Second virtual walk/run

We are kicking off our 2nd annual Virtual Walk/Run for THE XLH NETWORK, INC as a way to countdown to Baltimore! Our virtual walk/run will take place from July 30–October 7th.

Spread the word and raise awareness by creating a peer to peer page and encouraging your friends, family members, colleagues and others to support your efforts. By becoming a fundraiser for THE XLH NETWORK INC, you will help us continue our mission to help children and adults living with XLH. Raising funds for the Network helps us continue to advocate for you and your families.

For more information and to sign up:https://xlhnetwork.networkforgood.com/projects/54586-2nd-annual-walk-run-for-xlh

Sharing your passions

Kimberly Murray is a member of the Network who has XLH herself and a daughter with XLH. She recently participated in a couple of fundraising efforts, and she's here to tell you why and how she did it. 

October has always been my favorite month. For one, it's my birthday month. It is also a time Louisiana has some of its best weather. Not too hot, low humidity, and a light airy breeze making it just cool enough for a cute sweater/scarf combo. October is also special because it's the month when XLH Day is celebrated, so it seemed appropriate to donate all of my birthday money this year to The XLH Network, Inc.

I'd hoped that my husband, daughter and I would all be able to attend XLH Day this year, but sadly we just couldn't fit it into our schedule. So I decided to start my own social-media-based fundraiser for the Network instead. I have a lot of family and friends who follow my and my daughter's story on having and dealing with XLH, and they are always asking how they can help, what they can do. For one two-week period right around my birthday, I asked all of my friends and family if they could donate to my XLH fundraiser. I set a goal, an end date, and went public.

I was overwhelmed with the amount of love, support, and donations made to my fundraiser. I had exceeded my goal! Fundraising can be so much fun when you stay motivated and never lose sight of the finish line.

It also helps to get other involved. I had many close relatives and close friends help share my story. When you are able to share your passion with others, you are opening doors to educating them on the importance of awareness. And this awareness can be anything that holds significance and vitality in one's life. For myself and my family, it is the Network.

The amount of donations I received in a short two-week period has encouraged me to continue and increase my involvement in sharing and spreading awareness of XLH via social media, local spotlights, and of course fundraising. One of my next goals will be to encourage people to sign up as sustaining donors, who give a set amount every month or year, which helps the organization with its budgeting.

Next up is #GivingTuesday! I am proud to serve as a #GivingTuesday Ambassador (someone who will spread the word about a cause) for The XLH Network! You can find my #GivingTuesday peer-to-peer fundraising page (or start your own) here:
https://xlhnetwork.networkforgood.com/projects/40097-givingtuesday

FIghting the fundraising fears

Susan Faitos is an XLHer who has helped us with XLH Day in the past. She's here to talk about what it was like to do a peer-to-peer fundraiser for the Network. 

When The XLH Network, Inc. reached out for volunteers to participate in peer-to-peer fundraising this past summer, I was torn. It was important to me to support the Network, but I was very nervous about reaching out to people to ask for money. I was also uncomfortable with the idea of drawing attention to my medical issues. It brought back all kinds of childhood anxiety about the social stigma of being "different."

I decided to push through my fears and do it anyway. I created my fundraising page and sat at my computer staring at the send button for quite a while. Could I really do this? What would people think? Did I want this kind of attention?

I finally took a deep breath, sent the emails and posted it to Facebook, pretty much terrified of what the response would or wouldn't be.

For the next few days I was often brought to tears…in a good way. The response and the personal messages I received from current and childhood friends, long-lost cousins, colleagues, etc. was amazing. I've had donations from people from all walks and eras of my life, and the generosity has really astounded me. I had no idea so many people in my life could be so supportive and encouraging about my personal experiences and my fundraising goals.

As a result, I'm feeling a huge surge of gratitude and self-esteem. This was such a rewarding experience, and way beyond what I imagined when I first hit "send." This may have been a fundraiser for The XLH Network, Inc., but the benefit to me personally went further than any dollar amount ever could.

