Angelman Today November - December 2015

INCLUDING RESOURCES ● RESEARCH ● INSPIRATION

Angelman

Today

d i g i ta l ma g a z i ne

Holiday Shopping Guide Epilepsy Awareness Month www.angelmantoday.com

Inspirational Parent Quotes

November - December EDITOR’S LETTER Season’s Greeting, It has been an incredible year for myself, my family and Angelman Today. I absolutely must express my gratitude to everyone that contributed to Angelman Today and who continues to help it grow and wrap around this global community that has been actively wanting and needing to unite and share information and resources as quickly as possible.

From the open calls for research participants to research grants, and inspirational family stories, Angelman Today is the best resource to bring you answers and help you navigate on this journey just a little easier.

Warm Wishes,

In the new year we are adding to our media outlet with Video! We have created at YouTube channel, subscriptions are free and easily accessible for everyone. We will have everything from short helpful clips to an upcoming docu-series and I will be embedding links to videos in many article in Angelman Today. The Channel will be easy to share through social media.

I also want to hear from you! What would you like to see or learn? Who would you like to hear from in an interview? Would you like to peek into the daily lives of other families and find out what works for them? Tell me what questions you may have and we can search for answers together.

Lizzie Sordia Editor - in - Chief

Lizzie@angelmantoday.com Twitter.com/lizsordia Twitter.com/angelmantoday YouTube.com/angelmantoday

WWW.ANGELMANTODAY.COM

November / December 2015

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20 Editor’s Letter…………..……….……..……2 Epilepsy Awareness…… ..………….……5 Angel Parent Quote…………………….….7 Angels in Action - Daniele………………...8

What’s inside On the cover: Melissa, age 12

Photo provided by: Kat Adams

Angel Parent Quote..………………….......9 If I Need Help Giveaway………………….10 Happy Holidays………………….………..12 Angels Week Off Vacation Giveaway…....…………..……..14 Holiday Gift Guide………………………..17 Angels in Action (Melissa Adams)………………….............18 2016 Cover Contest………….……….…..19 Angels in Action...………...………….…...25 The History of Angelman Syndrome (Spanish)……………………………..........27 Angel Parent Quote……………………….29 Announcements……………………..........30

History of AS…………….……….…..34 Parent Recommended Books…………………………………35

Angelman and Associated Foundations Canadian Angelman Syndrome Society………………………4 Associacao de Sindrome de Angelman de Portugal……………..6 Asociacion del Sindrome de Angelman………………………11, 13

The Charlie Foundation…………...…16

Caroline’s Cart……………….…….……..31

The Angelman Syndrome Foundation……………….…….………20

Stay Connected……………….……...…...33

Angelman Syndrome Alliance…..26, 28

WWW.ANGELMANTODAY.COM

November / December 2015

Save the Date -- CASS Conference in 2016!

VENUE FOR EDMONTON 2016 CONFERENCE SELECTED

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.

Watch the CASS Newsletter and Website www.angelmancanada.org for continuing updates as planning proceeds. 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

WWW.ANGELMANTODAY.COM

November / December 2015

Epilepsy Awareness

November is Epilepsy Awareness Month Did you know?

-1 in 10 people in the US have had a seizure.

-The majority of individuals with Angelman Syndrome have Epilepsy.

For more info visit: www.epilepsyfoundation.org

WWW.ANGELMANTODAY.COM

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We are running a crowdfunding project to raise awareness and funds to the Portuguese Angelman cause.

To donate and/or get more information: http://ppl.com.pt/en/causas/umkm-por-um-sorriso November / December 2015

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"ALWAYS PRESUME

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COMPETENCE!" - Linda Rafert Yoakam

Angelman

Today

Angels in Action Celebrating the Abilities of our Angels

By Lyn Barnes Daniel is 25years old, lives in Dubbo, NSW Australia, and has the best social life of anyone I know (including me). He loves to go anywhere and socialize with anyone. He goes ten pin bowling, to the zoo, the movies, the local pub for lunch, and does Zumba twice a week.

His smile is infectious and even though he suffers daily from chronic pain, that smile never leaves his face, making everyone who comes across him smile as well.

