News Articles

Welcome to the PXE News section. Here you'll find articles about pseudoxanthoma elasticum and the men, women and children whose lives are affected by it.

November 18, 2011
Sit and Quit? Or Fight It!
The story of a fellow PXEer with vision loss who is determined to enjoy her life.

October 2, 2011
PXE International Regional Meeting in London, England
Elizabeth Terry and around 30 PXEers and their families got together to discuss and share their experiences in the ongoing pursuit of wellness and to enhance the reach of the support structure PXE International represents.

August 1, 2011
PXEer Kate Williams' Journey
When Kate Williams was diagnosed with PXE at age 18, her doctors didn’t know what to tell her. Focused primarily on cardiac issues, they never warned her that her eyesight might be affected.

April 22, 2011
High Energy at the Australia Regional Meeting
For more than two and a half hours the group of 12 discussed the ins and outs of PXE.

April 1, 2011
PXE and Art Spotlight: Kerri Wilson
Kerri's PXE diagnosis helped her discover her passion for pottery.

April 1, 2011
Regional Meetings are a Wonderful Opportunity
Living with a rare disease can be an isolating experience. Many PXEers may never have encountered anyone else with their disease. For these people, their loved ones, and other members of the community, PXE regional meetings are incredible opportunities to connect with affected individuals in their area and get answers.

March 18, 2011
PXE International Regional Meeting Convenes in Vancouver, Canada
A small group of affected individuals gathered for a fun and informative evening.

February 24, 2011
First PXE Regional Meeting of 2011 a Great Success
For many PXEers, this was the first time they had met another person with PXE.

February 16, 2011
In Memory of Diane Rohrmann
While she struggled mightily with mobility issues and diminished vision due to PXE, she rarely complained, always looking to the future.

November 9, 2010
Elizabeth Terry Takes the Reins - Becomes PXE International's Second Executive Director
Text of acceptance speech delivered at the 15th Anniversary Gala and Conference, September 10, 2010

May 14, 2010
Desperately Seeking Cures
From Newsweek, why don't more more medical discoveries become cures?

May 13, 2010
Remembering Beverly Foster, A Great Friend of PXE International
A dear and founding supporter of PXE International, Beverly (Fulton) Foster of Needham, MA, died on February 3, 2010.  Beverly Foster helped to birth PXE International and her beautiful spirit continues to remind us of what it means to be generous and hospitable.

May 11, 2010
UK's National Health Service Looking into Avastin As Treatment for Wet AMD
Recent reports from BBC News and the UK's Telegraph regarding Avastin as treatment for wet AMD.

March 19, 2010
PXE International Executive Director Elected a Fellow of the Ashoka Foundation
WASHINGTON, DC – Sharon Terry, executive director of PXE International and president and chief executive officer of Genetic Alliance, was just announced as an Ashoka Fellow, a distinguished lifelong position attained only after a rigorous selection process. Ashoka is the largest association of leading social entrepreneurs in the world that strives to enable the world´s citizens to think and act as changemakers.

February 6, 2010
No PXE After All, But Kudos for PXE International
After his wife Debbie was initially diagnosed with PXE, Dan contacted PXE International to learn more. With PXE International´s help, he was able to determine that she doesn´t have PXE and to get her less serious condition correctly diagnosed. Dan now wishes to share his experience with the PXE community. All names here have been changed to protect privacy. 

November 2009
Embrace the Change
A letter of encouragement from Jan Nesset, a PXEer from Canada, to his fellow PXEers

November 6, 2009
Disruptive Women in Health Care:  November Man of the Month - Patrick F. Terry
In November, the Disruptive Women in Health Care blog welcomed PXE International´s co-founder and President Patrick F. Terry, a self-proclaimed “JAD” (Just a Dad), as their Man of the Month.

August 6, 2009
Arizona Department of Economic Security: A Resource for Low Vision Tools
PXEer Charlie Harper's story of how he overcame reluctance and suspicion to ask for low vision assistance from the Arizona Department of Economic Security.  He's really glad that he did.  Learn how he got Department-supplied low vision aids as well as counseling and instruction.

September 9, 2008
High Technology for Low Vision
Low vision doesn't have to mean darkness and dependence.

July 1, 2008
Francis S. Collins Receives AARP's Andrus Award
The AARP Andrus Award is named in honor of its founder, Dr. Ethel Percy Andrus.  Her philosophy: to serve, not to be served.  Dr. Collins' work, achievements and leadership will serve generations to come.

June 25, 2008
Downi Creations
PXEer Donna Moore, a former special needs teacher who became close to Tim, a young boy with Down's, became disabled herself when a rare eye disease, pseudoxanthoma elasticum, rendered her legally blind with no central vision.  Unable to continue in her career, she says she felt a "God-sent" drive to create a Down's doll.

November 1, 2007
PXE International Develops Genetic Test for PXE
After almost eight years of work, PXE International brings you the genetic test for PXE!  Partnering with GeneDx, a laboratory in Gaithersburg, MD, we are delighted that we are able to finally offer this test. 

