On May 1, 2014 Susanne Bross Emmerich after many years of selfless, heartfelt dedication to the IPIF; which she Founded in 1995; has decided to step down as Director. Susanne is staying on our board of the IPIF as Secretary and is very happy with her new position. Laura M Richter who has been a part of the IPIF since it was founded in 1995 has happily accepted the position of President and CEO.
Laura not only will continue to fulfill the Mission for the Foundation which Susanne put into place, Laura also brings with her to the Foundation and our website her Facebook IP Team Members. The IP Facebook Team has accomplished so much already and continues to work on many projects to help all of our current families and those new to IP.
The first IPIF Facebook Group was created by Laura in 2009 and since then the social community has continued to grow. Not only has this given our IPIF families an additional place to connect and share on the internet in a live secure social media platform it has also created many new outreach opportunities for IPIF. IPIF Facebook has hosted an event to help create a IP Awareness Ribbon which was officially announced April 1, 2014. This presence on Facebook has also afforded us the opportunity to collaborate with our other lead IP Communities in IP WORLD and has brought us closer to all of the Rare Non Specific Communities which help us everyday on a broader spectrum.
We look forward to this new beginning for IPIF with all of you.
We thank you Susanne for all that you have done for IPIF and continue to do for all of our families.
We welcome you Laura to your new position with us at IPIF. We are very confident that your fresh ideas, Facebook Community and endless energy will accomplish much for all IP.
Again Thank You,
The IPIF TEAM
The website has been under a construction and will continue to be updated as complete projects and new documents are received. Please email us at firstname.lastname@example.org with any suggestions or if any link is not working correctly.
The IPIF TEAM
EVENT - September 06, 2014
TEAM IPIF - We invite YOU to join in this fundraiser's efforts to help IP.
Worldwide others are sharing a scheduled event to help IP. They are asking for donations and sponsors to support teams who are running in a 5k for our IPIF angels of all ages.
This is an international event just as we are an international foundation. It will make a difference if YOU participate with us.
The more donations and sponsors; the more we can help:
The above will not and cannot happen without the help of our IP families and friends of IP. Our IP Mission is a very strong one set by the founder of IPIF. We will not stop until we have found a CURE. There are no salaries paid to any IPIF board member, team member or family member. Everyone kindly volunteers their time and efforts both families of IP and friends of IP.
- Direct Family Assistance
- Continued Family Support
- Increased Resources
- Continued Education
- Increased Awareness
- Strong, Solid Outreach Programs to Hospitals/Universities
- Direct and Precise Set Care Plan from Conception through all of Life
- IP Research
- IP BioBank
Changes are occurring, breakthroughs are happening but they cannot continue at the pace we need them to without an effort being made by everyone that can and are interested.
Everyone at IPIF hopes this effort will be a success and we will be able to host one annually. Please share the below with family and friends. Let's reach out together and be heard!
We need Help! We need Answers! We need a CURE!
Please Help US Help YOU !
Please Make an Event on your Facebook Profile to help support this Fundraiser or Share this news in an email with friends and family
RESEARCH - CURRENT
English Language Study Research Survey for IP - SurveyMonkey.com
"Hi guys. I'm doing a study into the language of teenage girls, so if any of you could fill out these two questionnaires won't take long, I promise!) then that would be a big help. They are here:
https://www.surveymonkey.com/s/G9H6KDR and the second is here:
15 questions total, thanks in advance!" - IP Teen
Incontinentia Pigmenti Genetic Biobank (IPGB) of the Human Genetics Laboratory at IGB-ABT CNR in Naples is a largest collection (to date 387 DNA samples are stored) of DNA and clinical data from patients with Incontinentia Pigmenti.
IP Biobank will offer new hope to startups, researchers and patients.
- The 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.
FROM - The Institute of Genetics and Biophysics
Group Leader Human Molecular Genetic Lab - Matilde Valeria Ursini, Ph.D. - Naples, Italy
Writes in Part -
"We built up a database of information on genetic and clinical aspects of IP, based on the molecular diagnosis of IP we pursued in 13 years of activity (2000-2013). A collection of almost 400 patients information is made available and publicized on a site dedicated to this activity
(www.igb.cnr.it/ipgb) and linked to the site of our institute (IGB) and, since few days, advertised on the institutional site of the National Research Council, which is the main public research institution in Italy. They decided to publicize our activity because apparently this is the first genetic biobank of a rare disease of the National Research Council!
Patients of our collection are mostly from Italy although 40 additional countries were involved.
Our ambition is to transform the database into a biobank. The construction of a biobank requires some infrastructure necessary to achieve compliance in accordance with EU/USA rules. The main interest in having a biobank is to exchange informations and sample (anonymous) and to have a unique site of informations on all data in the prospect of a wider involvement of clinician/company interested in IP project as for example clinical trials or personalized medicine , etc."
