INCLUDING RESOURCES ● RESEARCH ● INSPIRATION
Angelman
Today
d i g i ta l ma g a z i ne
Book Giveaway!
Angels in Action www.angelmantoday.com
Celebrate the would be 100th Birthday of Dr. Angelman
2015 EDITOR’S LETTER We 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 Lizzie Sordia Editor - in - Chief EMAIL: LIZZIE@ANGELMANTODAY.COM FOLLOW: TWITTER.COM/LIZSORDIA FOLLOW: TWITTER.COM/ANGELMANTODAY
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July / August 2015
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What’s inside Editor’s Letter…………..……….…………2 Ribbonzs ……….……….…………………5 Angels in Action………………..................7 100th Anniversary Dr. Harry Angelman..………………….......8
On the cover: Caroline Roberts, age 15
Photo provided by: Adrian Roberts Taken by Hannah Lockaby
The History of Angelman Syndrome (Greek)……………………………............10 Light the Night on Fire……….…………..11
Stay Connected……………………...29
Nutrition Labeling…………………..……..12
History of AS………………….….…..30
Angels in Action...………...………….…...13
Parent Recommended Books………………………………….31
Gelatin Fruit Snacks………………….…..20 2nd Year of Angelman Today………….…21 The History of Angelman Syndrome (Spanish)……………………………..........22
Angelman and Associated Foundations
Le syndrome d’Angelman - Parcours de vie des adultes: A book by Anne Chateau and Odile Piquerez……………………………26
Canadian Angelman Syndrome Society………………………4
Book Giveaway……………………………27 The History of Angelman Syndrome (Basque)……………………………..........28
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The Charlie Foundation …..…………..8 The Angelman Syndrome Foundation…………………….….14-19
July / August 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
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July / August 2015
Ribbonzs
We had an amazing time at the Angelman Syndrome Foundation National Walk Event in Orlando, FL, May 16, 2015! This was our first year participating as a vendor. We’ve attended for the past three years, as my (Karen’s) endearing nephew, Dylan, has Angelman Syndrome. We have a wonderful time every year meeting the kids, families and friends of this warm, inviting and encouraging community. We were proud to introduce our brand Ribbonzs at the vendor fair. Ribbonzs is a brand of unique, fun and functional items styled around the awareness ribbon design. We especially designed our Ribbonzs Phone Webzs in Angelman blue for the event. It’s the perfect item to bring awareness everyday, as it fits on most any size Smartphone or case and functions as a great way to get a better grip on your phone! Our very own Terry Farmer, Florida artist and Co-founder of Anoki and the Ribbonzs brand, painted an original oil painting inspired by the Angels, “Angelman on for Courage,” and donated it to the raffle at the walk. We also had an interactive hand printing activity that allowed us to meet and spend time with the kids and families and friends. Our items are also available for sale on our website, http://www.Ribbonzs.com. We developed the Ribbonzs brand with a WWW.ANGELMANTODAY.COM
passion for people and quality of life in mind. We have a personal connection to the Angelman Syndrome Foundation, and we want to do our small part in keeping their gallant efforts going as they work towards continuing their research efforts that will eventually lead to a cure! Every time we sell an item that was designed specifically for the Angelman Syndrome Foundation, 10% of the sale will go to the foundation. We are reaching out to everyone we know and everyone they know on social networks like Twitter and Facebook. In less than 24 hours, we had over 100 people become aware of Angelman Syndrome and the foundation. We are happy to continue our efforts in bringing awareness to this wonderful cause. Please visit our website Ribbonzs.com and chat with us on Facebook, facebook.com/ribbonzs. See you next year at the walk! July / August 2015
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My son is not his diagnosis. As a parent to a child with Angelman Syndrome I will help him achieve all that he can and completely disregard everything doctor’s said he cannot.
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-Lizzie Sordia
Angelman
Today
Angels in Action Celebrating the Abilities of our Angels
By Adrian Roberts, Mom to Caroline This is our Sweet Caroline and she was on her way to the 8TH grade prom in this pic. She attends Whittemore Park Middle and is 15 years old. She enjoys cheering for her school, was inducted in the Jr. Beta Club this year and was on the Valentine's Court at her school. She enjoys being with her family, staying current with social media, swimming (of course), playing with her sisters, laying on the beach and making others around her smile. WWW.ANGELMANTODAY.COM
Her smile and laughter will illuminate any room she walks in. She tries her hardest at everything she does and she amazes us everyday. Although we aren't seizure free they are few and far between and we know that we are extremely blessed.
