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Editor’s Letter October – November 2016

IMG_0130-1The last quarter of the year is upon us and it never ceases to amaze me how fast time passes and although I enjoy the rollercoaster of events through the year the rhythm of time seems to slow, allowing me to simultaneously reflect and with eagerness and excitement plan for a new year.
November is Epilepsy Awareness month and I would like to talk a little more about the importance of this. We understand that statistically the majority of individuals with Angelman Syndrome have epilepsy. When my son Nathan was first diagnosed with epilepsy, before the age of 2 (even before the AS diagnosis), the severity of it was never explained to me. In fact, it was rather dismissed as if complications were a rarity. I did not know, but had to painfully learn that my son, who fought so hard to learn to walk and took his first steps at 2 and a half, would lose the ability due to uncontrollable seizure activity for months. A series of epileptic episodes also caused him to have to relearn to drink from a cup. We spent 6 months relearning how to do what most people can do without even thinking about it.
The ultimate lesson that we had to painfully learn was of the potentiality of epilepsy being life threatening. Even after his diagnosis of Angelman Syndrome the risk factor for his already very difficult to control epilepsy was never even mentioned. It wasn’t until we were again in the hospital and the seizures were again uncontrollable and happening one after another. He was hooked up to an EEG, a heart monitor and oxygen monitor. The staff rushed in, his monitor alarms began to sound. His heart rate that was once racing began to drop. I saw the nurses face fill with fear as she moved his entire body from side to side and said to him to “Stay with me”.

Today I am so grateful for having found the low carb, high fat therapeutic diet for Nathan because we now have excellent control of his seizures. Of all of his previous seizure triggers, only one remains. The first sign of illness is the only one that sends my mind back to that day and fills my heart with fear. With each passing illness we are more controlled and moving farther and farther away from seizure activity.
This month, along with awareness of epilepsy and it’s risks, I also need to raise awareness about the solution we have found.

“Complaining about a problem without proposing a solution is called whining”
– Teddy Roosevelt

Lizzie Sordia
Editor-in-Chief

Email: Lizzie@angelmantoday.com
Twitter: @LizSordia

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.

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Lizzie Sordia
Editor-in-Chief

Lizzie@angelmantoday.com
Twitter: @Lizsordia

Editor’s Letter July-August 2015

Celebrating our 2nd Anniversary2We are celebrating our 2nd year anniversary here at Angelman Today! Two years of creating this online magazine that has circled the globe countless times for our wonderful community.

I could not do this alone. A big thank you to the many contributors that send me links, articles and pictures to publish each month. This community is so amazing, if there is something online from a picture to an article they will even “tag” me to bring it to my attention for Angelman Today.

For myself, it has been a fantastic opportunity for my creative expression and to share the information that I have learned from so many amazing parents and professionals that have helped us on this journey and have made my son as healthy, smart and as able as he is.

This new year, we have so much in store! Giveaways, Vacations, Product reviews and video’s! We are growing at a rate in which I cannot keep up, so if you or someone you know would love to help us please send them my way.

Warm Wishes,

Lizzie Sordia
Editor – in – Chief

23 and Me

Editor’s Letter May-June 2015

May is here and many of us in the US are getting ready for the annual walk for the Angelman Syndrome Foundation. This will be my 5th year hosting the walk in Florida. Our family looks forward to it all year.

When my son Nathan was diagnosed at 2 and a half years old, we left the Geneticists office pondering on what she had just told us. She said Angelman Syndrome was rare but I did not truly understand what that meant to the general population of people. Was he the only one in Florida? I remember feeling so isolated.
Fast forward just a few quick years and our Florida walk has grown close to 300 people, my Angelman family.

I was so honored when our walk was featured on the cover of Celebration Life Magazine last year. We have come so far in a very short amount of time. All because of the amazingly hardworking people in this community. Cheers to all of the parents that continue to volunteer their time and efforts raising awareness so newly diagnosed families never feel so isolated, but supported.

Warm Wishes,

Lizzie Sordia
Editor – in – Chief

Editor’s Letter March-April 2015

“Spring has sprung. Here in Florida the flowers are blooming and allergies are roaring. The beautiful weather in spring seems to inspire a sense of renewal and fresh ideas. The shamrocks in the grass always grab my attention for a second glance in hopes of finding a four leaf clover and capturing some good ‘ol’ “Luck of the Irish!”. That was the inspiration for this edition.

I recently had the opportunity to chat with fellow Angel Mama Aisling Cullen from Ireland. I just adore the Cullen twin boys, Zach and Luke from Ireland. They are featured on the cover and in our ‘Angels in Action’ segment. Read about how Aisling describes their personalities and you too will adore them.

May the Luck of the Irish be upon you this St. Patty’s Day and may you find inspiration from this edition and our wonderful community as you continue on this amazing journey.”

