The Incontinentia Pigmenti International Foundation (IPIF) recently closed its doors when its founder, Susanne Emmerich, retired. While the National Foundation for Ectodermal Dysplasias (NFED) has always served families with incontinentia pigmenti (IP), we especially welcome with open arms all of the families who had been a part of the IPIF community.
“It’s been an honor to work with Susanne over the past several years to transfer IPIF’s information and resources to the NFED,” said Mary Fete, NFED’s executive director. “Our organizations shared a similar vision to provide accurate information and emotional support to the IP community so it was an easy transition.”
The NFED will continue to collaborate with the researchers that Susanne and the IPIF had been engaged with to explore how we can work together.
What is Incontinentia Pigmenti?
IP is one of the 100+ types of ectodermal dysplasia. It is a complex disorder and symptoms can range widely from very mild to severe.
According to Mary Fete, the NFED is excited to offer more in-depth information on IP.
“We expanded the section on our website that is dedicated to IP,” Mary said. “Thanks to IPIF and members of our Scientific Advisory Council, families can now access more detailed descriptions of the various symptoms, stages and treatments. Plus, they can see pictures of typical symptoms thanks to numerous IP families who generously sent photographs.”
Check out our new IP pages to read a comprehensive description of the syndrome, how it can manifest and the best ways to treat it.
How NFED Helps IP Families
We encourage all families affected by IP to join the NFED. By completing, you will receive email updates when new information or IP research opportunities become available. Also, you will get access to NFED’s numerous programs, such as our network of Dental Treatment Centers or Insurance Assistance Program. You can also join our advocacy efforts to get the Ensuring Lasting Smiles Act passed so insurance covers your medically necessary dental care.Join the NFED
Like Susanne, our NFED staff is always just a phone call away when you need information, support or just someone to talk to. We invite families affected by IP to connect with other IP families through our private Facebook group.Join IP Facebook Group
IPIF’s Founding and History
Susanne founded the IPIF in 1995 after her sister’s granddaughter, Gemma, was born with IP the year before. As is often the case with families affected by ectodermal dysplasia, it took a while to get a correct diagnosis. The family had never heard of it and had no idea what to expect, Susanne said. It was mentally and emotionally isolating.
Having just closed her business in 1994, the timing was right for Susanne to take action. She wanted to to do something so that no family had to go through what her family had.
She started cold calling physicians to find people who knew something about the rare condition. After months of hard work and networking, Susanne soon organized an international IP consortium of physicians and researchers who would meet annually in Europe. They shared information on IP and chartered a course for IP research.
She also worked tirelessly to get a copy of every medical journal article on IP that she could find. She would mail the articles to medical and dental professionals as they needed them.
This story is not unlike the history of the NFED founded by another strong woman, Mary Kaye Richter. Both women have contributed so greatly to expand the knowledge on these rare disorders. We continue their work and vision every day.
Supporting IP Families
Susanne said she wanted to provide emotional support no matter where a family was.
I wanted to create a place where they could connect and discuss their issues. I always carried my laptop with me, not matter where I went, in case a new mom emailed and needed me. I wanted to be able to give her right information and support. Moms may be carriers but be asymptomatic. The diagnosis can be devastating and frightening. It’s critical that babies with IP get an eye exam immediately as the retina can detach and cause blindness. I never wanted to miss a call.
After being on call for 25 years, this volunteer was ready to retire. Susanne says she’s most proud of two things.
“I think IP is more well known in the medical community. We were able to raise the profile so that babies are properly diagnosed. I’m also proud of finding the gene which enabled families to have genetic testing.”
Genetic testing meant families could be diagnosed more quickly so parents wouldn’t go through the long waiting that her family did.
Today, her great niece, Gemma, is 25 and doing well. She’s working on her doctorate in psychology.
Mary Fete said,
“I want to thank and recognize Susanne for her extraordinary contributions to our understanding of IP. She dedicated two decades of her life to this effort. You have the NFED’s commitment to continue and expand on this work to find answers and ultimately treatments and cures for IP.”