages.

This year's venue will be the the Shriners' Hospitals for Children in Houston. As in previous years, we've made arrangements for special pricing at hotels convenient to the venue for the night before and the night after the event.

Also as we've been able to do for the last two events, we'll be offering reimbursement for one night's hotel stay per family for the first thirty people to register. To be eligible, you'll need to have an active account at discussion platform, so if you haven't joined yet, you can do it now for free at forum.xlhnetwork.org so you'll be ready when registration opens (not yet!).

But that's not all! We're offering some extras this year. For starters, we'll have t-shirts with a design specifically for this year's event. You can see it at our official facebook page: facebook.com/xlhnetwork (And thanks to Marah for providing the initial inspiration for the design!)

In addition to the usual informal meet-and-greet on Friday evening,  we're adding another informal gathering on Saturday evening for anyone who wants to stick around for a bit longer before saying goodbye to new friends.

Also new this year: we expect that (almost) the entire board of directors will be in attendance, so you can meet us, ask us questions and let us know how we've helped you and how we can do more for you and your family.

We expect to have registration open on or about June 8th (don't try to register yet, or your information will be lost!). Keep an eye here or at the discussion platform or the official facebook page for updates.