I've mentioned before on the blog the opportunity we got to be able to attend the Joubert Syndrome conference this past summer in Chicago. I have tried to convey just how much of an impact this trip had on us, but sometimes words are inadequate to describe certain things.
After leaving the conference, Nick and I felt a strong calling to help the foundation raise money so that all families affected by Joubert Syndrome could have the same opportunity to attend the conference. As a result, we committed to raising $10k over the next 2 years.
We are well on our way to reaching that goal through private donations, family, friends, and the proceeds from the Stella & Dot, but we keep dreaming BIG and hoping to far exceed this $10K goal and make a huge impact.
Through a really unique and amazing set of events, we were connected to two amazing film makers who flew up from Southern California to follow us around for a few days and tell our story. The got to intimately see the ins and outs of our lives-the good, the bad, and the ugly. And through some miraculous way, they turned our crazy and unexpected journey into a beautiful story and short film.
Please take a minute to watch our story and help raise awareness for Joubert Syndrome and the foundation.
Please feel free to share this video!!! And thanks for being a part of our unexpected journey!
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Video Credits:
Help families along their unexpected journeys:
jsrdf.org/donate
Learn more about Joubert Sydrome & related disorders:
jsrdf.org
________________________________________
Continue to follow Nick & Anna's unexpected journey at:
nickandannadietzen.blogspot.com
To contact the Dietzen's, email:
annaelyse@gmail.com
________________________________________
Filmed & Edited by:
Shannon & Amanda Hardy
To contact, email:
hardytwinsisters@gmail.com
________________________________________
Music by:
Ben Lounsbury
To contact, email:
ben@faction.global
jsrdf.org/donate
Learn more about Joubert Sydrome & related disorders:
jsrdf.org
________________________________________
Continue to follow Nick & Anna's unexpected journey at:
nickandannadietzen.blogspot.com
To contact the Dietzen's, email:
annaelyse@gmail.com
________________________________________
Filmed & Edited by:
Shannon & Amanda Hardy
To contact, email:
hardytwinsisters@gmail.com
________________________________________
Music by:
Ben Lounsbury
To contact, email:
ben@faction.global
