Researchers are looking for adult XLH patients in Japan and Korea, to participate in a study involving KRN23, the antibody being developed to reduce excess FGF23, which appears to be at least part of the root cause of XLH patients' symptoms.
You can read more about it, and get contact information, here: http://clinicaltrials.gov/ct2/show/NCT02181764?term=xlh&rank=8
The XLH Network, Inc. does not endorse or critique specific clinical trials, and does not counsel individual patients either for or against participation in any specific clinical trial. Prospective volunteers should always carefully review the clinical trial's informed consent documentation, and discuss the pros and cons of their participation with trusted advisors, including their health care providers and family members.
Wednesday, August 27, 2014
Wednesday, August 20, 2014
XLH Video won Telly award
The video on Growing Up With XLH (which you can see here) was entered in the Telly Awards, which "honors the very best film & video productions, groundbreaking online video content, and outstanding local, regional & cable TV commercials and programs."
And it won the bronze award in the Health & Fitness category!
Board Member Bill Coogan went to Quinnipiac University to meet with the people behind the video's production, which included the Network's Scientific Advisory Board's chair, Dr. Carolyn Macica, Peter Gallay (holding the Telly Award) and Justin Schussler. Peter led the video team, which included Justin Schussler, Michael Vaspasiano, and a student intern, Justin Hall. The video has been viewed in excess of 1,700 times since April.
Wednesday, August 13, 2014
Top 5 Reasons to take the Burden of Illness Survey
Reason #5... It's easy. To get started, just click here: or go to https://www.amihealthy.com/custom/ultragenyx/burdenofillness/burdenofillnesshome.aspx?SITE=XLHNETWORK
Reason #4...If everyone does it, I'll stop pestering you about it, and we can talk about something more fun like chocolate and parties.
Reason #3...You can be a part of history. This survey has the potential to be the first-ever comprehensive collection of XLH patients' symptoms and related conditions. (Alternatively, or in addition, if you were a patient at Shriners' Hospital, they are recruiting their "graduates" -- adults who were treated there as children -- for a follow-up study, which you can read more about here: http://xlhnetwork.org/files/9613/9931/2887/Graduate_Study_Flyer_Edited2_1.pdf)
Reason #2...You'll be helping to pave the way for better treatment for yourself, as an adult with XLH. Once there's a database correlating our symptoms with XLH, you're less likely to get weird looks from your doctor when you mention your wide array of symptoms, and you won't have to keep asking, "Is this new symptom related to my XLH?" because you'll be able to look up the answer in the published results, or refer your doctor to those results.
Reason #1....and this is really what it's all about .... you'll be helping to pave the way for better treatment for your children and grandchildren. Especially if you have minor children, and can enter their information into the survey, you'll be helping to provide much-needed information that all future pediatric patients will benefit from. The more participants there are in the study, the more the scientists can learn.
As always, the XLH Network, Inc. does not endorse or critique specific medical research, and does not counsel individual patients either for or against participation in any specific medical research. Prospective volunteers should always carefully review the medical research's informed consent documentation (which is included at the survey site), and discuss the pros and cons of their participation with trusted advisors, including their health care providers and family members.
Reason #4...If everyone does it, I'll stop pestering you about it, and we can talk about something more fun like chocolate and parties.
Reason #3...You can be a part of history. This survey has the potential to be the first-ever comprehensive collection of XLH patients' symptoms and related conditions. (Alternatively, or in addition, if you were a patient at Shriners' Hospital, they are recruiting their "graduates" -- adults who were treated there as children -- for a follow-up study, which you can read more about here: http://xlhnetwork.org/files/9613/9931/2887/Graduate_Study_Flyer_Edited2_1.pdf)
Reason #2...You'll be helping to pave the way for better treatment for yourself, as an adult with XLH. Once there's a database correlating our symptoms with XLH, you're less likely to get weird looks from your doctor when you mention your wide array of symptoms, and you won't have to keep asking, "Is this new symptom related to my XLH?" because you'll be able to look up the answer in the published results, or refer your doctor to those results.