My angel... Our angel.... half of Dubbos angel....

WWW.ANGELMANTODAY.COM

November / December 2015

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"Angelman Syndrome is something we all want to see cured. But it has made me a better person. It has taught me more about unconditional love than anything I ever learned in Sunday School or from any love song. We're all on a journey to see our children made whole ...but maybe they're making us whole in the process.“

“

-Regie Hamm

Angelman

Today

“If I Need Help” and “Angelman Today” care so much about this community and the safety of individuals with Angelman Syndrome. Now we have partnered up to offer you this great promotion!

See our video interview

For 5% off your 1st purchase enter promo code: Angelman Today

WWW.ANGELMANTODAY.COM

November / December 2015

Libro "Vivir con un Angel" Se trata de un libro escrito por 25 familias de la Asociación contando sus propias experiencias con un Angelman. Un libro imprescindible para comprender los que diariamente las familias viven.

Libro "Vivir con un Angel" para envios extranjero Se trata de un libro escrito por 25 familias de la Asociación contando sus propias experiencias con un Angelman.

Un libro imprescindible para comprender los que diariamente las familias viven.

Hemos analizado los precios de envio al extranjero, y sale sobre 10€ cada libro. El que este interasado en que le enviemos un libro al extranjero, debera pagarlo con tarjeta y a 20€ con gastos de envio incluidos.

Buy your copy Compre su copia http://www.angelman-asa.org/ WWW.ANGELMANTODAY.COM

November / December 2015

From all of us at

New Book: “Life with an Angel" “What is Angelman Syndrome?” That is usually the first question we ask the doctor as soon as our child is diagnosed with this rare disease. And then come the follow-up questions: What can we do? Is there a treatment? What is their life expectancy?

As soon as we become aware of the fact that there is no treatment or cure, our whole life is turned upside down. Each individual family deals with the situation the best way they can. Some choose denial. However, sooner or later, they will try to contact other families in the same situation who will be able to understand, to share their own experience and offer support in bad times and celebrate with us the, good times.

All Angel families would have loved to hear about the syndrome from a more positive and closer point of view than that offered by doctors.

www.angelman-asa.org/ And so 25 families belonging to the Spanish Angelman Syndrome Association decided to write down their personal stories in the hope of spreading the word on Angelman Syndrome and especially with the determination to help those who in the future will come face to face with this diagnosis.

We want them to know that they are not alone and that there is a life and hope beyond the syndrome. It may be difficult at times, but it will bring moments of total happiness, more than we could have imagined.

Order online Click here to buy the paper edition (20 euros, shipping included).

Click here to buy the digital edition (ebook, 3 euros). *The English version will be published soon.

And, most importantly, the book is a tribute to our sons and daughters: it is their lives and their stories we are sharing with the world, a story they aren’t able to explain with words.

WWW.ANGELMANTODAY.COM

November / December 2015

The Angel Wings Foundation is bringing you an Angelman Today Exclusive Vacation Giveaway!

WWW.ANGELMANTODAY.COM

November / December 2015

Last year, the Angel Wings Foundation hit upon a novel idea. How about giving someone a vacation? Someone who could really use it …someone who deserves it …someone who might actually need it to reset their lives. Well, we did just that and it worked out better than we could’ve ever imagined.

So this year we’re doing it again! One deserving Angelman family will win an all expense paid vacation to a music and wine event in Napa, California called “Live In The Vinyard.”

We realize that this isn’t scientific research or new breakthrough therapy techniques or an awareness campaign. All of those things are certainly vital and crucial to our collective journey as Angelman parents. We cheer them on and support them wholeheartedly. But we at the Angel Wings Foundation want to wrap our arms around the Angelman community and give hugs wherever and whenever we can. We know how fatiguing constant caregiving can be.

We also know how isolating it can be for the Angel to only see the same people day in and day out. So this “Angel Week Off” is just as much for the Angels as it is for the parents.

We will send in a male and female caregiver to the family’s home to give the Angel a week off as well. Activities will be planned every day that don’t include mom and dad.

After all, everybody needs a break from mom and dad sometimes. Besides, mom and dad will be getting a massage or golfing or horseback riding or drinking wine and listening to music somewhere in Northern California!