July / August 2015
CELEBRATING 100 YEARS!
WE CELEBRATE THE MAN WHO STARTED IT ALL
50th anniversary of the first scientific paper being written DR. HARRY ANGELMAN WOULD HAVE BEEN 100 YEARS OLD. AUGUST 13, 1915 – AUGUST 8, 1996
Angelman
Today
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The Angelman community has so much to be excited about. Our researchers have made astonishing discoveries in the last few years. This relentless community, fueled by those hugs and smiles, continues to push us closer to a cure. Let's keep the momentum and reach the ultimate goal.
“
-Greg Dohrmann President Angelman Syndrome Foundation
Angelman
Today
Η Ιστορία του συνδρόμου Angelman (Greek Translation)
To Σύνδρομο Angelman ανακαλύφθηκε από τον Άγγλο ιατρό Δρ. Harry Angelman. Ο Δρ. Harry Angelman γεννήθηκε στο Birkenhead της Αγγλίας. Αγαπούσε ιδιαίτερα την Ιταλία καθώς και για την Ιταλική γλώσσα. Αρχικά παρατήρησε σε τρία παιδιά χωρίς συγγενική σχέση, την παρουσία παρόμοιων συμπτωμάτων όπως σοβαρή νοητική καθυστέρηση, δυσκαμψία, σπασμωδικές κινήσεις, έλλειψη ομιλίας, επιληπτικές κρίσεις, κινητικές διαταραχές και ιδιαίτερα χαρούμενη και φιλική διάθεση. Σε κάποιο ταξίδι αναψυχής του στην Ιταλία και ενώ επισκέφτηκε το μουσείο Castelvecchio στην Βερόνα, παρατήρησε ένα πίνακα με την ονομασία «Το αγόρι με τη Μαριονέτα» (“A Boy with a Puppet”), από τον ζωγράφο της Αναγέννησης Giovanni Francesco Caroto. Έχοντας υπόψη του τα τρία παιδιά, ο Δρ. Harry Angelman δημοσίευσε το 1965 ένα άρθρο που μιλούσε για τα «παιδιά μαριονέτες». Παρόλα αυτά, τότε το άρθρο του δεν θεωρήθηκε σημαντικό. Το 1982, οι Charles A. Williams και Jaime L. Frias του τμήματος Παιδιατρικής, Ειδικευόμενοι στην Γενετική του Πανεπιστημίου Florida College of Medicine, Gainesville δημοσίευσαν στο Αμερικάνικο Ημερολόγιο Γενετικής (“American Journal of Medical Genetics”) άρθρο κάνοντας αναφορά σε μελέτες έξι ασθενών και συγκρίνοντάς τες με παλαιότερες αναφορές ασθενών που παρουσίασαν συμπτώματα όπως σοβαρή αναπτυξιακή καθυστέρηση, συμπεριφορά κινήσεων «μαριονέτας», κρανιοπροσωπικές ανώμαλίες, καθώς και συχνά επεισόδια έντονου γέλιου. Τότε έγινε αντιληπτό πως το σύνδρομο ήταν πιο συχνό από αρχικά θεωρείτο και έτσι πήρε και την ονομασία του από τον Δρ. Harry Angelman και ονομάστηκε Σύνδρομο Angelman.
Dr. Harry Angelman 1915 – 1996
Angelman
Today
Please join us for a unique fundraising event on Friday, Sept. 11th, 2015 at Boston Harbor Hotel from 7:00-11:30pm. Enjoy great food & drinks, dancing to the band Fusion, guest speakers, silent auction, and inspiring "Lite the Night" paddle raise. FAST is committed to raising at least $20 million to continue support of the FIRE Initiative (FAST Integrative Research Environment), the most aggressive, collaborative research initiative to date in identifying treatments and a cure for AS. The Fire Initiative spans four universities, funding more than 24 scientists working on drug discovery, gene therapies, new animal models and technologies as well as further elucidating the genetic mechanisms that cause AS.