For more information on how you can help, perhaps by doing a peer-to-peer fundraising project like mine, check out the Network's #GivingTuesday page here: https://xlhnetwork.networkforgood.com/projects/40097-givingtuesday

Bowl-a-thon for the Network!

One of our members, Robert DeRemer, Jr., found a great, fun way to help the Network, and we asked him to share a bit about his inspiration and process. At our official Facebook page, facebook.com/xlhnetwork, you can see a picture of Robert with Scientific Advisory Board Chair Carolyn Macica, who inspired him, and the Network's president, Bill Coogan. 

My name is Robert DeRemer, Jr. I am currently 51 years old. I was diagnosed with XLH when I was seven. A few years ago, it came to my attention that the Frank H. Netter School of Medicine at Quinnipiac University in North Haven CT was recruiting people with XLH to investigate their mobility, strength and flexibility, and to talk about how patients manage their lives.

I was lucky enough to be approved for the research study, where I met the principal investigator Carolyn Macica. The entire faculty and students from Quinnipiac were great to us during the tests. Right from the beginning, I could tell that Dr. Macica was very dedicated to the field of XLH. She strives to do the best to educate people about the rare disease as well as expand her own horizons through many research projects. She continues to be a source of support for me.

As XLH Day 2017 approached, Dr. Macica mentioned that help was needed to raise funds for the event. Since I'd just started to bowl (as a result of progress in my physical abilities after joining a clinical trial), I thought to myself: How about a Bowl-a-thon?

My plan then went into action! The bowling alley was very supportive and through friends I was able to find a DJ that would volunteer his services. I also secured raffle items from many local businesses for gift cards/certificates or baskets. We ended up with over 20 raffle items! The bowling alley also donated a portion of the proceeds from each game and shoe rental. In addition, I raised funds online so that those who didn’t live locally could also support the event. In the end, I was able to raise a thousand dollars for The XLH Network, Inc.

The money was donated to The XLH Network, Inc., during XLH Day, as my way of honoring Dr. Macica. I couldn’t think of a better person to honor with donating in her name. I would like to thank Dr. Macica for everything she does for those living with XLH. I would also like to thank the Network for all they do in support of patients and giving those living with XLH a voice.

What I learned from the fundraiser is that even with a disability such as XLH, we don’t have to sit back and watch the world pass us by. When I started, I had no idea how to go about hosting a fundraiser. I just went forward with a goal in mind of helping. I never dreamed that I could host an event that would raise a thousand dollars, but I did. If I can do something like this, you can too!

For more on how you can help, check out the Network's #GivingTuesday page: https://xlhnetwork.networkforgood.com/projects/40097-givingtuesday

Message from the President, Bill Coogan

It's not often that something life-changing happens to an entire global community, but that could be true for XLHers of all ages in 2018. Next year may see the approval, all around the world, of the first-ever treatment for XLH (and the related hypophosphatemias) that gets at the root of the problem (phosphate wasting).

But the treatment will only help if the relevant people know about it! Our next big challenge will be to reach everyone in both the patient population and the medical community and then to educate every last one of them about the realities of living with XLH, why treatment is necessary and what the treatment options are.

At the moment, there's a huge disconnect between what the experts know and what's happening in the day-to-day treatment of XLHers by non-experts. While some medical providers are current on their understanding of XLH, there are far too many instances of uninformed medical providers telling patients that there's nothing that can be done to help them (or that their symptoms are unrelated to XLH). Some patients can challenge the bad advice, but may not be able to find any better medical provider, depending on where they live. Or they may lack the knowledge or the resources to successfully challenge their medical providers' statements.

We plan to work on both sides of those conversations. Some initiatives will focus on educating the medical providers so they'll give better advice, and other projects will focus more on educating the patient community about current options so no one will be discouraged by outdated advice.