WWW.ANGELMANTODAY.COM

So here’s what you do …write an essay (500 words or less) describing your Angelman journey. We all have one and they are all deserving of a great vacation. But we can only do one at a time right now …sorry. An all-star panel of judges will read the entries and narrow them down to a top 5. The they will reread them and ONE family will win the vacation.

The panel consists of people from Make-AWish, Best Buddies, Special Olympics, Angelman Today and one board member from the Angel Wings Foundation. I don’t read them. I just get to call you and tell you you’ve won …I love that part.

All entries must be in by Thanksgiving Day, 2015. A winner will be chosen and announced on Christmas Eve …what a great Christmas gift! Then, we will start making arrangements for the vacation that will take place in April of 2016. A family member or designated care giver (in charge) must be present with our caregivers. So keep that part in mind. Safety first!

Last year’s winners, Mary and Rory, were so moved by the experience they have asked if they can donate to this year’s winner. I think that speaks for itself. They sent in a video to encourage everyone to enter.

Hopefully one day, we’ll be able to do this many times a year. But for this year, we can’t wait to read the entries and award some amazing Angel family a break and a time they will never forget.

We love you all. Now get to writing!

Email they essay entry to: AngelsWeekOff@angelmantoday.com

November / December 2015

WOULD YOU LIKE TO CONTRIBUTE ?

We welcome all Angelman foundations, parents, care takers, physicians and researchers.

Email articles and pictures to Lizzie@angelmantoday.com

WWW.ANGELMANTODAY.COM

November / December 2015

Night Light Star Projector

Radiance Floor Lamp

Holiday Gift Guide

Crazy Aaron’s Thinking Putty

Sensory Weighted Blanket Chewbeads Military Dog Tags

Senseez Vibrating Pillow

Krazy Gears

Angels in Action

By Kat Adams Melissa is 12 years old and has Angelman syndrome UPD. She loves to play games and laugh at her big Brother Jacob's jokes, she has a wicked sense of humor!

Melissa won the 'Child of courage' award at an event in her home town, I was very proud that her fellow citizens chose to recognize her daily struggles and her massive achievements in this way.

Melissa experiences life in such a way that

every day is an adventure, she brings so much love and happiness into both mine and Jacob's lives.

We have set up a small Foundation in Melissa's name to help support research into a cure for Angelman syndrome and have had many good times with our fundraising events, taking part in things such as skydiving and even carrying Melissa in a sedan chair for 5 miles.

Life is never dull with a child like Melissa.

Lots of tears along the way but much more laughter !

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Last year was such a success we are doing it again! Enter a picture of your loved one with Angelman Syndrome. Get your friends and family voting and they could be on the January cover of Angelman Today. Watch our Facebook page for details.

2014 Cover

2015 Cover

Because of you, AS families benefit THANK YOU to our phenomenal supporters this past year Holy Cow! Our AS friends and families have truly impressed our socks off this year! Your creativity and dedication is shattering past records and touching lives deeply. We at the ASF are humbled and honored to have had independent fundraisers raise more than $100,000 for the AS community to date.

Check out what just a few of our families have done in 2015.

The Meerdo Family

Kathryn, Matt and Stetson from Chip at AS event

Yaron Werber

www.Angelman.org

Brian and Drew Fitzgerald, annual Blarney Cup

(800) 432-6435

Int’l (630) 978-4245

info@angelman.org

THANK YOU to every individual and organization that played a role in these fundraisers, either by spearheading, attending or donating to these events.

Blarney Cup Paddle Tournament, The Fitzgerald’s in Ohio, $25,450 Meerdo Annual Golf Tournament, The Meerdo’s in Utah, $19,980 Chip Away at AS Golf Tournament, The Ely’s in Georgia, $11,683 Tractor Cruise, The Olsen’s in Kansas, $5,350

Family Fun Day - Michael Drzewiecki and company

Cure for the Angels Family Day, Angelique Tuthill in New York, $4,747 Discover Day Camp, Christina Polleto in New York, $4,309 Yaron Werber of Ovid Therapeutics raised $3,953 for ASF at the Brooklyn Rock n Roll 1/2 Marathon.

