25 De-stressing Mini-Tips


By R.A.R.E. Team Guest Blogger: Vanessa Lemminger, M.A., IMF 68894 Marriage & Family Therapy Registered Intern Are you under stress? Do you feel like you have no spare time to relax? Well, this article is for you.  Here are 25 de-stressing mini-tips that you can […]

Michelle Obama’s Video Challenge: Vote for Prader-Willi Syndrome and Rare Disease


The Foundation for Prader-Willi Research (FPWR) and the Prader-Willi Syndrome Association (PWSAUSA) have entered a video into Michelle Obama’s video challenge to fight childhood obesity.  You can view their video submission and help to spread the word about rare disease by casting your VOTE (everyday) at […]

Two-time Olympic Silver Medal Winner Adam Nelson: A Champion for Hope


Through the eyes of two families affected by a rare disease, Alan Abrahamson, a seasoned writer for 3 Wire Sports, brings to us an amazing story of hope for Sanfilippo Syndrome and Niemann Pick Type C.  In his writings, Alan delivers a realistic view of […]

Tuberous Sclerosis Complex: Tumors in Kaleigh’s Heart


Strongest, sweetest, bravest. Our 2-year-old daugther, Kaleigh, was born with a fighting spirit and a rare genetic disorder, Tuberous Sclerosis Complex or (TSC). TSC causes benign tumors to grow in all major organ systems, including the brain, skin, heart, kidney, lung, and eye. People with […]

Lucca: 1 in 600 with Phelan-McDermid Syndrome


Lucca is 3 years old. We found out a few months before he turned age 2 that he has a very rare syndrome called Phelan-McDermid Syndrome (PMS).  Lucca is one out of 600 people diagnosed with this syndrome in the entire world.  What this syndrome affects […]

Rare Pictures of Hope™ – Submit Your Hope Stories and Photos Today!


When one of our parent advocates re-posted a picture she found with our slogan, “Hope. It’s In My Genes!” we never imagined it would have the effect that it did. There have been more than 700 photos posted to Facebook leading up to World Rare […]

PKU: Remember


Well, my last blog entry was a bit more serious and somber than most of my posts. And like I said, I don’t want to be fake on this blog. I think it’s very important to admit when you are having a difficult time. I’ve […]