Angelman Today January 2016

 

Digital Edition

Resources | Research | Inspiration

CONTENTS NEWS 03. Editor’s Letter 04. Upcoming Events 06. If I Need Help Product And Discount Code 07. Facebook Angelman Cover Contest 08. Life With An Angel 17. The Vitamin Movie (Documentary) 19. The History Of Angelman Syndrome 21. Contributors 22. Child with AS Help Make Soccer Team a Winner

ANGELMAN AND ASSOCIATED FOUNDATIONS 04. CASS - Canadian Angelman Syndrome Society 2016 International Conference 04. The Charlie Foundation’s 5th Annual Global Symposium 05. AFSA French Angelman Syndrome Association 10. Angelman Syndrome Foundation 18. Purple Day Is March 28th 20. Our Partners

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EDITOR’S LETTER

Happy New Year! As we welcome in 2016 I like to view it as an opportunity for a fresh start to pursue new dreams and reassess my current goals. I find this to be very important not only for my personal journey through life but for my family. I create family goals and then evaluate them throughout the year as things develop and life changes.

As a parent to a child with Angelman Syndrome and having met many other AS families, we will sometimes compare our children. This is natural but I want to remind you to quickly move on to the next thought which is that there is a spectrum to Angelman Syndrome. Yes, there are some similarities amongst individuals but it is only one little gene of many.

If I meet an Angel that I am impressed with, my experience has been that the parents are typically more than willing to share with me their “secrete” for success. This has happened for topics that I am most concerned with which are health, diet and communication. I get inspired by their success, learn ways that I can

Lizzie Sordia Editor-in-Chief Email: Lizzie@angelmantoday.com Twitter: @LizSordia

apply those methods to my son’s life, commit to change for the long term (2 weeks do not count as an attempt!), remain hopeful and adjust the method for Nathan’s specific needs.

This is a great time to reassess the treatment plan for Nathan. I have goals for the year, the month and for each day. They don’t have to be complicated. For example: Yearly goals can include working on communication with Touch Chat on his iPad. One monthly goal is swim therapy during the spring and summer. Daily goals are to help his sensory needs, maintain his strict diet and his nightly routine which helps him sleep all through the night.

Take it one day at a time, be flexible. Remember that we can be our own worst critic. Forgive yourself, those around you and go for it! No goal is too big and any new day is a great day to start!

Stay committed to your decisions, but stay flexible in your approach.

-Anthony Robbins

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UPCOMING EVENTS Upcoming Angelman Conference  

Save the Date -- CASS Conference in 2016!

Conference Co-chairs Terry Singleton and Kent Fleming advise newsletter readers that the CASS Board has approved the Double Tree by Hilton in Edmonton as the venue for the 14th International Conference of the Canadian Angelman Syndrome Society, scheduled for 13 to 16 July 2016.

The Registration Booklet PDF is now available to download here.

It is full of information which will allow you to start making plans to attend. It is the work of the 2016 Conference Committee made up of CASS Board Members and CASS Community Relation Committee members led by Co-Chairs, Terry Singleton and Kent Fleming.

International Angelman Day is coming up for 2016 How are you going to raise awareness? Tell us about it a you could be featured in the next edition of Angelman Today

Upcoming Conference

The Charlie Foundation’s 5th Annual Global Symposium on Ketogenic Therapies September 20-24, 2016 For more information visit www.CharlieFoundation.org

Thank you, everyone, for helping to get the word out about your Edmonton 2016 Conference! We look forward to welcoming you to an informative and enjoyable conference.

Please stay tuned to the CASS website for News Flash Updates on this exciting event! www.angelmancanada.org

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Sébastien LOEB,

committed sponsor for the French Association of Angelman Syndrome (AFSA).

