Waves of Impact – Making a Difference One Wave At A Time

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Sun, Sand, Surf and Sam!  Several years ago, I had seen news stories about surf camps for children with autism. I even researched them on the internet but found that distance-wise, they weren’t easily accessible for our family until I finally met Joshua Harper, founder […]

Families look to orphan drug development at University of Minnesota

Orphan diseases affect 25 million people in the United States. By Taylor Selcke, MN Daily.com For Michael Zimanske, years of holidays and birthdays spent in hospitals began after a routine kindergarten check-up. The doctor said he wasn’t growing like a normal 5-year-old, and full body […]

National Institutes of Health news that caught my eye this week.

Here are a few NIH related items that Children’s Rare Disease Network folks might find interesting. 1. Share your health experiences with NIH! Information gathered will assist the agency in developing and disseminating health, medical, and scientific information to a broader variety of audiences.  The […]

Save the Date! Conferences of interest to parent advocates!

Here are some upcoming conferences that parent advocates and advocacy groups might be interested in: Gov 2.0 Expo in Washington, DC on September 8, 2009. The FEAST Conference in New York City, NY on October 1, 2009. American Academy of Pediatrics in Washington, DC on […]

Nominate Your Rock Star of Science!

Geoffrey Beene Gives Back®’s hip new campaign, “Rock Stars of Science” (a.k.a Rock S.O.S) is making its mark, and The Children’s Rare Disease Network is proud to be affiliated with this important initiative! Geoffrey Beene Gives Back® teamed up with GQ Magazine to create a […]

A Rare Disease Thriller?


If you like thrillers, you’ll love this article. If you like thrillers within thrillers, you’ll like it even more: http://www.nytimes.com/2009/08/18/health/18tran.html?pagewanted=1&_r=1&ref=health Of course, if you were Jessa Perrin and had Wilson’s Disease (link to http://digestive.niddk.nih.gov/ddiseases/pubs/wilson/) — which affects only one in every 30,000 people — or […]

Searching for a Cure For Duchenne – Patient Perspective Podcast #1


In this first in a series of podcasts focused on rare disease patient advocates, we speak to Debra Miller, president and founder of Cure Duchenne. When Miller’s five-year-old son was diagnosed with Duchenne Muscular Dystrophy, she faced grim news. The progressive muscle loss caused by […]