eNews August 2012
August 23, 2012
Volume 5, No. 7
Last Chance to Attend a PXE International Biennial Conference!
September 22-23, 2012 at the Bethesda North Marriott
After September 2012, PXE International will no longer host a biennial conference. So if you have never experienced this wonderful connection with other PXEers, now is the time!
PXE International received a generous donation, which will offset some of the costs of the meeting. So we are extending the Early Bird registration rate of $170 to September 10th. In addition, we have limited funds to offer to offset part of the registration fee for those who have not yet registered and are traveling to the meeting from afar. If you would like to attend and need a scholarship, please email Mary Peckiconis with a description of your need. We are unable to offer full scholarships for the registration, but can offer a small amount to several people.
PXE International s excited to be recruiting for a clinical trial run by Dr. Mark Lebwohl and his research team at Mt. Sinai School of Medicine. Volunteers will participate in a two-year study of magnesium supplementation as a treatment for PXE. Participants will be treated for one year with either an oral magnesium supplement or placebo. A placebo is a substance that has no therapeutic effect, used as a control in testing new drugs.
In the second year, all participants will receive the oral magnesium supplement. Three skin biopsies will be required – one at the beginning of the study, and one each at the end of the first and second year. Participants will need to travel to New York City for at least a few visits, and travel expenses will be paid for those visits.
To participate in this study you must be at least 18 years old and have biopsy-proven PXE. Some people may not be able to participate if they have other conditions.
If you want to participate in this study, contact study coordinator Giselle Singer at 212.241.3288.
To find out more about the details of the study design, type of supplements, and the criteria for inclusion and exclusion, read about it on Clinicaltrials.gov. It is study NCT01525875 . You may notice that it says that the trial is not yet recruiting; it is, and the site has not yet been updated.
Attention PXE Researchers!
You are invited to the 2012 PXE Research Meeting to be held at the Bethesda North Marriott on Monday and Tuesday, 9/24-25/2012.
Submit your abstracts
My First Ten Years
By Pat Manson
A PXEer tells the story of his first decade with legal blindness. He reviews the major changes in his life resulting from his vision loss and then compares those changes with what he would have projected at the time of the vision loss if he’d been thinking ten years into the future…which he wasn’t.
Small Changes Can Lead to Big Results:
How one PXEer fit getting healthy into a tight schedule
By Rachel Koren, Intern, PXE International with Karolina Perino
Getting healthy doesn't have to start with running a marathon. The smallest changes can start you off. By letting that momentum build slowly, the results may come more quickly than you expect.
Easy Fundraising Ideas
Donate the coins from your spare change jar
Mary Leblanc, our very own Email List Manager, suggests an easy way to donate to PXE International. “Yesterday I took my full and heavy spare change jar to the Coinstar machine at the supermarket. The result, after Coinstar took its nine percent, was $87.46. I came home and wrote a check to PXE International for $87.46. It was an easy and painless way of giving.” If you don’t have a Coinstar machine near you, the United States Post Office has a small box that mails for $5.05, no matter what it weighs, and the box is free. Just mail it to PXE International and we’ll do the rolling for you!
Help PXE International by cutting caffeine
Do you get your morning coffee at a coffee shop? If so, you probably spend an average of $65 per month, and it’s probably even more if you get those fancy drinks. Consider combining a PXE International Health Challenge such as cutting down on caffeine or calories (because those drinks are usually not very good for you) with donating what you save to PXE International. You are already used to spending that money so you won’t feel the loss as much – AND, you benefit from a healthier morning ritual.