Instructions in English

This is Gaucher

This is Gaucher is a video campaign to raise awareness of Gaucher disease that highlights the different types of Gaucher and the many faces, ages, ethnicities, languages, and cultures of the people it affects. By sharing your stories and experiences, we hope to empower the entire Gaucher community so they do not feel alone with this disease. Gaucher disease is rare, but it can affect people from every ethnic background. Gaucher doesn’t care what language you speak, what your religion is, or what color your skin is. It can affect anyone and present at any age.

Thank you for sending in your video to participate in this campaign.

For Patients, By Patients

Together we can make change

HOW TO FILM

Please record all video horizontally
Keep your full face in the shot
If possible, film outside with trees or greens
in the background
No music, television, or loud noise in the background
No logos on your clothing or in the background
No trademark items
No artwork in the background

WHAT TO FILM

INTERVIEW

**Please say the following directly into the camera (shot horizontally):

Name, age, where you live (city/state/country), type of Gaucher (type 1, 2, or 3), or type of Gaucher your family member has/had.
SAY “This is Gaucher” multiple times with different inflections (we will choose the best version).
How you are currently feeling. If you are filming for a family member who has passed away, please tell us how old he/she was and when he/she passed.
What are some of your symptoms now or when you were first diagnosed?
Tell us your story as to how you were or your loved one was diagnosed. We know this can be lengthy, that’s ok! Someone might be going through the same thing.

ADDITIONAL FOOTAGE

**Please have someone else record you (and your family) doing the following (shot horizontally)

Walking around your area (with your family and pets) (3 different places for a minute)
If you work, have someone film you at work doing multiple things (up to 4 minutes)
Something medical – getting an infusion, taking your medication, sitting in a doctor’s office, going through your list of supplies

HOW TO SEND US YOUR FOOTAGE

After you film your video(s), please click on the link below and upload your footage

https://www.dropbox.com/request/dbKCF2QalF2EQTOsfc6k

After your footage has been uploaded you will receive a confirmation email.

If you have any questions about what to film or have trouble using this link, please email jill@gauchercommunity.org. We look forward to receiving your information!

Thank you for your time!

By submitting footage to the link above or via email, I hereby grant permission to the Gaucher Community Alliance to use: video and/or digital images of me for use as part of any future publications, brochure, or other printed or electronic materials, or websites used to promote GCA or Gaucher disease awareness, and further that such use shall be without payment of fees, royalties, special credit or other compensation. I further agree that my name and identity may be revealed in descriptive text or commentary in connection with the image(s). I authorize the use of these images without compensation to me. All videos and digital reproductions shall be the property of Gaucher Community Alliance.