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Even YOU Can Become Disabled - Why Visitability Is Necessary

mel106
  • By mel106 · New reply April 17, 2014
  • Journal · 14 replies
  • A Wheelchair Wonderland I remember vividly a point in time where I wished desperately that the whole world was in a wheelchair so that everyone could know what my daughter had to go through just to go ...

Turner Syndrome Interview

kitchneralex
  • By kitchneralex · Posted April 15, 2014
  • Journal · 0 replies
  • Hi everyone! My name is Alex Kitchner, and I am a teacher candidate at the University of Wisconsin, Whitewater. I am study Special Education and as an assignment in one of my classes, I have been given ...

Turner Syndrome interview

kitchneralex
  • By kitchneralex · Posted April 13, 2014
  • Discussion in Family and friends · 0 replies
  • Hi everyone. My name is Alex Kitchner and I am a teacher candidate in the state of Wisconsin. I am currently studying special education and for an assignment in one of my classes, I have been given the ...

Richmond VA NFers

Mariahsmom
  • By Mariahsmom · Posted March 24, 2014
  • Discussion in In the news · 0 replies
  • Looking for others in Richmond Virginia or surrounding areas with NF or children with NF. We just started a group to get together and be there to support each other in good and bad times. We will also ...

The Inspire Q&A: Inspire talks with Don Dizon, MD

John2
  • By John2 · New reply March 19, 2014
  • Journal · 12 replies
  • The Inspire Q&A: Inspire talks with Don Dizon, MD Dear members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people who are making contributions to helping patients ...

Our second annual report with Stanford Medical School

Brian
  • By Brian · Posted March 19, 2014
  • Journal · 0 replies
  • We just finished a brand new special report, “Experts by experience 2014: A compilation of patients’ stories”, in partnership with the Stanford University School of Medicine. It is a 31-page collection ...

Hitting a milestone -- 5,000 photos posted already

John2
  • By John2 · Posted March 18, 2014
  • Journal · 0 replies
  • From: John Novack, communications director, Inspire 3/18/14 Dear members, I'm writing to let you know that in a little more than a month, members here have posted more than 5,000 photos. Congratulations ...

5 Influential People of the Civil Rights Movement

mel106
  • By mel106 · Posted March 12, 2014
  • Journal · 0 replies
  • For Disability Awareness Month I’ve put together a list of five influential people of the disability rights movement in the United States. This is just a short list of some people who have made a tremendous ...

The Inspire Q&A: Inspire talks with Kathy Nieder, MD

John2
  • By John2 · New reply February 23, 2014
  • Journal · 36 replies
  • The Inspire Q&A: Inspire talks with Kathy Nieder, MD By John Novack, Communications Director, Inspire Dear members, We at Inspire are pleased to bring you the latest in a series of interviews with people ...

People With Disabilities Have A RIGHT To Make Choices

mel106
  • By mel106 · New reply February 15, 2014
  • Journal · 3 replies
  • There may be some people who wonder how a person with disabilities can decide important things such as which doctor or therapist to see or which facility to go to. I wonder how anybody can take away another’s ...

Introducing Photos for Inspire

Walter
  • By Walter · New reply February 13, 2014
  • Journal · 180 replies
  • Hello everyone, Today at Inspire we’re excited to announce the launch of a new feature, and it’s one that many of you have requested -- the ability to upload photos to Inspire. You can now add photos ...

Cool New Audio-Only 3D Adventure Game

mel106
  • By mel106 · New reply January 12, 2014
  • Journal · 2 replies
  • Attention Gamers: Cool New Audio-Only 3D Adventure Game! I’m not a gamer and even I want to play BlindSide! BlindSide is a terrifying new audio-only adventure game, set in a fully-immersive 3D world you’ll ...

child awaiting mri

mishmash001
  • By mishmash001 · Posted January 11, 2014
  • Discussion in Living with a genetic or birth defect · 0 replies
  • Hi everyone. My son is 4 1/2 years old. He sees several different drs. Hes been diagnosed with epilepsey. Hes got a larger than normal head had an mri scan 1 year ago and had large ventricules ?hydrocephalus ...

New infographic: Inspire Rare Disease Health Communities at a Glance

John2
  • By John2 · Posted January 9, 2014
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 1/9//13 Dear members, I am writing to share with you a new infographic that Inspire published yesterday: Inspire Rare Disease Health Communities at ...

Hydrocephalus

Hydroceph
  • By Hydroceph · New reply January 8, 2014
  • Discussion in Living with a genetic or birth defect · 5 replies
  • Does anyone else have congenital hydrocephalus, but was diagnosed later in life? I am 48yrs old, but was finally diagnosed at 40, when I had a VP shunt implanted. At that time, I had experienced a considerable ...

Hypoparathyroidism and Hemochromatosis

Sparrow33
  • By Sparrow33 · Posted December 26, 2013
  • Discussion in Genetic conditions · 0 replies
  • I have recently completed several months of therapeutic phlebotomy (TP) for Hemochromatosis to get my ferritin levels down below 50. I could only tolerate giving the 500ml of blood very 10 to 14 days ...

An Unstoppable Rare Disease Mom

all4CAID
  • By all4CAID · New reply December 13, 2013
  • Journal · 3 replies
  • Lisa Moreno-Dickinson may not have made Forbes’ list of the world’s most powerful people this year. But that is not going to stop her from changing the world for children who suffer unbearable pain from ...

Marriage

Brian_Cud
  • By Brian_Cud · New reply December 9, 2013
  • Journal · 6 replies
  • Wife wanted me to move out and I don't know how to deal with it, I'm so alone. I'm afraid I will never meet anyone else. Im afraid I will die alone ...

Thank You, From Inspire

Walter
  • By Walter · New reply December 3, 2013
  • Journal · 108 replies
  • Hello everyone, As Thanksgiving approaches, all of us at Inspire would like to take a moment to thank you for being part of our community. While we wish no one had to deal with the serious health issues ...

Life, Love, and the Pursuit of a Pain-free Night

Khatn
  • By Khatn · New reply November 19, 2013
  • Journal · 61 replies
  • This past week has given me a load of rows to hoe and think about. One week ago, my darling (and she truly is) 2-y-o Maine Coon kitten (don't care if she's 2, she's still my little kitten) came to me ...
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