Supporting the Cause

Click the link to watch the YouTube video. https://youtu.be/YWQgKP7pbbM For more information visit www.angelman-afsa.org

"I am happy to bring some help to the children of AFSA fighting their diseases. If I can help families to stay positive, I would be fufilled. We spent a lovely day during filming, it was nice to share these moments with Gatien, the team and the association. I give my full support to the AFSA, just like Sébastien Loeb Racing and we will be delighted to welcome the children in the future, on the circuits or other events. " - Sébastien LOEB "Can you imagine a more beautiful relationship, more beautiful friendship for a disabled child than one that he can establish with a great champion, a great sportsman who agrees to look him in the eyes and say," I recognize you, and I will support in your fight? On behalf of all children with Angelman syndrome, on behalf of their parents, family and friends, thank you to Sebastian. " -Denise Laporte, President of AFSA ANGELMAN TODAY | 5

Keep Them Safe.

Free membership to special needs caregiver controlled

Save 5% on your first purchase using promo code: Angelman Today Check out Lizzie’s video interview with the creators of If i Need Help and learn more about this product. https://youtu.be/mmdUmirS5FI

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#AngelmanCoverContest We just wrapped up the Angelman Cover Contest, congratulations to all of the participants!

Everyone played a very important part in raising awareness about Angelman Syndrome.

It truly was a global event. We had entries and votes from all across this planet. Friends and family were sharing and voting daily for those beautiful smiles. Parents had strategized social media campaigns to rally votes.

It was a fantastic way to end the year with some light-hearted fun, awareness and to feel the support from so many people. I noticed in many photo shares on Facebook, people were asking to know about Angelman Syndrome after complimenting the photo. That is what it is all about!

Thank you all for participating and supporting the families that entered the contest. Please let us know about your experience and if you think we should do it again next year in the comment section of the YouTube video about the contest. https://youtu.be/YPYbuU6y3Ws

Congratulations to the Winner Katerina! Just shy of 5000 votes!

We had to select another photo of Katerina because of image size and quality limitations of the original uploaded photo.

Top 3 PHOTOS with most votes

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Life With An Angel

By Efi Paschalidou My husband and I wanted a child more than anything else in the world. After two years of trying we saw the magic line on the pregnancy test. Our joy was unspeakable. But unfortunately my pregnancy was difficult from the start. Placental abruption, hemorrhage, contractions from the 6th month, not being able to feel the baby, prematurity.

We said that it is our child and we would adore it even if something went wrong.

Finally we held her in our arms after many days in the incubator.

Our doctor and the other doctors in the hospital told us that our baby was fine, that she was a little "behind" due to prematurity. It was like a black veil was blinding them and they couldn't see our child's problem.

But something was eating me alive. I feared that something was wrong. Thought I felt the happiest woman in the world. I had a wonderful family and a "healthy" baby.

A “healthy” baby! What a big word!

We thought we were the happiest people on the earth.

I don't know if we are happy but we sure live a lot of happy moments with our children, each one in her own way. We also have a three-year old little girl who adores her sister.

Our heartbreak began very soon, she was only 7 months when we had the first diagnosis.

"Your child has a psychomotor retardation, hypotonic. You should begin physiotherapy".

Those terms were unknown to us. Where should we go, what should we do, how could we help our child in the best way?

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We went to many doctors and heard a lot of things but of course nothing comforting. I was crying all day, I felt like hitting my head on a wall, I wanted to take my child and just disappear. And in my head a big question "God, why us?"

But I had to bring myself back together for my child.

I could see her crying in her therapies but I had to be strong.

I could not stand the fact that I had to see her lying on her bed, unable to move properly, but when I hugged her, I knew that she was my whole life. I was the happiest person on earth.

I couldn’t bear the thought of having to see carefree mothers strolling along the streets, in the parks with their babies, when I was in a hurry to be on time for her therapies.

I felt really uncomfortable when some other parents were talking about their children’s accomplishments, but eventually I realized that what our daughter achieves is the most significant achievement of all.

In June 2010 when our angel was about 2.5years old we received a phone call from her pediatrician neurologist to inform us about the results of a medical test our daughter had. “ something was found, your daughter has Angelman Syndrome.

