Editor’s Letter July 2016
This July 2016 marks the third anniversary of the very first edition of Angelman Today. The international reach and circulation of the magazine has been astounding, especially considering the topic of a rare neuro-genetic condition. This year we began publishing quarterly and strive for every edition to be better than the last. We want to provide you the reader with latest global news regarding Angelman Syndrome. As many of you may know, most Angelman organizations are run by fellow Angel parents and as parents and caretakers can only understand how difficult it is to carve out the time from our families and most importantly our Angels that require constant supervision.
It is the passion that has ignited our efforts to raise our voices, fundraise for scientific research and stretch our figurative hands across the globe to connect and share this information with you, the reader, the parent, the caretaker, the physician, the student researching AS, and the scientific researcher. Yes, I have been contacted by all of them. I have responded to your emails and international phone calls.
I am absolutely tickled when I have received emails from France, Australia and New Zealand in the same day. As a parent to a child with AS, understanding his condition was rare and never knowing if I would meet another family that could share my experience. It truly gives me joy!
In every edition I do my best to pass my joy onto you. Collectively, we have created the magazine that I wished was available that lonely day my son was diagnosed.
Summer is in full effect here in Florida, I hope you all are enjoying the weather where you are. Make sure to stay hydrated. In this edition we have some practical tips to avoid dehydration. I have found this to be very important for my son Nathan (AS del +), who will dehydrate easily and body temperature will rise without illness. Bright red lips and red ears are signs that I notice with Nathan when I need to increase his electrolytes.
Enjoy this edition of Angelman Today and I also invite you to participate. Send me a topic that you would like us to cover, send me your family story, include pictures or refer us to a newly diagnosed family that you just met.