It was June of 1997 when we first met Bob Mumford. Mr. Mumford works for Hamilton Standard, the company that produces the space suits for NASA.
We came to meet Mr. Mumford because his wife read an article in the Ladies Home Journal about XP and she suggested that he might be able to help in some way. We spoke about the possibility of developing a suit for XP patients that will allow safe, inconspicuous protection from UV. We were particularly interested in providing protection for daytime travel between home and a doctor visit or school.
We invited Mr. Mumford to Camp Sundown where he and a coworker, known as “Dr. Flush” for his involvement in the design of toilets for space capsules, presented an educational and entertaining description of life in spacesuits.
This visit also provided an opportunity for them to share thoughts with parents and patients about how a suit might be designed to maximize UV protection without the wearer seeming to masquerade as an astronaut. We discussed neutral shades, design concerns, assurance of UV prevention, and “play-proofing.”
In October of 1997, NASA released a prototype of a garment made of spacesuit materials that was tested to have a very high level of UV protection and included an internal cooling vest made by another NASA contractor.
They had been developing this suit at the Johnson Space Center since January of 1997 at the request of a family in London with two small boys who suffer from polymorphous light eruptions (a sun sensitivity behaving like an allergy that causes a rash following exposure to UVA). NASA knew nothing of our efforts nor of Hamilton Standard’s involvement and we knew nothing of their project.
XP patients have a serious concern for exposure possibilities that could cause irreversible, cumulative damage to the DNA — leading to cancers. What may be adequate for one condition is not necessarily adequate for XP.
Bob Mumford of Hamilton Standard (manufacturers of spacesuits for NASA) understands the needs of the XP patients and the concerns of the families. He reported a third prototype of a suit which has several improvements, including lighter weight and self-contained cooling.
The position of the XP Society is to promote 100% protection as well as to share information about products that may be useful but are not yet perfected, allowing individual families to make informed choices.
It is wonderful that an organization as big as NASA is thinking in terms of helping XP patients through their technology and equipment. Hopefully, in the future—with the generous help from persons such as Bob Mumford at Hamilton Standard—that there will be an outfit designed for the specific needs of XP patients. Until then, please review the XP Society position on this subject.