Come to my office tomorrow to talk about it “.

We were shocked to hear that. Instantly we started looking for information about this syndrome. We were crying reading the relevant information. We thought we had hit the jackpot: a definite diagnosis!

The following day I called my husband from work and told him that after our visit to the doctor, I wanted to go out and have fun together. We should feel happy as we were lucky to have found what the problem with our daughter was. We should stop weeping all day long. We knew what the exact cause of the problem was and we knew what we had to deal with for the rest of our life and we had to do our best to help her. We have an angel with us and we must survive. We must stand this difficulty bravely.

Our daughter is 8 years old now. She deserves praise for her daily improvements. when her school teachers and therapists tell us that she has improved and therapists tell us that she has improved significantly, we take courage and can cope with it.

“You enjoy what you achieve only if you worked hard for it, if you have obtained it after great efforts and sacrifices.” When our angel manages to reach her goals, it is as if she had conquered the whole world These happy moments are the reason why we don’t give up and give us great strength in these difficult moments.

So many people wonder what it is like bringing up a charismatic, special child. Yes, it is true that it is difficult sometimes, unexpectedly difficult, it is beyond us. Through her eyes and her smile we can take courage and become patient enough to keep going. We may feel that we are in a dead-end, disappointed at times but we always manage to endure.

Disability is not an infectious disease. Disabled people are the real fighters. The only thing they are asking for, is acceptance. When you meet such a charismatic child do not avert your eyes, do not take your child away from her or him at school, or in the playground.

Let your child play with our charismatic child. Do not send them away.

You can be taught a lot by a disabled child. You can learn what the real purpose in life is.

I believed that I had to teach my child a lot about the world, but now I know that I have to learn the world about my child.

I would like to thank, from the bottom of my heart the magazine, which gave us the opportunity to publicize this syndrome and make it known in Greece.

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Worldwide FREE online screening of the complete documentary January 1st - January 14th www.ThatVitaminMovie.com

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Purple Day is March 26

Supporting Epilepsy Around the World!

For more information visit

www.purpleday.org

Sibling Love And Support Some of our Angles’ very best friends!

The History of Angelman Syndrome

Dr. Harry Angelman was an English physician who identified what is now known as Angelman Syndrome.

Dr. Angelman was born in Birkenhead, England. He was an enthusiast for the language and country of Italy.

He first observed three children who were unrelated but showed similar symptoms of severe intellectual delay, stiff, jerky gait, lack of speech, seizures, motor disorders and happy demeanors.

Then, while vacationing in Italy, he observed an oil painting called… A Boy with a Puppet by the renaissance artist Giovanni Francesco Caroto at the Castelvecchio museum in Verona.

Dr. Harry Angelman 1915 - 1996

Reminded of the children, Dr. Angelman published a paper in 1965 that described what he called “puppet children”. At this time, his paper was not immediately recognized as important.

It wasn’t until 1982, when Charles A. Williams and Jaime L. Frias of the department of Pediatrics, Division of Genetics, University of Florida College of Medicine, Gainesville submitted a paper to the American Journal of Medical Genetics reporting studies of six patients and comparing their data to those from previous reports – severe developmental delay, “puppet-like” gait, craniofacial abnormalities, and frequent episodes of laughter that it became clear the syndrome was more common than previously thought.

They proposed the name of this disorder be changed to Angelman Syndrome.

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Our Partners - International Angelman Foundations Together, we can bring you the latest information in one easy resource.  

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CONTRIBUTORS  

Editor in Chief Lizzie Sordia Assistant Editor Marilyn Kennedy Nutritionist Sybille Kraft Bellamy Additional Contributors Efi Paschalidou Suzie FitzGerald Alfred Santos Hector Garcia

All Of The Angelman And Associated Foundations The Charlie Foundation CASS - Canadian Angelman Syndrome Society AFSA -French Association of Angelman Syndrome Purple Day

Sponsors If i Need Help www.IfiNeedHelp.org

/AngelmanToday

/AngelmanToday

/AngelmanToday

/AngelmanToday

KayserBetten Secure Sleep Systems www.KayserBettenUS.com SoSecure www.SOSecureproducts.com

Angelman Today

STAY CONNECTED ANGELMAN TODAY | 21

Child with AS Helps Make Soccer Team a Winner Even casual sports fans know that college athletics are a Big Deal. But by their very nature, they offer little access for people with disabilities.