In just 2 years, the FIRE team has identified 3 potential drug treatments, 2 potential gene
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therapies and is developing 2 novel animal models. With sufficient funding, we can move these advances from the lab to our children who so desperately need them. FAST has funded over $3 million in ground-breaking research and has recently announced the firstever sponsored clinical trial of a potential treatment of AS scheduled to begin later this year. Your support is our driving force! If you are unable to make it, please consider making a donation. This year's event is presented by: F.W. WEBB Company, Danielle Pinders, Amy Girouard Michael Cecere Maiya Dos, Judy Swanton. July / August 2015
Nutrition Labeling and the dangers that could be hiding. By Marilyn Kennedy
We are all pretty conscientious about reading food labels, especially those of us who have or who are caretakers for loved ones who have serious illness, allergies and/or dietary restrictions. I recently went to the outpatient lab at my local hospital to have a routine blood draw. About halfway through, I began to pass out and so the phlebotomist had me put my head between my knees, put a cold compress on the back of my neck, and offered me a juice box.
I had the presence of mind to ask if the juice contained sugar. The response was, “I don’t know.” I took one or two sips of the “juice” but it tasted odd to me and so I didn’t finish it. When I got home, out of curiosity, I read the ingredients label … which took up an entire side of the juice container! The first thing that struck me was the bolded statement: Contains no juice.
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The first ingredients were water, sugar, corn syrup solids, whey protein isolates, artificial flavors … and a long list of additives and preservatives. This was just chemical soup! I have a severe multi-glandular autoimmune disorder and I am in recovery from cancer. I have many food sensitivities and dietary restrictions including no sugar, dairy, or food additives. Unfortunately I thought I was safe in a medical care facility. I was really surprised that a medical professional working in a hospital lab would offer a food product to a patient without asking about their medical conditions or any food allergies, sensitivities or dietary restrictions they might have. So … please read food labels not just at the grocery store but in hospitals, labs, outpatient care centers, and urgent care facilities.
July / August 2015
Angels in Action
Brett had the opportunity to attend Night to Shine hosted by the Tim Tebow Foundation.
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July / August 2015
Angelman Syndrome Foundation National Walk THANK YOU for supporting the 2015 ASF National Walk! Individuals with Angelman syndrome and their families rely upon the Angelman Syndrome Foundation for guidance, information, direct support, and to advance research with the ultimate goal of finding a cure for AS. To accomplish this, the ASF relies upon funds raised during the ASF National Walk, where more than 10,000 individuals rallied in support of the AS community at 35 sites across the country in May.
It’s Not Too Late To Donate! Fundraising for the ASF National Walk continues until we reach our goal of $1.25 million for AS research and family support! We have raised more than $1 million towards the goal. THANK YOU for your generous support of our loved ones with AS!
THANK YOU for your time, generosity and overall support of the AS community through the 2015 ASF National Walk!
www.Angelman.org
(800) 432-6435
Int’l (630) 978-4245
info@angelman.org
A very special THANK YOU to the 2015 Walk Coordinators! Our Walk Coordinators make the ASF National Walk happen. They and their support teams volunteer thousands of hours a year to make the Walk experience the best possible for all Walkers. They are pivotal to raising $1.25 million for AS research and family support! To send a personal thank-you to a Walk Coordinator, email Kitty Murphy and she will share your note with them. THANK YOU, WALK COORDINATORS!
