Update

It has been years since I've posted, and in the meantime, we have made a lot of progress with iSACRA. We now have more than 1000 members on our Facebook page and have a lot of great discussions there. I am happy to say that I think we are really helping people. I know how hard it was having a newborn with this syndrome I had no clue about, and I hope that we are easing some new parents' fears through our group.

We have had a few meet-ups as well, are now recognized by NORD (National Organization for Rare Diseases), have started paying for postage when members exchange medical equipment and supplies, have created a flyer describing caudal regression syndrome and iSACRA, and much more! It has really been a dream come true for me. When my son was born, I wished there was such an organization as I have now helped to create!

Introducing the International Sacral Agenesis Caudal Regression Association

I haven't blogged in quite a while, but in the meantime, the International Sacral Agenesis Caudal Regression Association (iSACRA) has been founded. I'm proud to say that I am a founding board member of iSACRA and helped get it started along with several wonderful, very dedicated people.

On June 6, we will be celebrating our second anniversary. Our Facebook group now has almost 650 members! And next week we are having our first really big fundraiser, a 5K in Virginia! I think there are exciting things ahead for iSACRA, and I look forward to continuing to get to know the members.