A letter from the Executive Director:

An event has occurred that many of us have been dreaming about. The gene that causes IP has been isolated. I would like to elaborate on how this remarkable achievement came about.
In the Fall of 1994 a baby girl covered with blisters was born into my extended family. She was misdiagnosed with an infectious disease, treated aggressively with incorrect medication, and was looked after by parents who were emotionally devastated. It took 4 more months to get a correct diagnosis. Finding accurate information was extremely difficult, finding a support group impossible. I made a promise to that baby that when she was old enough to have her own children, the mysteries of IP will have been uncovered, and she would not have to suffer the experience of her parents. I began by creating the National Incontinentia Pigmenti Foundation Inc.
With the identification of the gene, half of my promise has been realized. It would not have been possible for one person alone to accomplish the goals that I set for the Foundation. I would therefore like to acknowledge all those who helped me make this promise come true. To simply say thank you is hopelessly inadequate. The lives of so many people will be profoundly altered by this discovery.
I will begin with the International IP Research Consortium (IIPRC). A list of the members is on this site. This group of truly remarkable people worked together in a unique collaboration. Many consortiums exist, only to fall apart through competitiveness, lack of cooperation, and petty antagonisms. But the IIPRC is outstanding in several ways. Its members are a group from different educations, backgrounds, different nationaltities (7), and disciplines, who have bridged the multiple geographic, language, and intellectual barriers to work on one focussed problem: the genetic nature and cause of IP. They question each other respectfully, each accepting the challenge of his or her work assignment with equanimity and humor. For years the IIPRC met over a weekend every six months, many traveling thousands of miles. In between meetings there was always a flurry of e-mails sharing information, theories, results, etc. Many dead-end paths were encountered along the way, disappointing results taken in stride, theories that didn't pan out, etc. Through all this not one person ever thought or spoke of giving up. All those who benefit from their extraordinary efforts and eventual success can never know the full extent of their dedication.
The second group, which is vital to this effort, are those who participated in the research. The adults with IP, parents, children and extended family members who agreed to share clinical information and send samples of their blood to the consortium lab nearest them, were invaluable. No research could have gone forward without being able to examine and study this group.
Another vital component is money. How do we express adequately our gratitude to those who have contributed financially, or who have assisted in raising funds, thereby having made the above achievements possible. The Foundation funds its own expenses which are becoming considerable, even though no salaries or rents is paid. There are the costs of the telephone, printing, postage, etc. The Foundation funds researchers in England, France and the clinical department of the research lab in Texas. It also pays for many of the expenses of the Consortium meetings which historically have taken place every six months, but which now occur more frequently.
It is important to remember that this is only Step One. The isolation and cloning of the gene for Incontinentia Pigmenti is a substantial achievement, but is only the beginning of our understanding the impact on molecular genetics, molecular and developmental biology, embryology, and the realistic investment into the understanding of its roles in brain (retardation and seizures), vision (retinal vascular development and retinal detachment), skin (eruptions and scarring), teeth (formation and enamel development), and immunology (eosinophilia).
There are those who must be thanked who do not fall into the above groups. Families, Scientific Advisory Council of IPIF, friends, and countless others who play a continuing and vital role.
We will all continue to work together till we reach to the final resolution. And once again, I thank you all for helping me to keep my promise.

Susanne Bross Emmerich