For the health care providers side of the equation, we'll be attending more medical conferences than ever, including possible going to the meetings of the American Association of Nurse Practitioners and the American Academy of Clinical Endocrinologists; and holding a Patient-Focused Drug Development meeting (attended by a representative of the FDA) in conjunction with XLH Day 2018 (in the Baltimore/Washington area) to create materials (patient testimony and guided discussions that are videotaped and then transcribed for dissemination) about the adult symptoms of XLH.

For the patient side of the equation, we'll be creating and sharing some short videos by experts on various aspects of XLH and publishing age-appropriate materials to help children understand their XLH. Plus, as we've done for the past seven years, we'll be offering the community all the resources of XLH Day, with expert speakers and a chance to network with other XLHers and their families.

But first, we need to be sure we have the resources we need to carry out these initiatives at a critical time for the XLH community. In a few weeks, we'll be participating in #GivingTuesday (November 28th), and before then we'll share the details of how you can get involved, not just by sending money, but also by sharing our Tweets and Facebook posts in your social media circles.

You don't have to wait until then, of course! We aren't waiting to start the necessary work, after all. Donations can be made here any time: https://xlhnetwork.networkforgood.com/projects/29168-every-day-giving

School's back .... Well, almost

It may only be mid-July but in just a few short weeks, school will be back in session! It can be a hectic time of the year, from shopping for clothing to making sure everything on the supply list is in the backpack before the first day.

Did you know there’s an easy way to shop for back to school AND support the Network at the same time? That’s right…and you can do it all from the comfort of your own home. No trips to the mall, no worrying about parking, no hustle and bustle. A few short clicks of the mouse and you will have everything you need and benefit those living with XLH.

When you shop on Amazon Smile or IGive and choose The XLH Network, Inc. as your charity, a portion of your purchases benefits us! It’s really that simple. If Amazon is your retailer of choice, visit smile.amazon.com and indicate The XLH Network, Inc. as your charity and you’ll be well on your way to taking advantage of all the great deals that Amazon offers. There’s a reason it’s the world largest marketplace, and now you can shop from the comfort of your own home and help those living with XLH.

IGive offers a similar option. You can choose from over 1700 online stores at the IGive Marketplace and a portion of your purchases will benefit The XLH Network, Inc. All you have to do is set up an account at IGive, select The XLH Network, Inc., as your charity, and you’re shopping, and helping, with one click of the mouse. Go here to set up an IGive Account: https://www.igive.com/welcome/lp16/cr64a.cfm

And remember, you don’t have to limit your online shopping to just back to school time. These programs are available throughout the year so keep it in mind for birthdays, Christmas, Father’s Day, Mother’s Day, anniversaries or "just because" days!

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

Looking forward to the next twenty years

Message from the Network's President, Bill Coogan:

We've already reviewed some of the milestones of the past twenty years, and now I'm here to share some of our expectations for the milestones of the coming year and beyond. If you want to see these goals come to fruition, we need your financial support now. You can donate here: https://donatenow.networkforgood.org/xlhnetwork?code=donate%20page

Already, 2017 is shaping up to be an eventful year. We hope to announce the hiring of an Executive Director soon, who will help us to accomplish our more substantive goals. 

In addition to our regular activities that we've engaged in for the past twenty years, of representing, supporting and advocating for the XLH community (and those with related phosphate-wasting disorders), we'll be particularly involved in the following major programs:

• Organizing the next XLH Day to be held at Quinnipiac University's Frank H. Netter School of Medicine (in North Haven, Connecticut) on October 6-7, 2017. 
• Collecting data for a Natural History of XLH (and related disorders).
• Publishing educational materials geared toward children, providing age-appropriate information about XLH (and related disorders).
• Publishing Weak Bones, Strong Wills, The Stories of XLH, a collection of essays about the XLH experience. 
• Representing the XLH community (and those with related phosphate-wasting disorders) as KRN23 goes through the regulatory process. 