Warm Wishes,

Lizzie Sordia

Editor – in – Chief

EMAIL: LIZZIE@ANGELMANTODAY.COM

FOLLOW: TWITTER.COM/LIZSORDIA

FOLLOW: TWITTER.COM/ANGELMANTODAY

Editor’s Letter January-February 2015

Welcome to 2015! A new year and new beginnings. I am an optimist and I believe in infinite possibilities. Every day is a fresh start to get one step closer to your goals, but entering into the new year is the time to create new goals and determine the plan of action.

This time of year is so special because I use it to plan personal goals and family goals. I sat down with my oldest son and helped him set his goals for the year. I also write down the goals I have for Nathan. I include any products or therapy services I want him to start and skills I would like to practice with him.  This could also be a time to consider if the current plan of therapies is as effective as you would like and consider how your Angel is responding to the therapies. A break from therapy can also be included in your plan. I recently had Nathan take a break from therapy for a period of time and I think it has been great for him and our family.

Whatever your goals are for the new year, I wish you all the very best in health and happiness as we continue to work hard on improving the lives of our loved ones.

Warm Wishes,

Lizzie Sordia

Editor – in – Chief

EMAIL: LIZZIE@ANGELMANTODAY.COM

FOLLOW: TWITTER.COM/LIZSORDIA

FOLLOW: TWITTER.COM/ANGELMANTODAY
Great Toys For All Ages At MelissaAndDoug.com

Editor’s Letter November-December 2014

xmas“It is that wonderful time of year again.. I can’t believe it. Time really flies when you are having fun. We love the holiday season. We love decorating the house together, the holiday music (Frank Sinatra Holiday songs are a family favorite), traditional holiday meals and sweet treats. I spend more time in the kitchen this time of year, but I enjoy it.
I am grateful for this past year, it has been full of challenges and achievements. This year Nathan has started to not only use an iPad, but understand and use an app called Touch Chat for (AAC) communication. He loves his iPad! His favorite apps are Disney and Sprout. We have also had some failures this year like potty training. Unsuccessful so far, but we will keep trying. Braden is also doing great. He is getting A’s and B’s on his report cards and received Honor Roll recognition.

I am grateful for all that we have gone through and learned. I know for sure, life is always about learning, some lessons more painful than others, but always learning nonetheless. Tomorrow is a new day and soon, it will be a new year. I wish you all a joyous time with friends and family this Holiday season.”

Warm Wishes,

Lizzie Sordia
Editor – in – Chief
EMAIL: LIZZIE@ANGELMANTODAY.COM
FOLLOW: TWITTER.COM/LIZSORDIA
FOLLOW: TWITTER.COM/ANGELMANTODAY

Editor’s Letter – September – October Edition 2014

Editor picSummer 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 bowl, a seal, and a dog. They are all lined up in front of an instructor behind a desk with the caption “For a fair selection everybody has to take the same exam: please climb that tree.”

The goals for my typical son, Braden, will be different than my youngest son, Nathan (AS del +); but for more than just a school education I try to be mindful of their individual talents or gifts when I write their goals. These talents may or may not be included in the curriculum or be able to be measured or scored. But we can tell by the smile it puts on their faces while they are in action or the lengthened attention span they have developed for that particular activity. These are the hints we get as parents to identifying their genius. It is a journey best traveled at their own pace.

Warm Wishes,
Lizzie Sordia
Editor – in – Chief

“Everybody is a genius. But if you judge a
fish by its ability to climb a tree, it will live
its whole life believing that it is stupid”
–Albert Einstein

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, care takers 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 diets and read about the latest AS research.

Today families are busy with work, therapies, IEP meetings and doing what they can to fundraise for the amazing AS organizations. Angelman Today gives each and every foundation the opportunity to share with parents the great things that money is being used for. We (at Angelman Today) are parents too, so we understand there is not enough time to go to all of the websites and search for information andthat is why we bring it to you in this magazine.

I want to say “Thank you” to everyone for your support and the well wishes as we celebrate our first year! We look forward to many more!

Warm Wishes,

Lizzie Sordia

Editor – in – Chief

Editor pic

Letter from the Editor May-June 2014 edition

919779_10151572939984191_1835653488_oMay is here and many of us in the US are gearing up for the annual walk for the Angelman Syndrome Foundation.  This will be my fourth year hosting the walk in Orlando, Florida.

After my son Nathan was diagnosed, our geneticist handed us some information about AS by the Angelman Syndrome Foundation. I quickly went to the website to learn as much as I could. When I learned of the annual walk that I could host in my area, I had to get involved. I wanted to meet other families and see other Angels. I did not know how I was going to pull it off, but I was determined and when I get determined… watch out!

I can hardly describe the feelings I felt when meeting so many families, hearing their stories and seeing the abilities of the Angels. After my first walk I had this overwhelming feeling of joy that helped heal a small part of me that was broken hearted about the diagnosis. I was happy to raise funds for research that not only is searching for a treatment but is discovering ways to help individuals with AS today, like treating seizures with the Low Glycemic Index Diet.

It is a true blessing when we can take time out of our crazy schedules and get together as a community and raise funds for any AS organization. I hope you all have a wonderful time.

Warm Wishes,

Lizzie Sordia

Editor – in – Chief