Blog Archives

Shauna’s Speech at RFR 2016

We are so thrilled to be paired with Running For Rare for the 4th year! I can’t explain it any better than Shauna did last year, so I am sharing her speech for those who were not there. Her words

Posted in Uncategorized

Shauna and her rare disease – Rothmund-Thomson Syndrome

Shauna's first RFRD Marathon

I’d like to start with a heartfelt Thank You to the Running For Rare runners, patient partners, volunteers, NORD, UDN and everyone else who is involved in this community. Our family has made so many friends and bonds in these

Posted in Uncategorized

Shauna – Rothmund-Thomson Syndrome

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Meet Shauna – Rothmund-Thomson Syndrome How do I describe my own child?  Obviously a little on the bias side, but here goes! Shauna is a blessing that came into our lives 9 years ago!  She is extremely inquisitive and I

Posted in Patient Stories

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