Thursday, 11 September 2014


Im really sorry for posting this here again but  we are trying to sell charity T-shirts to help children with IP, .

Please Help Us Help IP Families. Incontinentia Pigmenti (IP) is a Rare Genetic disorder with NO Cure and Not many answers. IP affects the skin, teeth, eyes, hair, nails and central nervous system. All funds raised from the sales of these T-shirts will be used exclusively for the funding of a much needed IP BioBank. Your order will give Families affected by IP HOPE for their Future. 

Incontinentia Pigmenti is a Rare Genetic Disorder known as IP and all those who it affects are IP Angels. Babies are being misdiagnosed, mothers are losing pregnancies and some infants have gained their wings. This rare disease is unpredictable and the heartache it causes is indescribable. 

Skin Rashes and Blisters ~Hair Loss, Thinning and Coarseness ~Misshaped and Missing Teeth ~ Blindness and Complete Loss of Eye(s) ~ Learning Disabilities ~ Fine Motor Delay ~ Seizures ~ Strokes ~ Tumors Under Nails and Ridged Nail Beds ~ Bone Deformities ~ Heat Intolerance ~ Immune Deficiencies ~ Central Nervous System Defaults and much, much more. 

IP can affect every skin cell in the body. IP is the located on the NEMO gene. The NEMO gene is the gateway gene to every birth defect. IP attacks the X a girl is XX a boy XY and with out one healthy X life is not possible. 

IP is usually fatal in boys and some girls have also passed because of IP. We do not have many answers medically for this disorder and there is No Cure. Our little ones, teens and IP adults have a 50% chance of passing their IP on and there is no way of knowing how IP will affect each generation. IP is also brought about spontaneously which is when there is NO Family History of this disorder which is then called a spontaneous mutation of IP.
An IP BioBank will offer new hope to startups, researchers and patients.
An IP BioBank is a future for IP bringing much needed Answers and Hope for a CURE! 

IP Family Dreams can come true with an IP BioBank

"The Incontinentia Pigmenti Genetic Biobank (IPGB) the Human Genetics Laboratory at IGB-ABT CNR in Naples ( is a largestcollection (to date 387 DNA samples are stored) of DNA and clinical data from patients with Incontinentia Pigmenti. The financing will allow us to build all tools to validate the DNA BioBank. 
The IP BioBank would be a great opportunity for:
• all patients who, in other parts of the world can be incluse new therapeutic clinical trial project;
• all researchers who, in other parts of the world are working on this type of disease, but do not have access to a sufficient number of cases." 

To learn more about IP and our foundation (IPIF) please visit us at

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