I'm sure you'll agree that these are all critical projects that need to be undertaken sooner rather than later, and none of them are without cost. If we're to do everything on our agenda, we need your financial support. 

Please help us to help you. Donate now: https://donatenow.networkforgood.org/xlhnetwork?code=donate%20page

Thank you.

Thank you

Thanks to all the generous donors who participated in #GivingTuesday yesterday and chose the Network to receive the funds. We're already busy setting our budget for next year, looking for the best ways to put that money to good use (and to squeeze every penny's worth of value out of it by using volunteer services for most of our activities). 

If you have yet to make an end-of-year gift, we hope you will consider making a donation to the Network so that we can achieve all of our plans and goals in the upcoming years. https://donatenow.networkforgood.org/xlhnetwork?code=donate%20page

Thank you again for your generosity. Stay tuned for some exciting news in 2017 as the work we've done this year, thanks to previous years' donations, comes to fruition with an amazing XLH Day (October 6-7 in North Haven, CT), the launch of the Natural History Study, publication of new educational materials for children, and release of the book of XLH stories (which is still looking for stories; send them to xlhstories@gmail.com). 

We expect 2017 to be something of a breakthrough year, with advances in science, possible FDA approval of pediatric use of KRN23 and the ever-increasingly accepted role of patient groups' involvement with the medical research community. We hope you'll be here, sharing in the good news and supporting our work.

It's your turn now

You know how hard we're working to help the XLH community. Now it's your turn to support the Network.

#GivingTuesday is here! Help the XLH Network bring awareness about our disease to medical and patient communities all over the world by giving this holiday season!

Don't forget: in honor of the Network’s twentieth anniversary, donors who give at least $20 will receive an XLH Network sticker!

And don't forget your #unselfie to show your support! Take a picture of yourself holding a sign that mentions the XLH Network, #GivingTuesday, and being #unselfie! Let's take this day to show faces of XLH to people all over the world. And for those of you who prefer not to take #unselfies, we have an "I Pledged" graphic that you can use instead! You'll find it at our official Facebook page: https://www.facebook.com/xlhnetwork.

Now is also a great time to recruit a new member! If you can't give financially, you can give your support. Help one of your friends or family members with XLH become a part of the XLH Network. Ask them to like our Facebook page or join our forum.

Let's make our voices heard this #GivingTuesday! We are our best advocates!

Giving thanks

Three things for the XLH (and ADHR, ARHR and TIO) community to be thankful for this year:

1. Hope for the future, with the encouraging data coming out of the KRN23 trials and other research into understanding the metabolic process that leads to phosphate wasting in X-Linked Hypophosphatemia (and the related autosomal conditions, as well as Tumor Induced Osteomalacia.

2. The great attitude of the members of our community. For one example, check out Cheryl's story here: http://ultrarareadvocacy.com/patient-journeys/ And if you want to meet more people who share your experiences (as well as getting the latest information on treatment), mark your calendar now for XLH Day 2017, which will be held in Connecticut on October 6-7.

3. Twenty years of support and advocacy by the XLH Network! And while you're thinking about how much you appreciate the Network, here's a reminder that if you're doing holiday shopping at Amazon in the coming month, you can show your support by enrolling in the Smile program and choosing the Network as your beneficiary. We get a percentage of your purchase, at no additional cost to you! Find out more here: https://smile.amazon.com

Giving Tuesday for Twenty Years of Networking

On this, the twentieth anniversary of the XLH Network, we hope you'll remember us on Giving Tuesday, November 29th.

You can donate here: https://donatenow.networkforgood.org/xlhnetwork?code=donate%20page

We'd be particularly grateful for recurring (also known as "sustaining") donations that help to guarantee our long-term viability.

If you can't spare any money, or if you want to do even more than a donation, you can share your appreciation of the Network, encouraging others to consider giving to the Network over on Twitter, using the hashtags #GivingTuesday and #XLHNetwork.

Thank you.

