-
Angels in Action – Taylor
Celebrating the Abilities of our Angels Taylor is working hard in therapy. Pictures provided by Julie Rice, Mom to Taylor, age 3 del +
-
10 Ways to Prepare for Back to School
By Jodi M. Duke, Ed.D. Special Education Advocate www.jodidukeadvocacy.com It’s that time of year again! It is hard to believe that summer is already winding down, and “Back to School” time is upon us! In order to help you and your child with Angelman Syndrome have the best year possible, I’ve assembled a list of 10 ways to prepare for back to school. 1. Create a one-page profile of your child to share with teachers and other school staff. I like to think of what a child would normally tell his or her new teachers during the first days of school and include as much of that information as possible…
-
Letter From The Editor – 2014 Anniversary Edition
This marks the anniversary of the first edition of Angelman Today and the first magazine dedicated to individuals with Angelman Syndrome, their families, caretakers, and anyone wanting to know more about this genetic condition. This year has gone by very quickly, but so much progress has been made. We have partnered with many of the Angelman Foundations across the globe to unite in a single resource that makes it easy for families and those interested in Angelman Syndrome to learn about what life is really like, be inspired by what our loved ones can do, find products and services to help them in their daily lives, support those on therapeutic…
-
Hello Summer!
Hello Summer!! By Sybille Kraft Bellamy “True health starts with fresh fruits and veggies” Summer is the perfect time to enjoy seasonal fruits and vegetables. The LGIT diet is a healthy diet when a high diversity of good quality products are used. No “strange” food! Only real natural food without packaging! Our family, like most of the families who have an individual following the LGIT, eat low glycemic food. The principal difference is the modification of the fat ratio. Max has a higher fat ratio in all his meals in order to obtain the effects of the LGIT. Since mid spring, we have been able to find great fruits and…
-
Healthy Fats – Avocado Tuna Lunch idea
-
The Latest Research for Angelman Syndrome
By Edwin J. Weeber, Ph.D. Learn Mem. 2014 Jan 16;21(2):98-104. doi: 10.1101/lm.032375.113. Activity-dependent changes in MAPK activation in the Angelman Syndrome mouse model. Filonova I1, Trotter JH, Banko JL, Weeber EJ. Author information Abstract Angelman Syndrome (AS) is a devastating neurological disorder caused by disruption of the maternal UBE3A gene. Ube3a protein is identified as an E3 ubiquitin ligase that shows neuron-specific imprinting. Despite extensive research evaluating the localization and basal expression profiles of Ube3a in mouse models, the molecular mechanisms whereby Ube3a deficiency results in AS are enigmatic. Using in vitro and in vivo systems we show dramatic changes in the expression of Ube3a following synaptic activation. In primary…
-
Dr. Anna Larson: A Life-Changing Encounter Leads To A Lifetime’s Inspiration
We’ve all heard stories about unexpected encounters that change people’s lives in profound ways. While not all of us have experienced that kind of event, Dr. Anna Larson is one who has. It came when she was applying to medical schools. A friend mentioned that a couple she knew was seeking a caregiver for their son, Jake Pritzker, a young adult with Angelman syndrome (AS) living in St. Paul, Minnesota, and Anna accepted the task. Once she started working with Jake, it helped focus her future plans on specializing in pediatric neurology and in particular, epilepsy and AS. It is a path she is still pursuing, though her accomplishments are…
-
Eva’s Journey With Seizures And What Her Mom Is Doing About It
By Claire Lerman On the 28th June 2013 our beautiful little 16mth old Eva was diagnosed with Angelman Syndrome. Just 4 months after her diagnosis Eva started with epilepsy and has been in & out of hospital numerous times. All the medications we were given completely failed to control Eva’s seizures. We had read about something called a Ketogenic diet & we were desperate for Eva to be able to try this as a form of medication. After battling to get consent to go onto the diet we eventually had our neurologist’s consent. Eva started the diet on the 4th March 2014 at which point her seizures had ramped up…
-
Summer Time Tips for Water Safety
By Shannon Purcell, AngelMom to Kyle and Swim Instructor Joshua Hamrick featured in the picture, age 10 We know Angels are fascinated with water, let’s have a fun and safe summer! Touch supervision…be within arm’s length of your child at all times Arm floaties, noodles, and inner tubes should not be considered safety devices under any circumstance. A Coast Guard-approved life jacket is always recommended. CPR is a must and saves lives. Anyone with a seizure disorder should always be monitored with one-on-one supervision Make sure your pool is up to code and always make sure a minimum of a 4-foot fence surrounds the pool on all 4 sides and…
-
Angels in Action – Kamaray
Celebrating the Abilities of Our Angels By Andria Sivill, Mom to Kamaray This is KamaraySivill, age 7 from South Sioux City NE riding her new adaptive TRIAID bike she won through the Great Bike Giveaway. Kami is enjoying her summer & newfound freedom riding in the outdoors. Thank you, Bart, Andria & Kamaray Sivill In the previous March-April edition of Angelman Today, we helped to promote The Great Bike Giveaway through Friendshipcircle.org and we are proud to announce a winner from our very own Angelman community!!
