Building our iSACRA Support Organization

This organization is a new one, just over a year old and already with over 300 members. Our next step is to acquire nonprofit status so that we are an official organization. Taking that step means we will need to raise money to make it an official nonprofit organization.  You have the opportunity to get in on the very beginning, so you can know that you made an impact in helping us achieve that goal. While we can't take money right now, because we have not filed the paperwork yet for nonprofit status, we can recieve your pledges. There are many expenses to incorporate as a nonprofit and it is a complicated paperwork process, but we are determined to become an official organization no matter what it takes.  If you would like to pledge an amount to support us, please email us at

A Summary of Benefits for iSACRA

Short term goals include:

  • Continuing online support through the Facebook group
  • New website containing a clearinghouse of information related to CRS/SA
  • Fun things like bracelets, pins, and car magnets
  • Newsletters (online, print, or both)
  • Other publications for new parents; publications to educate medical professionals and encourage them to refer new parents to us
  • Mentoring of new parents; mentoring of children with CRS/SA by older children and adults with CRS/SA
  • Grants-in-aid for medical care, surgeries, and adaptive equipment
  • Regional meetings of group members


Long-range goals include:  

  • National meetings. Eventually, we want these meetings to include doctors who specialize in areas related to treatment of people with CRS/SA.
  • Scholarships for students with CRS/SA
  • Translations of informational packets into various other languages
  • Medical advice through a Medical Advisory Committee
  • Funding for research about what works in treating people with CRS/SA—what works in orthopedics, urology, etc.


We think this organization has a lot to offer its members. We encourage your feedback and any help anyone can provide. Thanks!

Your iSACRA Board