November/December 2015

The Good Dinosaur Benefit Screening – November 13th, 2015

A Rare Disease Partnership

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Christine Waggoner, Cure GM1 President, Sweet Iris, and Nicole Boice, Founder of Global Genes

Through a partnership with Global Genes and two other rare disease nonprofits, the Grace Wilsey Foundation, and the KCNQ2 Cure Alliance, we were able to organize a pre-release benefit screening of Disney/Pixar’s most recent feature film The Good Dinosaur at Pixar Animation Studios in Emeryville, CA.

At the end of the post is an album of photos highlighting the event.

Highlights

The evening included a silent auction, a live auction, a kids corner with activities, a balloon artist, a face painter, and 5 animators who volunteered to do drawings for attendees.  The food was also excellent.  The menu had a campfire theme and included s’mores!

Over 200 Guests and 5 GM1 Families in Attendance

There were over 200 guests and many representatives from Silicon Valley and the rare disease community.  Amazingly, 5 GM1 families were in attendance.  That’s actually quite a lot of affected families in one place.  Sara Heatherly, Porter’s mom flew out from Alabama.  Melissa and Bret Horspool  represented their son Zac.  They came all the way from Utah and volunteered at the event.  The Shelton family made a long drive from Sacramento with their son Owen.   We met another Californian GM1 mom whose daughter was just recently diagnosed.

Researchers on the Scene and Documentary Filming Continues!

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Noah Coughlan, Rare disease advocate and extreme athlete came to represent the Run For Rare team.

We were so honored to have Dr. Martin and Dr. Esteves, the heads of the two research teams we have funded in attendance.  They were also interviewed by the Run For Rare documentary team before the event!  We’re hoping to see Sweet Iris’ story and the research highlighted in the documentary when it is completed and released.

Slideshow of Photos Below, Click to see more!

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Extreme Gratitude!

We are so incredibly thankful to everyone who helped make this event possible and we are especially indebted to Pixar Animation Studios.  This was one of the larger events this year and a lot went into it!  Thank you from the bottom of our hearts to our partners and to everyone who volunteered, helped organize, donated auction items, and spread the word!  The event was amazing and we are truly grateful for the incredible outpouring of support!

A Season of Hope

The holiday season is upon us.  November was already such a great month between the screening and the Cure GM1 Triple Play.  The success of these events and all our supporters’ generosity does not go unnoticed!  Furthermore,  a huge amount of funding has already been granted towards intravenous GM1 gene therapy this year.

The fight continues.  To support our mission to fund medical research towards a cure for all those affected by GM1, please donate here.

Thank you and Happy Holidays!

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