eNews June 2012
June 20, 2012
Volume 5, No. 5
There's still time to register for Thursday's webinar!
Searching for the ABCC6 Substrate
Thursday 6/21/2012 at 2 PM Eastern Daylight
Presenter: Dr. Koe van de Wetering
Learn more about exciting research going on now at the Netherlands Cancer Institute - research that has the potential to help create a treatment for PXE! Register for the webinar
New Video - What to Expect from a Low Vision Session
Featuring low vision specialist Wendy Mons
Your eye doctor has referred you to a low vision specialist, and you are wondering - What happens now? Find out in this new video, "What to Expect from a Low Vision Session."
I want to keep driving - can the specialist help me with that? It is becoming more difficult to read and use the computer for work - is there a device that can make that easier?
"A low vision clinic is like a toy room," says Wendy Mons , low vision specialist from Mons International. "It has $50,000 worth of specialized equipment, from electronic talking devices to simple magnifiers, that will help with your vision loss. We match the devices to your needs."
This video features Wendy and optometrist Jim Lundy as they guide Marcus, who is legally blind from macular degeneration, through a low vision exam to determine the specialized devices that will improve his quality of life.
Limited Availability - Free, 1-Hour Low Vision Consult with Wendy Mons
at the PXE International 2012 Biennial Conference
September 22-23, 2012, Bethesda North Marriott, near Washington, DC
There are just a few slots available for this amazing opportunity for a free, 1-hour private consultation with low vision specialist Wendy Mons at this year's 2012 Biennial Conference. Register now for the conference to secure your spot! Watch the video, " What to Expect from a Low Vision Session ", to become familiar with the devices you will want to experiment with during your own consultation.
Session descriptions, conference schedule, presenter bios - and more! Conference information
Important : PXE International is committed to fill a certain number of sleeping rooms at the Bethesda North Marriott, or we are penalized $1,000s for the Marriott's lost revenue. Please use promotion code PXEPXEA when registering at the Bethesda North Marriott. This is a way that you can give to PXE International.
Books for PXEers
by Pat Manson
PXE got you down? Or just life in general?
Try one or two of these books for a pick-me-up. No You-too-can-be-happy or self-help books, but good stories.
Both fiction and non-fiction, they've all been chosen to make you feel better.
Tandem Biking New Zealand's Otago Central Rail Trail
by Dave Parker
About his three-day, 150km tandem bicycle ride on New Zealand's scenic Otago Central Rail Trail this March, PXEer Dave Parker said, "The main reason for this article is to inspire you all to do more exercise or something interesting or different, because the healthier we are, the better we are, the happier we are, and I love life and pushing my limits!"
Read about Dave's bicycling adventure.
June's Health Challenge is to Get Outside!
Wondering if there is anyone in your city, state or country with pseudoxanthoma elasticum?
The PXE International Registry includes more than 3900 individuals affected with PXE. Where in the world are they?
Check it out on the Map of PXEers.