Bolded cities are also this year’s highest fundraising sites! Congratulations and THANK YOU! • Kerry Burden: Huntsville, AL • Vanessa Zarate: Tempe, AZ • Mary Fasang: Los Angeles, CA • Tracey Kurihara and Mike McFadden: Sacramento, CA • Alice and Mark Evans, Karen and Matt Harvey: San Diego, CA • Christa Graham: Ontario, Canada • Brittany and Aaron Ruiz: Denver, CO • Leah Boice: Hartford, CT • Lizzie Sordia: Orlando, FL • Kathy Rokita: Indianapolis, IN • Natasha Martin: Olathe, KS • Stephanie and Andy Headley: Wichita, KS • John Geraghty: Naperville, IL • Michelle Fontenot: Breaux Bridge, LA • Michael Cecere: Boston, MA • Nicole and Jay Leitz: Auburn Hills, MI • Rebecca Kimball: International Falls, MN • Sara Schwarzrock: Twin Cities, MN • Danielle Stuart: St. Louis, MO • Rebecca Bartlett: Lake of the Ozarks, MO • Grace Samson: Las Vegas, NV • Kim Prenatt: Buffalo, NY • Alanna Orlino: Warwick, NY • Julius McKinley: Durham, NC • Penny Jusko: Cincinnati, OH • Alisa Giulietti: Eugene, OR • Pam Peppers: Philadelphia, PA • Corrinna Bisceglia: Pittsburgh, PA • Jennifer Harrison Bull: Columbia, SC • April Roche: Nashville, TN • Donna Manhart: Dallas, TX • Debbie Sukin: Houston, TX • Beth Deever: Salt Lake City, UT • Kristian Vasquez: Washington, DC • Jessica and David Garrick: Seattle, WA
Dr. Harry Angelman’s 100th Birthday Celebrating and Honoring the Life of Dr. Harry Angelman It is because of Dr. Harry Angelman, the English pediatrician who identified Angelman syndrome, that thousands of individuals with AS are able to obtain proper diagnoses and treatments. Without him, our community would not be the strong, tightknit community that we are—we would not be the collective voice and movement advocating for and advancing towards a better life for our loved ones with AS with the hope that one day we will find a cure.
Enter the “Harry Angelman Art Contest” Dr. Angelman loved art and it was while at the Castelvecchio Museum in Verona, Italy that he saw the picture, Boy With A Puppet, which prompted him to write his original medical paper about the disorder. Click here to watch a video of Dr. and Audrey Angelman talk about that original paper! Use Dr. Angelman’s birthday as a way to CELEBRATE ALL PEOPLE WITH AS and create a work of art in honor of Dr. Angelman! Here’s how it works: • Create a work of art—painting, drawing, or anything flat (no 3D submissions)—that represents the AS community and honors all individuals with AS, and that falls within one of the following themes: – Breaking the barriers of isolation (a quote of Audrey Angelman’s) – Smiles that light up a room, but mask severe challenges – Individuals with AS can achieve more than we know
www.Angelman.org
(800) 432-6435
Dr. Angelman took his support of the AS community beyond the doctor’s office—he and his wife, Audrey, were also personal supporters of individuals with AS, meeting with scores of families as we collectively worked to generate greater awareness and support for individuals with AS and the unique challenges they face. It is because of Dr. Angelman that we have a bright future for our loved ones with AS!
Celebrate with us!
The Angelman Syndrome Foundation is thrilled to celebrate the life of Dr. Angelman and encourages ALL families to join the celebrations
• The ASF will feature all submissions on social media, angelman.org, and in other communications • Submissions are encouraged from ANYONE who is passionate about the AS community—including and especially our individuals themselves! • The ASF will choose the Top 10 most creative, unique, original and inspiring and feature those prominently for the AS community to then vote on their favorite. The winner will be featured on the 2016 ASF National Walk swag bag! (The color of the 2016 Walk bag will be determined in the future, depending on the winning artwork) • Artwork requirements: maximum artwork dimensions 8” x 10”, can be any assortment of colors or materials but must be flat • Submit to the ASF by October 13, 2015 via one of the two methods for the ASF to feature: – Submit a high-resolution photo of your piece of art to DrAngelman100@angelman.org – Mail the original artwork to the ASF office (it will become property of the ASF if you choose this option)
Int’l (630) 978-4245
info@angelman.org
Host a Birthday Party
Submit a letter-to-the-editor
Invite your neighbors, friends, family members, colleagues and others to a birthday party to bring awareness to AS— with your loved one with AS as the guest of honor! • Set a date—preferably Thursday, August 13!—and send out invitations • Create some family fun by baking a birthday cake for Harry—and don’t forget 100 candles! • Create your own party activities—it’s summer, so have some fun! • Be sure to discuss who Harry Angelman is and what is AS with all who attend • Most importantly, take photos and share them via social media and with the ASF!
