eNews June 2014


PXE LogoE-NEWSLETTER
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

 


Al Ditheridge and son Chad,
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."

Read Feeling Like a Useless Parent

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.

Remembering PXEer Al Ferrari

 


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."

Read Stacy's story

 


 

Photograph by Kayla Costin

New artists, Kayla and Wendy! 

Check them out at PXE and Art!

Photograph by Wendy Bateson

 

 

 


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.

More information

 


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.