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Fellow Fighter Destiny-Neurofibromatosis by megse5 Patient Expert Posted Wed 20 May 2009 12:08pm 2 Comments “My daughter Destiny is 9 and she has Neurofibromatosis (Nf). All I do is tell her story and I spread awareness to whoever will listen. You would be surprised how many doctors and nurses that don't know what Nf is for instance here is my daughter's story. Destiny was 10 months old when she was trying to walk. She took 2 or 3 steps and ... Read on »
Part 2 Autism and Redheads - The Canaries in the Epidemic by Kim S. Patient Expert Posted Thu 24 Jun 2010 12:00am By Teresa Conrick In Part 1  (HERE) , we learned that Autism appears to have a melanin connection with Parkinson's,  Amyotrophic Lateral Sclerosis, Alzheimer's, Melanoma, Tourette's, Dystonia and Schizophrenia.  Melanin appears to be lacking or not functioning properly thus causing quite possibly, the motor disturbances ... Read on »
Fishing For Answers - Melanin, Mercury and Autism? by Kim S. Patient Expert Posted Wed 18 Aug 2010 12:00am By Teresa Conrick Believe it or not, I like FISHING.  It may be from the memories of being a young girl with my family on vacation, the chain of northern, Wisconsin lakes, or the hope that the next one will be "the BIG one."  Autism research on the Internet is very much like fishing for me.  I can throw out all sorts of ... Read on »
Tuberous Sclerosis Complex and the Kidney by Matt S. Posted Sun 06 Sep 2009 12:00am Tuberous sclerosis complex (TSC) is a rare genetic disease, caused by mutations within one of two genes (TSC1 or TSC2) which is named for the formation of hard tumors ("tubers") within a variety of tissues, including the CNS, kidneys, eyes, heart, lungs and skin. Often, dermatologic clues can be essential to making a diagnosis; common example ... Read on »
Tuesday, September 22nd, 2009 by peytonsparents Posted Thu 24 Sep 2009 12:00am Two very different faces, right? As Mommy has said all along, I am just an actress waiting to be discovered. Today I got to show off a little when I went for a follow up evaluation at the Baby Steps program at the UC Davis MIND Institute. They like to follow graduates of the NICU to see how they are doing. Of course, I am doin ... Read on »
Avastin for Neurofibromatosis by Mark Levin Posted Wed 25 Jan 2012 2:39am Multiple plexiform fibromas, Schwannomas and accoustic neuromas are a hallmark neurofibromatosis, which condition also presents with other findings and symptoms. It can appear as cafe-au-lait spots and bumps under the skin, or it can lead to complications that include blindness, scoliosis and disfigurement. Fibromas can cause pain and compro ... Read on »
Thalidomide for neurofibromatosis by Mark Levin Posted Sun 30 May 2010 12:00am Multiple plexiform fibromas are a hallmark of type 1 neurofibromatosis, which condition also presents with other findings and symptoms. It can appear as cafe-au-lait spots and bumps under the skin, or it can lead to complications that include blindness, scoliosis and disfigurement. Fibromas can cause pain and compromise other organs. ... Read on »
Gleevec for neurofibromatosis by Mark Levin Posted Thu 28 Jul 2011 8:16pm Multiple plexiform fibromas are a hallmark of type 1 neurofibromatosis, which condition also presents with other findings and symptoms. It can appear as cafe-au-lait spots and bumps under the skin, or it can lead to complications that include blindness, scoliosis and disfigurement. Fibromas can cause pain and compromise other organs. Few tre ... Read on »
Is Your Disease on the RARE List™ – If So, More Bad News! by Chris H. Posted Mon 06 Feb 2012 3:01pm I wonder if people truly understand what it means if their rare disease or disorder is on the RARE List™? Last week, the R.A.R.E. Project and  Global Genes Project , leading patient advocacy organizations representing the rare disease community, issued the RARE List™ , a stunning 65 page ... Read on »
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