Build awareness of AS in your community by downloading, customizing, and submitting the ASF’s template letter-tothe-editor to your local newspaper. Click here to access it and for additional tips. This is a great way to raise awareness of our loved ones with AS!
There will be many celebrations during the ASF Biennial Conference in July—stay tuned for updates from the Conference!
Dr. Harry Angelman’s 100th Birthday Your Stories The following pictures and personal stories were submitted by AS families, friends and admirers of Dr. Harry and Audrey Angelman. “Imagine our surprise when Audrey and Harry walked up to our table at the 1993 Orlando ASF Conference banquet and asked if they could sit with us. We all felt so honored! Audrey and Harry could not have been more down to earth and humble... However, we were all very nervous to have “royalty” sitting with us! To break the ice, my husband, Mark (who is far from shy!) asked if we could take some photos. Our angel daughters, both named Whitney, posed with Audrey and Harry, as well and we were so fortunate to get those precious photos that year.” —Alice Evans from San Diego, CA
“Our son Callum was born in November 1990 in Canberra, Australia. The genetic counselor had diagnosed him with AS. We were hungry for knowledge of this boutique disability. We were off to Orlando, Florida for the fourth American Angelman Syndrome Foundation Conference. It is a long way from Down Under to Florida! We both were tired from the long flight, but our spirits were lifted when we met Harry and Audrey Angelman. Harry struck us as quiet, modest and thoughtful, and maybe a little bemused at how a couple with no children, had now a worldwide family celebrating his acute observation and early research as a physician. Audrey was bright, bubbly and charming. Their personalities complemented each other. Having a child with AS has been a great excuse for travel. We attended the 1995 ASF Conference in Colorado Springs and were warmly greeted by Audrey. Sadly, Harry had passed since the 1993 Conference. We continued to correspond with Audrey sending her our Christmas newsletters until her untimely passing.” —Keith Bradley and Kerry O’Kane from Canberra, Australia
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3 Pictured above, left to right: 1. Audrey Angelman and Genevieve Longtin at the CASS Conference in Ottawa, July 1998. 2. Dr. Angelman and Audrey at the 1993 ASF Conference. 3. Audrey Angelman and Bob and Trent Thompson at the CASS Conference in Ottawa, July 1998.
www.Angelman.org
(800) 432-6435
Int’l (630) 978-4245
info@angelman.org
Stay tuned…and please share! Upcoming ASF Educational Webinars angelman syndrome foundation
EDUCATIONAL WEBINARS
Get prepared for back to school! ASF Educational Webinars are a key source of information and cover a wide range of topics including research updates, clinical developments, tips for everyday living, managing symptoms, and many more. Plus, you have the ability to ask questions of the speakers, who are experts in their respective field. Pay special attention to upcoming webinars about communication and education topics—you don’t want to miss them! Dates for the following webinars will be announced shortly: • Lizzie Sordia, editor and publisher of Angelman Today magazine and also a member of the ASF Family Resource Team, will be hosting a webinar in the near future about helpful tips, products, services and devices for every-day Angelman use. • Michelle Harvey and Eric Wright, who are also members of the ASF Family Resource Team, will be hosting webinars about IEPs in August and September. Stay up-to-date with the latest information by signing up to receive emails from the ASF. Click here to view recordings of past webinars, which include: • Dr. Stephen Calculator discusses fostering and improving communication skills in individuals with AS. Mac and tablet users - Watch on YouTube. • Erin Sheldon discusses Communication Support in the Inclusive Classroom Students with Angelman Syndrome. Mac and tablet users - Watch on YouTube.
Calling all parents to share their most useful resources! Do you have a product, service, equipment, device, vendor or manufacturer suggestion that you think other parents could benefit from? Please share! Send an email to webmaster@angelman.org and we will share your suggestions with all of our AS families and community.
