eNews June 2014
June 30, 2014
Volume 7, No. 3
Let Your Voice Be Heard
Stories from participants in the magnesium clinical trial
What is it like to participate in a clinical trial? We’ll let the participants tell you. Here are stories from four individuals with PXE who have faithfully participated for more than 15 months in the clinical trial testing magnesium supplementation as a treatment for PXE.
A Tale of the Trial – Pseudoxanthoma Elasticum, Magnesium, and Me – By Jessie Gower
Scientific – and Magical! – By JoAnn Defrancesco
A Rewarding Experience – By Chris Rumer
Adventure of Hope – By Mary Ann Thaman
11 years old
Feeling Like a Useless Parent
by Al Ditheridge
"My son Chad's PXE diagnosis left me feeling pretty useless as a parent. I'm quite a practical problem solver, hands-on sort of fixer. Suddenly, our son is faced with something that I have no tools to fix! I felt I really did need to do something that at least might help give someone else the tools to help fix Chad! That's when I hatched my plan. I decided to attempt at least one physical, endurance event a month for a minimum of one year to help raise awareness and funds for PXE International."
Follow Al's event escapades on Facebook: https://www.facebook.com/FundraisingforPXE?ref=hl
Make a donation to Al’s Fundraising for PXE International: https://fundrazr.com/campaigns/0jNP7/ab/4393Jb
Remembering PXEer Al Ferrari
February 7, 1936 - December 16, 2013
Al was one of the first people diagnosed with pseudoxanthoma elasticum (PXE) by Dr. Kenneth Neldner, who was one of the first researchers to do extensive research on PXE. Al was also cofounder and later President of the National Association of Pseudoxanthoma Elasticum (NAPE). Angela Ferrari, Al’s daughter, writes about her dad’s early PXE history.
PXEer Stacy Duppong writes her story for
Inspired Woman magazine
Surviving Pseudoxanthoma Elasticum (Inspired Woman, April/May 2014)
"Earlier this year I was asked to tell my story of PXE in our local magazine called Inspired Woman. I was so excited to do this because awareness means so much to me ... I don't want PXE to run my life, I want to be the one in control."
New artists, Kayla and Wendy!
Check them out at PXE and Art!
PXE International is looking forward to a very exciting PXE research meeting this year! Recent findings are suggesting some potential therapies for PXE and potential new directions. PXE International invites all researchers interested in pseudoxanthoma elasticum and the ABCC6 gene to join us.
Meet our summer interns
Nikhil is an undergraduate student at McGill University in Montreal, pursuing a BA in anthropology and geography. Rebecca is a rising junior at Brandeis University majoring in Health: Science, Society, and Policy (public health) and biology. She is especially interested in the ethical, legal and social issues surrounding genetic information and the American healthcare system.