Hauser Junior High School Fundraiser in Westchester, New York, $3,535 Custom Harley Davidson Bike Show, Noel Perez and Berto Castellanos in California, $3,360

Berto and Minnie with their daughter Pam

Pardi Gras Promotion and Sales Proceeds, $2,500 Tierra’s Event, $2,435 Family Fun Day, Michael Drzewiecki in New York, $2,338 The Hope Classic at Lower Merion High School in Medinah, NY, $2,342 Run Like A Mother 5k, Tiffany Cruikshank in Hinsdale, Illinois, $1,880 Oakland A’s Fundraiser in California, $1,345 7th Street Sportsmen Club Fundraiser in Pennsylvania, $1,000 THANK YOU to all of the fundraisers who have brought in more than $100,000 of donations in 2015. We are very excited at the possibilities and creativity our families will bring in 2016.

Annual Tractor Cruise - Horton, Kansas

#Summit4Angelman Looks What’s Shouted From the Mountaintop!

Angelman Syndrome Awareness!

Father to young boy with AS climbs Mt. Kilimanjaro to raise awareness of AS

How can you help?

• Share your personal Summit story of accomplishment on Facebook and Twitter and include the hashtag, #Summit4Angelman • Introduce Angelman syndrome to new people…Kyle’s goal is to raise awareness of AS and he wants to reach 19,341—that’s one new person for every foot that Mt. Kilimanjaro is tall!

From Kyle himself: I’m going to take 8 days to climb up the world’s tallest freestanding mountain to raise awareness for Angelman syndrome and I’ve realized during my training that I don’t think I can do it alone! Of course I’m going up with a great group looking forward to helping the cause in any way they can, but I’ve found such strength in keeping focused on why I’m doing this and every time I “picture” my son Madden it keeps me going when I desperately want to quit or cut corners in training. If I keep in mind how my son never quits and overcomes his challenges with a smile, I realize this mountain isn’t quite as tall I as first thought.

The point is…without Madden, this climb seems a lot more difficult. Which got me thinking, what if I have an army of Angels with me every step of the climb. I’m asking you to send me a picture of your Angel so I can take them to the top of Kilimanjaro with me. Each photo and story you send me will provide the strength I need to keep going when the air is thin, the weather is cold, and my head is pounding. I will do everything in my power to get to the top with them. My chances will be far better with each person I take up with me. If I make it to the Summit, I promise they will see the view with me at 19,341 feet

• Share a photo of your loved one with AS (send to kyrooney@outlook.com) for Kyle to take to the top of Mt. Kilimanjaro!

Visit Kyle’s personal blog at www.summit4angelman.com to find out more about Kyle’s journey.

www.Angelman.org

(800) 432-6435

Int’l (630) 978-4245

info@angelman.org

ASF Communication Training Series Communication training you can understand and use

Having challenges with helping your loved one with AS better communicate? We have the resource for you! In collaboration with several AS communication experts, the ASF has created a FREE communication resource that you can access AT ANY TIME: the ASF Communication Training Series. This Series takes all of the hours of great communication workshops and breaks them down into smaller, digestible parts so that you and your individual with AS can reach her/his greatest communication success at any age. Using web-based teaching, the Series is designed to be sequential and you can join at any time and proceed through the training at your child’s pace of learning. Click here for more and to access the schedule, past webinar recordings, and handouts.

Meet the experts ERIN SHELDON, M. ED. Erin earned her Masters of Education studying the learning characteristics of students with AS. Erin works as an assistive technology consultant with a focus on supporting students with complex learning needs to access the general curriculum in inclusive classrooms. She founded the Angelman Literacy Project, an initiative to support families and school teams to foster emergent literacy development in students with AS. She presents professional development workshops and webinars across North America and Europe, including at conferences such as Closing the Gap and ATIA, and has authored manuals, book chapters, and journal articles.

DR. CAROLINE MUSSELWHITE, CCC-SLP Dr. Musselwhite is an assistive technology specialist with more than 35 years of experience working with children and adolescents with significant disabilities in a variety of settings, including Head Start, developmental day programs, homes, and the public schools. Dr. Musselwhite has written a number of textbooks and “howto” books on a range of topics, and has also authored many books and software programs for youth with disabilities.