Creamy Gelatin Fruit Snack
GF
LGIT
Dairy Free
Ingredients: - 4 cups of canned coconut milk - Unflavored Gelatin powder - Blueberries and Raspberries or fruit of your choice Cook one cup of coconut milk with the gelatin power until gelatin is dissolved. Combine with the 3 other cups of coconut milk. Let cool before pouring into silicone molds, then add fruit. Refrigerate for 2-4 hours or until firm. WWW.ANGELMANTODAY.COM
July / August 2015
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JULY / AUGUST 2014
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
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Charles de Broin’s favorite quote: Société du syndrome d'Angelman A man who not only understands intellectual disabilities but did something about it for all his life once said ,.. "To be human is to bring the head and the heart together. Individuals with severe intellectual disability have the extraordinary capacity to enter into relationships, to trust, and to love, and that is maybe the great secret of the human being. It is love that will unify the human family. We need to learn to love each other, not just to have a good head where we’re proving that we’re better than others. People don’t realize that the secret of being human is the capacity to understand, but more than that, it is the capacity to love. -Jean Vanier
“
Angelman
Today
The Charlie Foundation To Help Cure Pediatric Epilepsy was established twenty one years ago by Jim and Nancy Abrahams to advocate for ketogenic diet therapy for children with epilepsy. Their son Charlie recovered from a catastrophic epilepsy by adhering to a medically supervised ketogenic diet. Our organization has since expanded its mission beyond epilepsy. With growing evidence that ketogenic diets can improve a variety of brain disorders and can even thwart certain cancers, we have evolved into a global leader in providing ketogenic diet resources for many conditions and for people of all ages In 2014 we changed our name to The Charlie Foundation for Ketogenic Therapies. Charlie, age 2
RESOURCES AVAILABLE IN THE RESOURCES & TOOLS LINK OF CHARLIEFOUNDATION.ORG EQUIPMENT Gram Scale Digital food scale Weighs to the tenth of a gram 5 year warranty
Mini Silicone Spatulas To scoop every morsel of food
Diet Kits Scale, 2 spatulas and Parent’s Guide, value priced
Magic Grips Multi-purpose rubber sphere for opening jars, anti-slip pad etc.
RESOURCES Parent’s Guide: Step-by-step guide to the ketogenic diet: Booklet Designed for caregivers of children who are on the oral ketogenic diet. Food preparation, menus, recipes, and sick-day guidelines.
English and Spanish available
Modified Ketogenic Diet Therapy: 1:1 and 2:1 Prescriptions: Booklet Designed for all ages requiring a simple approach to ketogenic therapy
Modified Ketogenic Diet Therapy 1 : 1 and 2 : 1 Prescriptions Metabolic Diet Therapy for Neurologic and Other Conditions
Beth A. Zupec-Kania, R.D., C.D. The Charlie Foundation for Ketogenic Therapies
KetoDietCalculator (formerly KetoCalculator) Online diet calculator program. available to licensed nutritionists who can extend access to their clients. Program includes ketogenic ratios of 1:1 to 5:1 and can be adapted to Modified Ketogenic, Low Glycemic Index Treatment and Modified Atkins diets, a weekly menu planner to organize meals and a snack creator. UPDATED JANUARY 2014
Low Carb Product List Over-the-counter products such as toothpastes, pain relievers, infant-care, soaps, lotions etc.
LOW CARB AND
First Do No Harm – DVD ABC movie starring Meryl Streep by Jim Abrahams
CARB-FREE
Carbohydrate free
Products that contain minimal carbohydrate
This is a list of products that contain minimal or no carbohydrate intended for use with the ketogenic diet. The ingredients have been provided by the manufacturer. Some manufacturers will not provide specific carbohydrate content therefore the ingredients are used as a guide. Check the ingredient label of the product with this list to ensure that the product has not changed. There may be other products that are carbohydrate-free or contain minimal carbohydrate that are not on these lists. This list will be updated periodically and posted on the Charlie Foundation website: www.charliefoundation.org. Always check with a doctor before using new medications. Carbohydrate Ingredients
Non-Carbohydrate Ingredients
Sugars: dextrose, fructose, glucose, lactose, sucrose, sugar Starches: cornstarch, pregelatinized starch, sodium starch glycolate, sodium starch glycolate Sorbitol Mannitol Xylitol Maltitol Isomalt Erythritol Glycerin Hydrogenated Starch Hydrolysates (HSH) Ascorbic acid Citric acid Lactic acid Maltodextrin Magnasweet Probylene glycol
Asulfamine potassium (k) Aspartame Cellulose Carboxymethylcellulose Hydroxymethylcellulose Microcrystalline cellulose Magnesium stearate Stevia (rebiana) Saccharine
THE CHARLIE FOUNDATION www.charliefoundation.org
Introduction to the Ketogenic Diet – DVD Video describing the keto diet by Jim Abrahams
Recipes Low carbohydrate recipes with photos and video demonstrations
CONTRIBUTORS
Marilyn Kennedy Assistant Editor
Sybille Kraft Bellamy Parent Expert in Nutrition And LGIT diet
Marilyn@angelmantoday.com
Facebook.com/AngelmanSyndromeDiet
Additional Contributors: Adrian Robertson Anne Chateau Juanma Ramirez Clairy Kourkouta Danielle Pinders
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: Ribbonzs – www.ribbonzs.com
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.