Unless you’re like ten-year-old Drew FitzGerald of Cleveland, Ohio.

Thanks to a relatively new organization called Team IMPACT, Drew’s diagnosis of Angelman syndrome was no barrier to becoming part of college sports. He has been welcomed as an official member of the men’s soccer team at Notre Dame College of South Euclid, Ohio.

Drew and his family couldn’t be more excited about it.

Drew’s parents, Suzie and Brian, heard about Team IMPACT from friends who have two children with cerebral palsy, and they saw it as a great opportunity for their son. Team IMPACT matches children with disabilities to college teams seeking the chance to help kids become part of something bigger than themselves— something to help them through the challenges they face daily.

“Getting involved was very easy,” said Suzie FitzGerald. “The online application was easy to fill out. Team IMPACT really tries hard to find the best fit for each child, including geographical proximity, so that can often take some time. But it was not a lot of work at all.”

After the match was found at nearby Notre Dame College, Drew was treated as a star recruit and was welcomed to the soccer team with as much fanfare as a prized, big-time recruit.

“They made a big deal out of the ‘signing,’” said Suzie. “The ceremony was in the college’s student center. They had the athletic director and president of the college there. All the coaches and players were there. We had Drew’s grandparents and cousins come, too.

College officials gave speeches about how excited they were about this. They even had a letter of intent for Drew to sign. And they gave him a jersey with his name and number on it. The college even put out a press release about it.”

Drew’s younger brother Peter, age eight, was just as excited about it as Drew himself, Suzie said.

Drew’s tenth birthday was also cause for a team celebration.His birthday coincided with a home ANGELMAN TODAY | 22

match, said Suzie. “The stadium announcer introduced Drew as part of the team, and he went out on the field for the coin toss with the captains. It was great.”

There was a special birthday celebration following the game, too. “The guys have been fantastic,” Suzie said. “It’s a really nice group of guys, and Drew was going crazy at his birthday celebration.”

Although Drew’s association with the team began just this past fall and the soccer season ended shortly after that, he and his family already feel very involved with the team and look forward to all that lies ahead.

Team IMPACT puts great importance on long-term associations between the teams and the children. As the organization’s website puts it, “Team IMPACT children are drafted onto the team and become an official member of the team from Draft Day through to Graduation. The child joins the athletic team and the student athletes join the child’s support team. The child gains great strength, camaraderie and support and the student athletes are taught lessons about courage, resiliency and life perspective that they can’t learn in a classroom.”

Founded just four year ago, Team IMPACT already counts more than 800 children and over 300 colleges among its ranks. Participating schools run the gamut, with large colleges such as the University of Florida and Penn State as well as smaller schools such as St. Olaf College of Minnesota, and of course, Notre Dame College.

The entire FitzGerald family is grateful to both Team IMPACT and Notre Dame College. The family has also been a force in the Angelman syndrome community. They host the annual Blarney Cup, which has raised significant funds for AS research through the Angelman Syndrome Foundation.

“Team IMPACT has just been fantastic, and so has Notre Dame College,” Suzie said.

“The captain of the team said this is really going to be great for the team because many of them don’t have the chance to get involved with kids or adults with disabilities. It was really nice to hear him say that.”

It’s been a win-win situation for everyone involved. The FitzGerald family is looking forward to even better things to come. Drew is now an official Notre Dame College Falcon, and his spirits are soaring. The team has become a true winner because of it. And so has Drew.

For more information about Team IMPACT, visit the organization’s website, http://www.goteamimpact.org/.

Click here for more about Drew’s “signing.”

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