Submit a Video or Pictures

Thank you for being willing to share an intimate look at your family's life with us to help researchers see and feel why the work they do is important.

 Sometimes working in a lab can make it hard for researchers to remember why the work they do is important. At our conference at UCLA we are bringing together most of the top researchers in the ASXL field. These videos will help them vicariously experience a day our lives. They can live the good, the bad and the difficult right along with us and hopefully come away feeling inspired and motivated to continue their research to make a difference in our children's lives.

 Please share photos and/or video clips of 5-30 seconds in any of the following categories:

- Mornings (getting ready for the day)

- Learning (school, therapies)

- Daily play (time with toys, siblings, friends)

- Bad days (illness, seizures, tantrums, sleepless nights)

- Good days (moments of joy, special family time)

- Night time (winding down for sleep)

Image and Story Consent Form
Consent agreement
Thank you for being willing to help researchers see and feel why the work they do is important. Sometimes working in a lab can make it hard to remember the why. At our conference at UCLA we are bringing together most of the top researchers in the ASXL field. These videos will help them vicariously experience a day our lives. They can live the good, the bad and the difficult right along with us and hopefully come away feeling inspired to make a difference in our children's lives.

How are images, stories and testimonials used?

First, these videos (and pictures) will be used to help researchers and parents feel connected at the conference. Afterwards, we use images and stories in a range of materials to promote the ARRE Foundation. This includes (but is not limited to) advertisements and publicity materials (leaflets, brochures, posters, direct mail and publications for the Internet). The ARRE Foundation will retain copyright of the image and story as part of materials to promote their work.

How long does consent last?
Consent continues with no time limit. Image and story consent can be changed or withdrawn at any time. We cannot withdraw images and stories already published.

Who can give consent?
Only a parent/legal guardian can give consent.
Consent agreement
I agree to the ASXL Rare Research Endowment Foundation (ARRE Foundation) using the image(s) and/or story and give hereby the ARRE Foundation permission to publish, use and republish the attached material, in whole or in part, in publications which describe the Foundation’s programs, funds and any of its activities as a community foundation.

The said material may include a photograph(s), video(s), stories, quotes and testimonials (written, audio or video recorded).

The said material may be used before a variety of audiences which may include the ARRE Foundation’s staff and directors, current and potential donors and grantees of the ARRE Foundation, the news media and the general public. Publication may appear in newsletters, annual reports, brochures, posters, website pages, social media or other forms of literature, including electronic and print.

I understand that I may withdraw this consent at any time by forwarding such request, in writing, to the ARRE Foundation.