Le syndrome d’Angelman - Parcours de vie des adultes: A book by Anne Chateau and Odile Piquerez just published in France and in French
This work covers all the aspects of the life of young adults with a rare neurogenetic disorder, the Angelman syndrome. It is still a poorly understood disability, especially with regard to adults, many of whom have never been diagnosed or have been diagnosed belatedly. Sparkling personalities often jovial and exuberant, they involve their parents, caregivers, educators and specialists in an enigmatic situation on which this work attempts to cast a new light. However, the universe which is described is often less than joyous, it is often hard for everyone, “full of sound and fury” with episodes of difference, indifference, rejection and violence. This book raises questions as to the attitude of society to victims of Angelman syndrome as it has questioned the many specialists who have contributed their valuable contributions to the reflections of those whose parental role has made WWW.ANGELMANTODAY.COM
them unwitting experts in a field they never expected to explore. Anne Chateau is a retired teacher. Her son is 26. She published a first book in 2013 about Angelman children : Le syndrome d’Angelman, une maladie neurologique rare. Odile Piquerez was a personnel officer until she interrupted her career to look after her son, now 33 years old. She is involved in many associations which support handicapped people in fields such as accessibility, epilepsy, and care. The authors have founded the association Syndrome Angelman-France (WWW.syndromeangelman-france.org) They intend to translate extracts of the book into English and progressively to make their association’s website available in other languages. July / August 2015
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Angelman Sindromearen Historia (Basque Translation)
Angelman sindromea izenarekin ezagutzen dugun eritasuna Harry Angelman mediku ingelesak identifikatu zuen. Angelman doktorea Birkenhead-en, Ingalaterran, jaio zen. Hala nola, Italiaren, baita haren hizkuntzaren, zale amorratua izan zen. Antzeko sintomak zituzten hainbat familiatako hiru ume aztertu zituen Angelman doktoreak. Hirurek ibilera zurruntz eta koloka zuten, hainbat motrizitate arazorekin batera. Atzerapen intelektual latza eta epilepsi krisiak ere bazituzten. Hitzik ez egin arren, jokabide zoriontsua erakusten zuten. Italian oporretan zegoelarik, Veronako Castelvecchio museoan Giovanni Francesco Caroto artista errenazentistaren Mutiko bat txotxongilo batekin izeneko olio-pintura ikusi zuen Angelman doktoreak. Aurretik aztertutako umeak gogora ekarri zizkiola, 1965ean “txotxongilo umeak� deskribatuz argitaratu zuen txosten bat, baina bere lanak ez zuen arreta handirik jaso une hartan.
Dr. Harry Angelman 1915 – 1996
Horrezkero 1982 urtera arte sindrome hura hain arrunta zenik ez zen nabarmendu, Florida Unibertsitateko Medikuntza Fakultateko Charles A. Williams eta Jaime L. Frias ikertzaileek American Journal of Medical Genetics aldizkarian sei gaixoen deskribapena argitaratu arte. Genetikako Pediatria Sailan ikertutako sei umeek garapenaren atzerapen latza, txotxongiloen antzerako ibilera, burezur eta aurpegiko anomaliak eta maiz barre egiteko ohitura zuten. Aurretik argituratuko aztergaiekin parekatuz, eritasun multzo hori Angelman Sindromea izendatzea proposatu zuten.
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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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