Reason #1....and this is really what it's all about .... you'll be helping to pave the way for better treatment for your children and grandchildren. Especially if you have minor children, and can enter their information into the survey, you'll be helping to provide much-needed information that all future pediatric patients will benefit from. The more participants there are in the study, the more the scientists can learn.
As always, the XLH Network, Inc. does not endorse or critique specific medical research, and does not counsel individual patients either for or against participation in any specific medical research. Prospective volunteers should always carefully review the medical research's informed consent documentation (which is included at the survey site), and discuss the pros and cons of their participation with trusted advisors, including their health care providers and family members.
Wednesday, August 6, 2014
A few good volunteers
As we mentioned in the Mid-Year Report a few weeks ago, the Board has been busy, and we expect to be even busier over the next eighteen months, now that we have a Strategic Plan in place.
Over the last year a number of our members have volunteered to serve on committees and write for our blog, and with our new Strategic Plan in place, with dozens of action items, we need even more volunteers!
As your intrepid blogger, I can always use a short commentary from a member about the challenges and triumphs of living with XLH (or especially about parenting an XLH child), similar to the pieces written by volunteers SJ Hunter, Jennifer West, Rachael Jones, and Andrew Shortall.
We also hope to do more fundraising in the future, so we can ensure the organization's sustainability and make our communities aware of the ways XLH affects people they know and love. The fundraising committee could use some support, and not just financially! If you are interested in organizing an event in your local community, let one of us know, so we can send you our fundraising guidelines.
As we grow, we'll be having a presence at more events in various parts of the country to educate the medical/dental community. Sending multiple Board members to those events to represent the organization can be costly, and doesn't fully take advantage of the skills and knowledge of our members, so we'll be looking for members who live near events to assist at them. Most of the dates and locations aren't determined yet, but if you'd be interested in assisting a Board Member in a booth at a medical conference, let us know, and indicate the general geographic area that's within a commuting distance for you.
Finally, we have a couple initiatives in the works for improving members' social interaction, so we can meet each other in person; we'll need a handful of volunteers to help with those efforts. We're currently forming a committee to organize these events, and we'll be announcing another social-interaction project soon, both of which will require several volunteers to supplement the work the Board can do.
I know we have some wonderful, knowledgeable and skilled members. If any of you can spare just a few hours every so often, or perhaps a few days a year, for the Network, please let me know (gin.jones at xlhnetwork.org). Together, we can do great things.
Over the last year a number of our members have volunteered to serve on committees and write for our blog, and with our new Strategic Plan in place, with dozens of action items, we need even more volunteers!
As your intrepid blogger, I can always use a short commentary from a member about the challenges and triumphs of living with XLH (or especially about parenting an XLH child), similar to the pieces written by volunteers SJ Hunter, Jennifer West, Rachael Jones, and Andrew Shortall.
We also hope to do more fundraising in the future, so we can ensure the organization's sustainability and make our communities aware of the ways XLH affects people they know and love. The fundraising committee could use some support, and not just financially! If you are interested in organizing an event in your local community, let one of us know, so we can send you our fundraising guidelines.
As we grow, we'll be having a presence at more events in various parts of the country to educate the medical/dental community. Sending multiple Board members to those events to represent the organization can be costly, and doesn't fully take advantage of the skills and knowledge of our members, so we'll be looking for members who live near events to assist at them. Most of the dates and locations aren't determined yet, but if you'd be interested in assisting a Board Member in a booth at a medical conference, let us know, and indicate the general geographic area that's within a commuting distance for you.
Finally, we have a couple initiatives in the works for improving members' social interaction, so we can meet each other in person; we'll need a handful of volunteers to help with those efforts. We're currently forming a committee to organize these events, and we'll be announcing another social-interaction project soon, both of which will require several volunteers to supplement the work the Board can do.
I know we have some wonderful, knowledgeable and skilled members. If any of you can spare just a few hours every so often, or perhaps a few days a year, for the Network, please let me know (gin.jones at xlhnetwork.org). Together, we can do great things.
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