President's message: Celebrating 20 years of the Network

From the Network's president, Bill Coogan:

As we enter this season of giving and acknowledge twenty years of accomplishments, please help us continue to help you. Donate now:  http://xlhnetwork.org/index.php/donate/

Twenty years ago this summer, Larry Winger created a website to collect information on XLH and then was joined by others to form The XLH Network. The listserv began beta testing in November 1996, and roughly two weeks later, there were subscribers from England, British Columbia, South Africa, and the United States.

A lot has changed since then. We've grown from a community of just a handful of people to a network that reaches thousands of patients and their caregivers. We've gone from not knowing what causes the phosphate wasting to the discovery of the previously unknown hormone, Fibroblast Growth Factor 23 (FGF23). We once viewed the prospect of effective treatment as more science fiction than fact, and now we have a promising new potential treatment on the not-too-distant horizon.

It seems fitting that this anniversary year has been one filled with significant accomplishments. The Network's board has worked hard to maintain all the work of previous years: educating and advocating for the various stakeholders in our community—patients, families and health care providers—by attending medical conferences, sharing what we know about XLH and offering safe places, like our forum and XLH Day, for members to help each other.

Beyond that, though, the anniversary year has also seen some major new initiatives that will come to fruition between now and our twenty-fifth anniversary. The Natural History Study will gather data about the progression of XLH throughout the entirety of patients' lives. For the more personal side of the story, we're collecting stories from our community about living with XLH, for a book entitled Weak Bones, Strong Wills, The Stories of XLH. Several other publications are in the works, including an updated dental brochure and materials to help children of various ages understand their disorder.  

Much of this work is done by volunteers or funded by grants, but there are always uncovered financial costs. The Natural History Study is part of the National Organization for Rare Disorders (NORD) Natural History Program and is paid for in large part by an FDA grant to NORD. Still, the Network will need several thousand dollars a year to insure that the study can continue long enough to provide useful data. Volunteers have donated their time to produce our various educational materials, but we'll still need to pay for their publication. XLH Days are a great experience for those who attend, but again, they can't happen without financial support.

Celebrating the Twentieth Anniversary of the Network

This November will be the twentieth anniversary of the coming-together of XLH patients to form the Network. What an amazing two decades for a grassroots organization of rare disease patients. It's likely that none of those original founders could have imagined where we'd be today, with so many members, so much improved knowledge about the underlying metabolic cause of the condition, and so much hope with the possibility of a breakthrough therapy on the horizon.

So far in 2016, we've been working hard to ensure that the next TWENTY years will bring even more accomplishments for our community. We've already represented families with XLH at three major medical conferences. We've hosted the Texas XLH Day and had the opportunity to meet families who are part of our network, as well as doctors and researchers who are working to support our community. We are also closely monitoring the progress of the clinical trials for KRN23, a new and potentially life-changing treatment for patients with XLH.

And that's not all. You'll be hearing about some other work in the next month, as the behind-the-scenes projects come to fruition. In particular, we're on the verge of launching the XLH Natural History Study and Patient Registry—a platform that will, for the first time ever, allow us to collect the data necessary to further the research into XLH and related conditions.

We hope you'll support that ongoing work and join in the celebration of the past TWENTY years of community and advocacy. For every donation of at least TWENTY dollars made to The XLH Network, Inc. from October to December, donors will receive one of our new XLH Network car stickers. (They're about 3" x 5", and you can see a picture at our official facebook page, facebook.com/xlhnetwork )

We hope you will enjoy this small recognition of your contributions to the Network and the work that we do. And, of course, we hope that people will see your sticker on your car or laptop case and ask you about The XLH Network, Inc. When they do, be sure to take a moment to educate them!

Go to http://xlhnetwork.org/index.php/donate/ to donate and get your XLH Network sticker today!

Back to school shopping

It's that time of year -- outfitting the kids for back to school. That used to mean trips to the mall, but these days, a good bit of the shopping is done online through Amazon and other digital retailers.