She has presented thousands of workshops throughout North and South America, Australia, Europe, and Africa, and is a founding member and Fellow of the International Society for Augmentative and Alternative Communication.

MAUREEN NEVERS, MS, CCC-SLP, LICENSED SPEECH-LANGUAGE PATHOLOGIST, AUGMENTATIVE COMMUNICATION SPECIALIST Maureen earned a B.S. in Communication Disorders from the University of Massachusetts at Amherst in 1991, then earned a M.S. in Speech-Language Pathology from the University of Vermont in 1993. Her graduate work included participation in a comprehensive training program in AAC. She worked for Easter Seals in Massachusetts for eleven years before joining the Center on Disability and Community Inclusion at the University of Vermont eleven years ago. She currently works as an Augmentative Communication Specialist with the Vermont I-Team, where she is part of an interdisciplinary team that consults with school teams across the state to support individuals with complex communication needs.

MARY-LOUISE BERTRAM Mary-Louise Bertram is a qualified Early Childhood Teacher from Perth, Western Australia, with special qualifications and training in the areas of communication, sensory processing, and literacy supports for children with complex disabilities.

Mary-Louise became involved with the AS community in 2007 while

teaching a class of six children, four of whom had AS (all Del +). Since then, Mary-Louise has worked with people with AS of all ages across Western Australia in the first statewide comprehensive AS-specific communication intervention of its kind. She has supported families across the globe to advocate for their child’s right to high-quality communication and education intervention. Mary-Louise currently works in private practice supporting individuals with complex disabilities (and their families) with communication and literacy.

Families are also encouraged to support each other and share tips via the Series’ private ASF Communication Training Series Facebook group!

It’s ALL because of YOU Twenty years ago, we never would have imagined that so many generous people like you would open their hearts to help those affected by AS. Your generosity eases the financial and emotional burden on families by supporting our family resource program, and has helped our researchers make significant breakthroughs in treatments and potential cures for AS. Without you, there would be no us. We are forever grateful for your support!

www.Angelman.org

(800) 432-6435

Click here to make a contribution to the ASF’s end-of-year appeal. All donations are 100% tax deductible per IRS regulations.

Int’l (630) 978-4245

info@angelman.org

Angels in Action Celebrating the Abilities of our Angels

By Cass Gamero My sons name is Alexander and he was recently diagnosed in July 2015. He's only 18 months old and is loved by all. Anyone who meets him can't help but be memorized by his long eye lashes & beaming smile. When you see him you can't help but smile. My son also has some vision problems but is getting better. He loves his toy keys and could recognize his bottle from anywhere. He's lovable, friendly, joyful and bright.

WWW.ANGELMANTODAY.COM

November / December 2015

Gareth Edwards (Star Wars Director) acknowledges: The force is strong in the Angelman Alliance.

It is often said that parents will do anything for their children. A rare disease called Angelman Syndrome is proving testimony to this fact.

Driven by an unstoppable love for their children parent organisations from 15 countries have formed an alliance to work together to progress research that may help their children to speak, run, and live life to their full potential. As Gareth Edwards, patron of the UK Charity that hosted this years’ conference in Liverpool, England, said during his speech at the conference: “Angels go further and beyond.”

With the support of ISIS pharmaceuticals, recent findings by professor Art Beaudet (USA) are expected to progress to clinical trials. Results from other researchers, in collaboration with pharmaceutical companies also have promising results to improve the quality of life for children & adults with Angelman Syndrome.

Initially having to overcome language barriers, cultural differences and different legal systems the parent organisations created an international Alliance on Angelman Syndrome (ASA) to drive research forward, pooling resources and funds. In the first two years over half a million euro’s (550.000,-) was raised, with more parent organisations worldwide continuing to join. The parent organisations met this year in Liverpool during the 50th anniversary of Angelman Syndrome. At this conference representatives came from: England, Ireland, Belgium, Netherlands, Germany, Austria, France, Italy, Portugal, Japan, Israel, Hungary, Poland, Finland and Switzerland.