Fall 2007
Give Sorrow Words
"I took it literally and I gave all my sorrow words. I cried. I laughed. I sighed sighs too deep for words...And when it was done, when I had come back here to Sedona, I slept a deep sleep. And I could feel the weight of this thing go. I could wake up again, not every day, but on some days as if I had wings on my soul."

February 2007
Advocacy Groups as Research Organizations: the PXE International Example
Advocacy organizations for genetic diseases are increasingly becoming involved in biomedical research, particularly translational research, in order to meet the needs of the individuals that they serve. PXE International, an advocacy organization for the disease pseudoxanthoma elasticum, provides an example of how research can be accelerated by these groups. It has adopted methods that were pioneered by other advocacy organizations, and has integrated these along with new approaches into franchizable elements. The model has been followed for other conditions and has led to the establishment of a common infrastructure to enable advocacy groups to initiate, conduct and accelerate research.

June 28, 2006
'Bon Bon Bellevue' Tackles Rare Disease
"Bellevue United Methodist Church will be filled with the sweet scent of desserts tomorrow night, but the event is not all sugarcoated."

April 1, 2006
The Advocates
In 1994, Sharon and Patrick Terry's two children were diagnosed with PXE, which is characterized by calcification of elastic fibers in the skin, arteries and retina. PXE affects the cardiovascular system and gastrointestinal tract and is frequently associated with loss of vision owing to macular degeneration. The accomplishments that can be attributed to the Terrys in the wake of this unhappy news are remarkable.

November 15, 2005
PXE International's Sharon Terry Receives Honorary Doctorate
“Iona College of New Rochelle, NY, recognized PXE International Executive Director, Sharon Terry for her outstanding contributions to genetic research and the mission of Iona College with an honorary doctorate on November 13, 2005.”

June 27, 2005
Creative Worker Copes with Disease's Effect on Eyes
“She walks around Paper Moon, amid its shelves filled with rubber stamps and rows of ribbon, with ease.”

June 14, 2005
Point and Shoot Game
“Wende Columbo's friends will say she's good. They'll tell you she's better than them.”

August 24, 2004
U.S. Patent Office Issues First Gene Patent to Patient Advocacy Group
“PXE International, a patient advocacy group representing over 3,000 patients and their families around the world, today announced that they have been awarded a landmark patent by the United States Patent and Trademark Office.”

September/October 2003
Learning Genetics
Finding sparse, uncoordinated research on their children's rare disease, a couple starts their own organization to jumpstart hopes for the future.

November 1, 2001
Who Owns My Disease?
"After their children were diagnosed with a rare inherited disease, Sharon and Patrick Terry set out to find the gene that causes it. In the process, they are redefining the role of patients in the genetics revolution."

September 1, 2001
The Citizen Scientists
United by the Net and emboldened by their numbers, parents of desperately ill children are funneling millions into research, building vast genetic databases, and rewriting the rules of the medical industry.

February 24, 2001
Patient Power
“People with inherited diseases are ready to challenge pro-lifers over the future of medical research.”

October 19, 2000
Tissue Donors Use Their Influence in Deal over Gene Patent Terms
"A genetic disorder is at the heart of what is believed to be a first for the intellectual property world.”

September 15, 2000
Crusade for a Cure - Battle for Gene Control
“At first glance, the Terry family of Massachusetts doesn't seem either formidable or unusual.”

June 2, 2000
UH Discovery May Cut Heart Disease
“Mutations that cause a rare genetic disorder have been discovered by an international research team led by a laboratory at the University of Hawaii.” 

May 8, 1999
McCallister Feasts as Wife Dines
“One would think it would be difficult to maintain focus on something as insignificant as chasing a little white ball around a well-manicured lawn if your wife of eight years had gone blind from a hereditary condition that strikes one in 100,000 people.”

April 6, 1997
Diving in Against a Disease
“When Sharon Terry took her daughter, Elizabeth, to a dermatologist for a slight skin rash on her neck, she expected the doctor to tell her to stop using inexpensive detergent.”

February 28, 1997
Advocacy Begins at Home
“Last year, when Ian Terry was 6 years old, he sauntered into a crowd of doctors at a major medical conference in Boston, handed them a page of information, and asked, “Are you familiar with PXE?"

December 26, 1996
Christmas Tree Sales
"After buying a tree at the EP Lions´ tree sale held to raise money for PXE International, a local family poses for a photo with Santa and the Lions´ mascot."

September 1, 1996
Blindsided
“It was the best of times. It was the worst of times. It was The Petersburg Times, and I couldn't read a doggone word of it.”

July 1, 1996
The Terry Family, Volunteers
“It's not unusual for volunteers to put their heart and soul into Brigham and Woman's Hospital. But Patrick and Sharon Terry -- parents of Elizabeth, 8, and Ian, 6 -- are investing their time and energies in a deeply personal way.”