Incontinentia Pigmenti: report on data from 2000 to 2013; Published online Jun 24, 2014 -http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4083330/
For Families Interested in being a part of the IP BioBank Please email
Rare Disease United Foundation -
Patricia Ferland Weltin Executive Director/Founder
"I was able to meet with the newest member of our Medical Advisory Board, Dr. Paul Caruso. He is Olivia's doctor. Yesterday, after Olivia had her brain and spine MRIs, Dr. Caruso went over everything in great detail. I am so impressed by his wish to learn more about rare diseases. He doesn't leave any stone unturned. Truly a gift to the rare disease community. He has offered to read any MRIs for Central Nervous System Disorders of Undiagnosed MRI scans of the brain and spine to the rare disease community for free! If you are interested in a second opinion or think he can help, his contact information is as follows:"
Dr. Paul Caruso
Director of Pediatric Neuroimaging at the Massachusetts General Hospital
2nd Floor, Main Campus, Gray Building
Massachusetts General Hospital
55 Fruit Street
Boston, MA 02114
office # MGH: 617-726-8323
office # MEEI: 617-573-3842
Rare Disease United Foundation -
Patricia Ferland Weltin Executive Director/Founder
"In an effort to coordinate patient-to-patient information regarding rare diseases, the RDUF has created rare disease community groups for each state. We believe this will help those suffering from or caring for someone with a rare disease share the most important information available within each state. Most rare disease patients see several specialists. These groups will be a place to share information by the experts; the patients. We also encourage people to share events in their state. These groups are not only a way to coordinate our care, but they are a way to show our support for other rare disease groups. This is not my disease. This is not your disease. This is O.U.R. (Orphaned.Undiagnosed.Rare) disease.
The link for these groups is below. Please share within your disease specific groups and let's start working together on the issues that face ALL people living with a rare disease" - Patricia F.W.
CURRENT NEWS FROM The French Support Group
"We have run latest June 15 in Lyon, and June 22 in Paris, to raise money for IP.
The weather was wonderful in Lyon, and the youngest ended up exhausted.
We collected 25 000 $.
This money will be used to support families, and fund research projects.
All the best.
SOCIAL MEDIA - FACEBOOK
IPIF IS ON FACEBOOK
IPIF FAMILY LETTERS
- Incontinentia Pigmenti International Foundation - Page
- Ipif IP - Profile - Send Friend Request
- Ipif IP Profile
- JOIN IPIF FACEBOOK FAMILY SUPPORT GROUP
- JOIN IPIF FACEBOOK TEEN SUPPORT GROUP
- IP WORLD Community - IPIF, I.P.ASS.I Onlus & IP Maladie Rare
- IP WORLD Community Group
- IPIF, Incontinentia Pigmenti International Foundation
- I.P.ASS.I Onlus , Incontinentia Pigmenti Italian Association
- IP Maladie Rare, Incontinentia Pigmenti France
FACEBOOK FAMILY & COMMUNITY
- "Hi IP FAMILY!!!! Hope each and every one of you are enjoying this heat with your angels..."our" angels and keeping safe this summer I wanted to share a FB group that I think is pretty AWESOME! The group is called irunformichael. It is basically where runners will run, compete, cycle and etc. in our IP child's name. For us...yes, Cate has IP This also caused her to have a stroke, which left her with a Right side hemiparesis/weakness. Anyways, I signed my girl up on the site and we were matched with a runner names Sarah Cate has been her inspiration and she is really turning out to be Cate's as well. Cate even put on her swim vest/floaties and said, "Mom, this swim is for Sarah." It really pushed her =0) So far, we have a great pair. Our runner is looking at having shirts made (I Run For Catie.) She is going to make matching shirts, so Cate gets one as well. Anyways, I thought this was an AWESOME way to spread IP awareness. For us, it is also spreading pediatric stroke awareness. I can not tell you how excited our runner is to have Catie as her partner. She has really touched my heart.
Anyways, here is a link giving more information:
Special-needs kids inspire running buddies
Your child does NOT have to be special needs. IP alone will work and help spread awareness. This is completely free..
If interested, visit this website to get matched. We got our match in 12 hours. There are over 2000 runners on a list waiting for an inspiration, for OUR inspiration! MATCH ME
Anyways, take care, get awareness for IP, Epilepsy, Stroke, Add/Adhd and many more. Take care all and have an awesome summer!!" - Amanda B.
- "My little girl is 6 years old and she was diagnosed with IP 2 weeks after she was born. She had the blisters come and go until 8 months and it went away! She have most of her teeth, but some of them are very small and sharp. We went for Genetic counseling, but there is no genetic testing available in South Africa. Every day we thank God for his grace!!thank you for this website its amazing! Xxx" - Chantelle E.
- "Hi I just wanted to say a huge thank you for the new IP Teen page, fantastic idea, … has made lots of friends and I can see how happy she is to be able to chat with people her own age. Its given her loads of confidence. Xxx" FB Private