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Category Archives: Epidermolysis Bullosa
Fourth grader is an inspiration to her classmates
Many of us spend years trying to find a cause to move us to action, and we strive to make a difference. Well Kaelin Thomas is doing just that! At only 10 years old, Kaelin is making a difference in her community and … Continue reading
Posted in Epidermolysis Bullosa
Tagged Advocacy, Awareness, EB, EPidermolysis Bukllosa, Epidermolysis Bullosa
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Rare Disease Day – Spotlight on Harlequin Ichthyosis
In the U.S., any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 … Continue reading
Posted in Epidermolysis Bullosa
Tagged Blessed by Brenna, Harlequin Ichthyosis, Rare Disease Day
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And the winners are…
There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, almost one in ten Americans are suffering from rare diseases. Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, … Continue reading
Posted in Epidermolysis Bullosa
2 Comments
Remembering Tripp Roth
I wanted to share the blog post that I wrote for This Little Light in memory of Tripp Roth as he was such a large part of the inspiration behind this entire project. Today a little butterfly flew by me. I thought … Continue reading
Posted in Epidermolysis Bullosa
Tagged Advocacy, Courtney Roth, Epidermolysis Bullosa, Tripp Roth
6 Comments
Reflecting on 2012 – Epidermolysis Bullosa Awareness and Advocacy
As I reflect on the last year, I think about how this journey began and the opportunities that have come from it. As we enter into this new year, I would like to just take a look back at some of the … Continue reading
Posted in Epidermolysis Bullosa
Tagged Amplatz Children's Hospital, Aubrey, Aubrey's 5K, bone marrow transplant, Easton Freidel, Easton Friedel, Epidermolysis Bullosa, Jakub Tolar, Tripp Roth, U of M, University of Minnesota
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Inspirational stories – Life with Epidermolysis Bullosa
In our lives we will encounter opportunities to do something great, to be a part of something bigger than ourselves. We can choose to ignore those opportunities, or we can embrace them and seek to be better people. I have … Continue reading
In the spirit of Thanksgiving…
As we prepare for Thanksgiving, I wanted to write a quick post to thank everyone for their overwhelming support of this awareness campaign. I never imagined that a little idea and a little passion would ignite a similar passion into others. … Continue reading
Sharing your gifts…advocate and make a difference
Hope, there is always hope. It is something that I firmly believe…and hope, the difference does start with you… In the past I have been asked about what lead me to Pioneering Unique Cures for Kids and the work being … Continue reading
Advocacy, One Year Later…
The last several weeks have been somewhat bittersweet, for it was one year ago that my life took an interesting direction, one that I never could have imagined. It was a year ago when this path unfolded and I am … Continue reading
Posted in Epidermolysis Bullosa
Tagged Advocacy, Awareness, EB Awareness Week 2012, Epidermolysis Bullosa, Tripp Roth
5 Comments
No one planned for this…a personal story of advocacy…
Along this journey, I have had the privilege to meet some amazing people, people who share my passion, people like my friend Andrea Ness. Andrea like me has chosen this path because she was impacted by a life that was cut short because … Continue reading
Posted in Epidermolysis Bullosa
Tagged Advocacy, Andrea Ness, Aubrey Joy Oberlin, Aubrey's 5K, EB, Epidermolysis Bullosa
8 Comments
