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Angelman Anecdotes – Community Project by Alice Evans
Angelman Anecdotes “The breaking of that awful feeling of isolation is the greatest gift one Angelman family can give to another…. Those of you who will share your experiences will do it because in the Angelman family that is what we do. Whatever problems you have to meet, others not only understand but have found a solution. Whatever road you have traveled, others have traveled before you, so there is no need to travel alone.” Audrey Angelman Audrey and Harry Angelman, Orlando 1993 Whitney and Ashleigh (Sorenson) Evans Family Members: Let’s honor Audrey’s words by making a family section titled, Angelman Anecdotes (of an updated version of Angelman Syndrome from…
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Government Benefits and Angelman Syndrome
By Eric W. Wright, Ed. D. Families often struggle to find the appropriate resources when it comes to meeting the needs of individuals with Angelman Syndrome. I remember nearly six years ago when my wife and I were contemplating selling our house because we were so confused on how we were going to care for our daughter and address our daughters needs related to mobility. Part of me was worried about how we would pay for medication, therapy, diet, and preschool. When the dust of the new diagnoses settled, we started on our path to find resources. This would be a piece of cake, considering my work as a Family…
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The Latest Research for Angelman Syndrome by Ed Weeber Ph.D.
By Edwin J. Weeber, Ph.D. BMC Neurosci. 2014 Jun 19;15:76. doi: 10.1186/1471-2202-15-76. The prospect of molecular therapy for Angelman syndrome and other monogenic neurologic disorders. Bailus BJ, Segal DJ1. Abstract: Angelman syndrome is a monogenic neurologic disorder that affects 1 in 15,000 children, and is characterized by ataxia, intellectual disability, speech impairment, sleep disorders, and seizures. The disorder is caused by loss of central nervous system expression of UBE3A, a gene encoding a ubiquitin ligase. Current treatments focus on the management of symptoms, as there have not been therapies to treat the underlying molecular cause of the disease. However, this outlook is evolving with advances in molecular therapies, including artificial…
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The Secret of Mael: Cartoon about the difference
Le secret de Maël : dessin animé sur la différence The secret of Mael: cartoon about the difference Click to view The Secret of Mael: Cartoon about the difference http://youtu.be/d2sECQDAZG4
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Aromatherapy and Angels September – October 2014
By Shari Caspert, Mom of 17 year old Matthew Aromatherapy: Back to School Essentials For your Special Needs Child, Teacher, Therapists, Aides & You It’s September and it’s time to get organized. Time for our family to get ready to go back to school. IEP’s, backpacks, shoes, clothing, supplies and Essential Oils! As parents of special needs children, we often separate our kids and families as “Special Needs” , however the start of school brings the same issues for everyone in our household. Our emotions, excitement & anxiety are heightened whether we are attending pre-school, elementary school, middle school, high school or college. We are all typical and have the same issues as…
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Poems by Darren Humphries
“We treasure the short time we had with Elijah” – Darren Humphries (Father to Elijah) Elijah Humphries February 2004 – August 2007 As I sit and write, it is a few days after my son Elijah‘s 7th death Anniversary. Elijah was born in 2004 and was diagnosed with Angelman Syndrome (Deletion Positive) in April 2006. Elijah died in August 2007 as a result of brain damage caused by seizures. It has been a challenge for me and my wife Julie and daughter Francesca to learn to live with the death of someone we loved so much. We treasure the short time Elijah was able to share our life together as a family. We are…
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Editor’s Letter – September – October Edition 2014
Summer fun is done and I hope you all had a great time either vacationing or just being home with friends and family, enjoying the warm summer nights. It’s that time of year again. Time to get the kids back to school or begin a new homeschool regimen. This is the time I start to think about goals for my kids in the new school year and have meetings with teachers to ensure we are all on the same page and working together. I also remain thoughtful of a favorite picture that accompanies a wise quote from Albert Einstein, it includes a monkey, a penguin, an elephant, a fish in a…
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Angels in Action – Joshua
Angels in Action By Yvonne Hamrick, Mom to Joshua age 10 Joshua is an artist. He LOVES to paint. Our family is so proud of him for pursuing his passions, and we want to share that dream with everyone. Joshua enjoys painting for others, but mostly for himself. He has been an artist all of his life, and he knew it before anyone else did. We are so glad that we gave him that first opportunity to paint! Not only are Joshua’s paintings a means of expressing himself, but it’s also a great organizing tool for his body. The squishy paint between his fingers and sometimes his toes. Joshua often…
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Magnesium – A Simple Solution For Many Symptoms
Magnesium is one of the most important and vastly underestimated minerals. It is crucially important for optimum health and supporting some o f the following functions: -Activating muscles and nerves -A precursor for neurotransmitters like serotonin -Activating ATP, which supports the body’s energy and mitochondrial function. Many people may be deficient and not even know it. Some symptoms of deficiency are: -Muscle contractions and cramps or twitches -Numbness and tingling -Personality changes -Abnormal heart rhythms -Improper formation of bones and teeth -Insomnia -Irritability -Constipation -Headaches -Reflux -Seizures The Calcium and Magnesium Balance is Vital Calcium must be balanced with magnesium and adequate levels of magnesium are essential for the absorption…
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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 +
