Announcing RARE Project’s Newest Program
RARE Meetups and Local Leaders Program We are very excited to announce the roll-out of RARE’s new community support program “RARE Meetups and Local Leaders.” The very first RARE Meetup will be held in the South Orange County area (Southern California) on Thursday, May 31, 2012 from 10:00 a.m. to approximately 12:00 noon. All [...]
What is Loss?
What is Loss? By R.A.R.E. Team Guest Blogger: Vanessa Lemminger, M.A., IMF 68894 Marriage & Family Therapy Registered Intern Death. It’s one of the most taboo subjects. If you ever want to end a conversation, start talking about death. Death and the sadness that occurs afterward, are often met by friends and loved [...]
RARE Patient Stories – ‘Meet Reed!’
Meet Reed! In January of 2011, we learned that our then three and a half year old son Reed has Sanfilippo Syndrome Type A, a rare and fatal Neurodegenerative disease. The disease is very rare, affecting about 1 in 70,000 births. To put that in perspective, according to NOAH, you are seven times more [...]
RARE Patient Stories – ‘Meet Connor!’
‘Meet Connor!’ Connor is a typical 5 year old boy, except, he has a life threatening condition. He loves to play with cars, hang out with his friends, and pretend to be Spiderman. But sometimes the fun times take a back seat when he is home sick with a cold because of his low immune [...]
Christopher – Growing up with Hunter Syndrome
Raising Awareness for MPS II When he was 6 years old, Christopher Dutcher was diagnosed with Mucopolysaccharidosis II (MPS II), commonly referred to as Hunter Syndrome . Remarkably, at the age of 28, Christopher has a dual MBA in Marketing. This is remarkable because many of those affected with Hunter Syndrome can have a significant [...]
Patient Stories of Hope and Inspiration – ‘Meet Matthew!’
‘MEET MATTHEW!’ Imagine your child suddenly lost the use of one or more of their limbs for minutes, hours, even days. Imagine these episodes were often painful. Imagine this mysterious disorder essentially caused parts of the brain to “short circuit”, and affected your child’s ability to learn. Imagine these conditions were permanent, and as an [...]