Friday started with a welcome from PHRF President, Audrey Lapidus. Please see a recap of the day in the video below.

Families had the opportunity to participate in several studies during the conference. Below are the studies that are open for those who weren’t able to attend to participate in as well!

Gut Microbiome Study – For more information on how to participate click here. The deadline is July 25.

Anesthesia Study – For more information on how to participate click here. The dead line is July 31.

Skin Cell Biopsies – For more information on how to participate click here.

Families also participated in a 3D Facial Recognition study that is being funded by the National Institute of Health. Dr. Ophir Klein and several other doctors and scientists are carrying out an international study to better characterize genetic syndromes that include craniofacial abnormalities. The aim is to develop a system to help physicians diagnose rare disorders in the future.

Let’s Talk About Poop by Audrey Lapidus – Slides from the presentation here.

Future Planning by Allycia Wolff – Slides from the presentation here. See the video below.

The moms and dads enjoyed the breakout sessions where we were able to talk about the highs and lows of being a special needs parent.

We ended the day with a wonderful Sibling Panel, where siblings took questions about what life has been like having a special needs brother or sister. This was a favorite for many people! Thank you to these wonderful siblings who opened their hearts to us. Oliver Vikbladh (far left in the photo below) was the moderator of the sibling panel and is brother to Vera, a young lady with Pitt Hopkins syndrome in Sweden. He shared with us a really moving story about his life growing up. To hear the podcast of this story (previously recorded) click here. He starts at 14:04.