Every two years the Cystinosis Research Network holds a family conference where families can get together for a few days, attend the many information sessions by leading experts in cystinosis patient care and children, teens and adults alike can have some fun. Sadly we have not had a chance to attend one of these conferences yet as Elsie was not yet diagnosed in July 2013 and this year we just don’t feel ready to travel with Linden so young. Which is very sad because they have put together a really exciting exhibit.
The “Dream, Achieve, Inspire” art show is the first collection of art featuring over 100 artists of varying ages from 30 countries, all with cystinosis. And our own little Elsie is one of those artists! We were happy to be a part of this awesome project to showcase the beauty and creativity amongst some amazing individuals within the cystinosis community. The exhibit also aims to raise awareness in countries where cysteamine treatment is not available to their citizens, and help advocate for access to this life saving medication.
The collection debuts July 16, 2015 at the Cystinosis Research Network Family Conference in Chicago, Illinois at The Magnificent Mile Doubletree by Hilton. It will be available to view until July 18th to the public so if you are in the area please drop by and check out this inspiring collection of work. And If you do, snap a pic of Elsie’s art and send it to me!
If you won’t be in Chicago but really want to view this collection, never fear! After the conference it will become a travelling exhibit with groups in Spain, Brazil, Mexico and the UK already lined up to display it. Katie Larimore, the exhibits chairperson, has committed to keeping the collection moving as long as people want to see it so here is a link to the press release including contact information if you want to see it at your event.
We hope that all of the families attending this years conference have an amazing time and hopefully we will be at the next one!
July 17, 2015 Update: Here is Elsie’s piece!
Elsinosis: Living with Cystinosis 