As professor Ype Elgersma (NL) said: “These are very exciting times, because we might actually have the possibility to reverse a severe genetic disease.” Therefore the need to get things going is stronger than ever within the Alliance and the need for more funding is evident. Because in the end every parent wants their child to be as happy and healthy as possible.

Everything we do, we do for our Angels. www.angelmanalliance.or g For information about the Alliance, the research and other questions you can contact Betty Willemsen betty.willemsen@ninafoundation.eu

La Historia del Síndrome de Angelman (Spanish Translation)

El Dr. Harry Angelman fue un médico Inglés quien identificó lo que hoy en día se llama Síndrome de Angelman.

Nació en Birkenhead, Inglaterra. Le fascinaba el idioma y la cultura de Italia.

El fue el primero quien observó trés niños no relacionados quienes demostraban síntomas similares – atrasos severos intelectuales, un modo de andar que era espasmódico y rígido, ausencia del hablar, convulsiones, y una disposición contento.

Luego, duranted unas vacaciones en Italia, descubrió una pintura llamada “Un Niño con una Marioneta,” creado por el artista del Renascimiento Giovanni Francesco Caroto, en el museo Castelvecchio en Verona. La pintura le hizo pensar en los niños que eran sus pacientes, y le condujo a publicar un artículo profesional en el año 1965 que describía lo que el llamaba “Niños Marionetas.” En aquel momento la importancia de su artículo no fue reconocido como algo importante.

No pasó nada mas hasta Charles A. Williams y Jaime L. Frias del departamento de Pedíatra, Divisíon de Genética, de la Universidad de Florida Colegio de Medicina de Gainesville, Florida, sometieron un artículo a la Revista Americana de Genética Médica explicando estudios de séis pacientes, comparando sus datos con los de informes previos – incluyendo atrasos intelectuales severos, el andar como un “marioneta,” anormalidades cranio-faciales, y espisodios frecuentes de risas. De repente, se notó que eso era mucho más común de lo que anteriormente se creía. Ellos propusieron ponerle el nombre de Síndrome de Angelman, en honor del Dr. Harry Angelman.

Dr. Harry Angelman 1915 – 1996

Angelman

Today

Gareth Edwards (Directeur de Star Wars) l’affirme : la Force est avec l’Angelman Syndrome Alliance (ASA).

On dit souvent que les parents feraient tout pour leurs enfants, et c’est ce qui se vérifie à l’occasion d’une maladie rare appelée le syndrome d’Angelman. Animées d’un amour infini pour leurs enfants, des organisations parentales de 15 pays ont formé une alliance dans le but de faire avancer la recherche qui permettra à ces enfants de parler, courir et vivre leur vie pleinement. Comme l’affirmait dans son intervention Gareth Edwards, soutien de l’association de bienfaisance anglaise qui accueillait cette année la conférence internationale à Liverpool : « Les Anges vont plus loin et au-delà ».

De récentes découvertes dues par le Professeur Art Beaudet (USA) avec le soutien des laboratoires pharmaceutiques ISIS vont conduire à des essais cliniques. D’autres chercheurs, soutenus par des sociétés pharmaceutiques ont obtenu des résultats prometteurs pour améliorer la qualité de vie des enfants et des adultes atteints du syndrome d’Angelman.

Surmontant les obstacles dus aux langues, aux différences culturelles et légales, les organisations parentales ont créé l’Alliance du Syndrome d’Angelman (ASA), visant à faire progresser la recherche et à mettre en commun les ressources et les financements. Dans les deux premières années, 550 000 € ont été réunis et d’autres organisations venues du monde entier souhaitent s’y associer. Cette année, les organisations de parents se sont rencontrées à Liverpool dans le cadre du 50ème anniversaire de l’identification du syndrome. Étaient représentés l’Angleterre, l’Irlande, la Belgique, les Pays Bas, l’Allemagne, l’Autriche, la France, l’Italie, le Portugal, le Japon, Israël, la Hongrie, la Pologne, la Finlande et la Suisse.

Comme le disait le Professeur Ype Elgersma (NL) : « Nous vivons des temps prometteurs car nous sommes en mesure d’inverser une grave maladie génétique ». C’est pourquoi il est de plus en plus nécessaire de renforcer notre action et de trouver d’autres financements. Parce qu’il est clair que chaque parent souhaite que son enfant vive heureux et en bonne santé.

