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!
No comments:
Post a Comment