If that's how you shop, please consider using the Amazon Smile program and naming the XLH Network as the beneficiary. It's easy, it'll make you feel good to know that you're contributing to our important work, and, perhaps best of all -- it doesn't cost you anything.

To shop using Amazon Smile, simply go to smile.amazon.com. On your first visit to the site, you will need to select the XLH Network as the charitable organization of your choice before you begin shopping. The site will remember your choice, and every time you shop with Amazon you will benefit our organization and the work we are doing on behalf of families with XLH. If you are already an Amazon shopper, we hope you will consider selecting the XLH Network as your charity of choice and use Amazon Smile.

Another option is to shop using iGive. When you set up an account with iGive and go through their portal to shop at more than 1,700 online stores, a portion of your purchases will be donated to the XLH Network. It is quick and easy, and, once again, you are simply making the same purchases you would make otherwise, but you are benefitting the Network at the same time! You can set up an iGive account here: http://www.igive.com/welcome/lp15/wr34.cfm?c=32912. Just remember to choose the XLH Network as your chosen organization.

Thanks for your support!

Shopping for the Network

Did you know that there are a number of ways to give to the XLH Network, Inc. without actually writing a check? Obviously we hope you will consider donating throughout the year, and, of course, you can give appreciated stocks or work with your employer to ensure matching gifts to the Network. But there are also a number of ways that your online experiences can benefit the Network without costing you anything.

The XLH Network is one of the many charitable organizations registered with the Amazon Smile program. If you are an online shopper with Amazon, you can set up your account so that Amazon gifts .5% of your purchases to the Network! We don't know about you all, but the ease of online shopping has changed our lives for the better. Amazon Smile allows you to make purchases you were going to make anyway and a small portion of the amount you spend will go to the XLH Network.

To shop using Amazon Smile, simply go to smile.amazon.com. On your first visit to the site, you will need to select the XLH Network as the charitable organization of your choice before you begin shopping. The site will remember your choice, and every time you shop with Amazon you will benefit our organization and the work we are doing on behalf of families with XLH. If you are already an Amazon shopper, we hope you will consider selecting the XLH Network as your charity of choice and use Amazon Smile.

Another option is to shop using iGive. When you set up an account with iGive and go through their portal to shop at more than 1,700 online stores, a portion of your purchases will be donated to the XLH Network. It is quick and easy, and, once again, you are simply making the same purchases you would make otherwise, but you are benefitting the Network at the same time! You can set up an iGive account here: http://www.igive.com/welcome/lp15/wr34.cfm?c=32912. Just remember to choose the XLH Network as your chosen organization.

And, of course, if you have an idea for fundraisers in your local community, we hope you will contact us so that we can assist you in any way we can. Thank you for your continued generosity to the Network and for considering some of these quick and easy ways you might contribute to our cause!

#givethanks

We are excited to share the XLH Network’s 2015 fundraising report with our members! During the 2015 calendar year we met or exceeded all of our fundraising goals, and we have each of you to thank for our success.

This year included our first Give Rare campaign, our annual end-of-year fundraising, as well as our second #GivingTuesday campaign. The Give Rare campaign was a first for us, and it was so much fun to think about how to raise money and awareness alongside other nonprofits devoted to rare diseases.

We also had two grants funded this year—one to assist with the 2015 XLH Days and one to assist with hiring an administrative assistant. And, to date, we’ve written two additional grants and have plans to write at least one more.

In addition, thanks to our members, our end of year giving increased by 46% in funds and almost 25% in the number of donors who participated. Thanks to your generosity, we have an approved budget and we are making plans for an exciting 2016!

Message from Network President Becky Mock

It has been an honor and a privilege to serve as the President of the XLH Network for the past three years, but it is time for me to pass the gavel to someone else. I will be stepping down as president at the end of this year, although I will continue to work as an at-large Board member.

Current Vice-President, Bill Coogan, will be stepping up to the presidency. Many of you have met Bill and know, as I do, that he brings a great deal of dedication, skill, and personality to the organization.

