After writing the last entry, I collapsed in bed to get a whole…um….five hours of sleep before my alarm went off at 6:15. By 7, I was back in the clinic, helping families get to their appointments. This morning was even more challenging than yesterday. Many flights came in during the wee hours of the [...]
Wow! What a great day!
We arrived in Indianapolis yesterday afternoon after a 5 hour ride with some beautiful sunshine, only to have the heavens open on our heads as soon as Rachel ducked out of the car. Fortunately for the rest of us, parking was in the garage and the entry to the hotel [...]
During the past couple of months, have you been keeping up with what FIRST, the Foundation for Ichthyosis and Related Skin Types, has been doing online?
Things are ramping up for FIRST’s 2014 Family Conference in Indianapolis, from June 20-22. FIRST published some new Youtube videos — there’s a long version and a short version [...]
ISG in the UK co-sponsored an “online clinic on skin conditions” that’s taking place this week. It’s still going on, and there are some worthwhile and interesting responses now, but Jennifer and I think that the forum was marred by the inclusion of a hypnotherapist on the panel of medical experts.
In one of the [...]
We are excited to have SooAnn Roberts Pisano join us today! SooAnn is the mother of two boys with two different forms of epidermolysis bullosa and is an active voice in advocacy for those with disabilities.
We’re all guilty of doing it. There might be at least one occasion that stands [...]
Jennifer See’s updates from the FIRST regional conference in Mahwah, New Jersey on August 3, 2013 [...]
Last week, Cookie and Monkey had a wonderful time at Camp Wonder. They got to see some old friends and make several new ones, and had a chance to do things they ordinarily wouldn’t, such as drive a speed boat! But more on that later. For now, I want to share a specific tale about [...]
Thank you so much to everyone who joined my liveblog of today’s FIRST Patient Support Forum / Regional Conference in Dallas. The views (and participation from online viewers) really exceeded my expectations. Some of the discussion in the room was hard for me to follow (at one point three or four separate conversations started at [...]
Rachel’s liveblog of the FIRST Dallas Regional conference is now over, but we have made the full transcript available in a new post.