Tout ce que nous faisons, nous le faisons pour nos Anges. www.angelmanalliance.org Pour toute information sur l’Alliance, la recherche et d’autres questions, vous pouvez contacter Betty Willemsen betty.willemsen@ninafoundation.eu

“

God only gives us what He is willing to walk us through!

“

-Joell Gingrich Ketcham

Angelman

Today

Announcements: We are expanding Angelman Today to include a new platform of video media!

To do this we will be making some changes that will include the publishing schedule for the online digital magazine. Starting in January 2016 we will start publishing Angelman Today quarterly. 4 informationpacked editions a year.

Subscriptions of the online magazine will remain FREE! Subscribing to the YouTube channel is also FREE! We welcome all Angelman foundations, parents, care takers, physicians and researchers to contribute. Deadlines are: • December 10 • March 10 • June 10 • September 10

Adding youtube video platform to Angelman Today Video content will include: • Interviews • Product Reviews • Latest Research • How To videos • Parent tips and interviews • Much more.

Email Lizzie@angelmantoday.com if you would like to participate Show your support for Angelman Today and subscribe

WWW.ANGELMANTODAY.COM

November / December 2015

Toby B. Kroger in Kentucky

Making Shopping A Little Easier This Holiday Season …………………………………………………

There are many challenges that come along with being a caretaker of an individual with special needs, including a task that for many may be simple, a trip that we all must do regularly, which is shop for groceries.

The best inventions are usually created from a persons desire to satisfy a need or to solve a problem they encounter in their own life. One set of parents did just that. Drew Ann and David Long have three children , Caroline is their middle child, she was diagnosed with Rett syndrome. The challenge came when Drew Ann went grocery shopping with her kids. She had a

WWW.ANGELMANTODAY.COM

Scotty at Wegmans in NY toddler and Caroline in her wheelchair. The problem presented itself as in the form of a question: “How do you push a wheelchair and a shopping cart?”.

Drew Ann had the answer. She was able to vision the cart and sat in her car and sketched it out on paper.

She knew she was not the first to have this dilemma, nor would she be the last.

Caroline’s Carts can now be found at some select retailers. You can visit www.carolinescart.com to find a location near you.

Parents, we need your help! We, at Angelman Today are calling for action. There are not enough stores with Caroline’s carts. Parents, it is up to us. We are the ones that need them so we have to be the ones to request them at our local retailers. Some stores like Target, Shoprite, Publix, Lucky and Wegmans are starting to have them available. If they are not currently at a store near you just ask the manager.

You will be helping not only your family but the many other families that may not yet even know this helpful cart exists.

November / December 2015

CONTRIBUTORS

Marilyn Kennedy Assistant Editor

Sybille Kraft Bellamy Parent Expert in Nutrition And LGIT diet

Marilyn@angelmantoday.com

Facebook.com/AngelmanSyndromeDiet

Additional Contributors: Kat Adams Maria Cano Moraleda Erin Bates

All of the Angelman and Associated Foundations across the globe

Thank you!

A big thanks to all of the contributors that help bring you Angelman Today!

Angelman Today Supporters: If I Need Help – www.ifineedhelp.org

Angelman Today is a lifestyle guide to achieving better health for individuals with Angelman Syndrome and their families. It is written with your needs in mind but is not a substitute for consulting with your physician or other health care providers. The publisher and authors are not responsible for any adverse effects or consequences resulting from the use of the suggestions, products or procedures that appear on this website or online magazine. All matters regarding your health should be supervised by a licensed health care physician. Copyright 2014 Angelman Today, LLC. All rights reserved worldwide.

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

He first observed three children who were not related but showed similar symptoms of severe intellectual delay; stiff, jerky gait; lack of speech; seizures; motor disorders; and happy demeanors.

Although Dr. Angelman was born in Birkenhead, England, he was an enthusiast for the language and country of Italy. And it was 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. Reminded of the children he’d observed, 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.

Dr. Harry Angelman 1915 – 1996

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, “puppetlike” 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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