Over the past few years, we've accomplished a great deal—the Board of Directors, the membership, and I, all working together. It has been my mission to transition the Network from an all-volunteer group to one with paid staff, and I am pleased to say that we have taken the first steps toward that goal.

During my tenure, two grants were funded by Ultragenyx Pharmaceutical, one to underwrite a substantial portion of the cost of hiring an administrative assistant, and the other to do the same to hire an executive director. The administrative assistant is in place. The process for hiring the executive director has begun, and I am confident that with grant funds available and the recruitment process underway, we will move forward and hire our first executive director in 2016.

I am proud that we have seen XLH Days become life-changing experiences, offering both educational opportunities with expert presentations about XLH, and fun times helping people with XLH meet "someone like me," perhaps for the first time ever. We know how important it is to bring XLH Day to all parts of the country. We’ve held events in New York, Connecticut, Indiana, and California. Work is well underway for the Texas XLH Day in 2016. We’ll get back with more information and a definite date as soon as we can get the logistics sorted out.

We cannot take a rest. We must forge on. The XLH Network is the ONLY organization that advocates for you and others with XLH. There is much more to do to maintain our new initiatives and advance our future projects. We cannot do all that is needed with the funds we have now. Our budget is tight, focused and designated for the work we're doing today. To maintain, we need your help. To grow, we need more donations and support. We are the best investment you can make if you wish to make a difference in the lives of everyone with XLH.

Finally, I would like to thank everyone that has volunteered or made a donation during my presidency. I'm counting on you to offer that same support to future presidents. Please help the Network continue to advocate for everyone with XLH and their families.

We can't do it without you!

Sincerely,

Becky Mock, President

Record-setting #GivingTuesday

We are excited to announce that this year we had our best #GivingTuesday in the history of the XLH Network, and this, of course, is due to the generous contributions of our members, family, and friends.

Including the Board’s matching funds, #GivingTuesday 2015 resulted in $10,465 in donations to the Network’s efforts. This is almost ten times the amount of money we raised last year for this day of giving back!

So, as we enter the chaos of the holiday season and look forward to 2016, we want to say thank you for your generosity. We are only as strong as our membership, and our membership showed up in full this #GivingTuesday, and for that we are very grateful.

Of course, it is not too late to give to the Network. If you have yet to make an end-of-year gift, we hope you will consider making a donation to the Network so that we can achieve all of our plans and goals in the upcoming years. https://donatenow.networkforgood.org/xlhnetwork?code=donate%20page

And do not forget that there are many ways to give: like our Facebook page, join us on Twitter, or encourage someone else to do so! Help us extend our reach so that every person with XLH has access to our wonderful community and to the latest information on coping with our disease.

Thank you again for your generosity. We are already preparing for 2016, and we can’t wait to share our plans with you. Plus, we're looking forward to new trials and treatments that may mean new opportunities for all of us. It is going to be a full year, and we are excited. We hope you are too!

#GivingTuesday: Double the Hope!

#GivingTuesday is here! Help the XLH Network bring awareness about our disease to medical and patient communities all over the world by giving this holiday season!

Remember, if you donate to the XLH Network today at http://xlhnetwork.org/index.php/donate/, the board of directors of the XLH Network will match up to a total of $2,000 in donations.

Don’t forget your #unselfie! Take a picture of yourself holding a sign that mentions the XLH Network, #GivingTuesday, and being #unselfie! Let’s take this day to show faces of XLH to people all over the world. And for those of you who prefer not to take #unselfies, we have “I Pledged” graphics that you can use instead! You'll find them at our official Facebook page: https://www.facebook.com/xlhnetwork

And, of course, now is a great time recruit a new member! If you can’t give financially, you can give support. Help one of your friends or family members with XLH become a part of the XLH Network. Tell them to like our Facebook page or join our listserv.

Let’s make our voices heard this #GivingTuesday! We are our best advocates!