Unlike other ultra-rare genetic deletions, where families are left on their own for information and support, 4p- has an active — super active — support group. This group has been invaluable to us. Without it, I would have long ago pulled out all my hair. And those of you who’ve seen me, especially in the soupy humidity of summer, know that’s a lot of hair to pull out.
But it’s a labor of love, this support group. The president, for instance, does the work completely unpaid, and it’s a full-time job. The volunteer-leaders of this group coordinate regional and national conferences for families, work with leading medical experts to gather data, send out newsletters, connect families, and make their presence known at major genetic conferences, among other things.
So if you feel a little love for Fiona, and feel like spreading it around, consider donating a buck or two, or ten, to the 4p- support group. It’s super easy. They even do Paypal. Then shoot me an e-mail telling me that you did so, and I will give you all kinds of e-mail love in return!
Seriously, don’t be shy about saying, “I spread the love!” It’ll make my day.