Angelman Today has received an exclusive invitation to create a shop on Amazon!
We filled it with so many products suggested by parents and caretakers.
The shop includes Sensory Toys, Support for Communication, Feeding Tools, Safety Products, Adaptive Clothing, Books, and many more products to help with daily life.
This shop will be updated often with new products so check back often. If you would like to suggest a product not yet listed please leave us a comment on our Facebook page or email us at firstname.lastname@example.org
“This shop on Amazon made holiday shopping for my Angel so much easier and I could easily send the link to my friends and family when they asked what to get my daughter for Christmas.”
It is hard to believe that it has been a year since the Global Angelman Syndrome Registry was launched. This project is now the largest ever Angelman syndrome study to date, with over 450 participants, call us greedy but we want more. There are over 7000 people that “like” the Angelman Today Facebook page, we know that we can increase these numbers drastically and we want to take some time to explain to you why you should care and how your participation can shape Angelman syndrome research right now.
To borrow from Rare Disease advocate Sharon Terry in her Ted talk, “Researchers don’t share. People told us you can’t herd cats. Well, yes you can, if you move their food. DNA and clinical data is the food.”
The story of your individual with Angelman syndrome is extremely powerful, it is even more powerful when combined with stories around the world. Investigators save huge amounts of time in the initial stages of projects without the need to collect information to test questions, get answers and ask more questions. To develop research projects, recruit for clinical trials and even measure their effectiveness. It’s a win-win, researchers don’t need to find funding for investigative work and we don’t have to fundraise for that to happen!
The registry is already working! Research applications and requests to share online studies have been sent to registry participants. FAST has had grant applications where the intended recruitment is through the patient registry which is proof of how valuable a tool this is.
If you grant permission, you can be emailed about participating in online studies, research projects and clinical trials. The people doing this study will NOT be given your name, you will be contacted by the registry curator to ask your consent again first where they will give you contact details or links to find out more.
If you are reading this and saying “ I really should do this one day”, here is a 3 step guide to getting your entry off the ground quickly. (these are only guidelines; you can do this quicker)
- Right now – Visit angelmanregistry.info … what are you waiting for? Click on “Register now” and It will take you two minutes to register for a login. (you do not have to nominate a supervising clinician at this stage, you can do that later)
- Schedule an hour within the week – Make sure you won’t be interrupted, ideally when kids are at school or in bed. Get a notepad and pen. Systematically work through the registry modules. There are a lot of questions, you don’t have to do them all I one hit. When you stumble and can’t remember a date, or its asking to upload results, make a note of what it is so that you can come back in step 3.
- Diarise to hit social media (within 14 days from today). I’m serious! The nature of social media means we often celebrate our children’s achievements, but also their struggles. Grab a pen and write some dates down – milestones, seizures etc. (you might also have a baby book or a file with dates and test results). This should help with the lingering questions you had at step 2. The neurology module is difficult, whilst a lot of us have pseudo degrees in neuroscience the terminology has recently been updated, if you have issues you can contact the registry curator email@example.com (she is based in Australia so depending on the time of the day you may not get an immediate response), or talk with your health professional.
We are aiming to hit 1000 by the end of 2017 – will you help us build this amazing Angelman resource and speed up our journey towards a cure?
Visit angelmanregistry.info to join the project or access the data.
Here are some tips to help make your Halloween experience a little more “Happy” and a little less “Tricky” when you have a child with Angelman Syndrome. There is lots of fun to be had when participating in community Trick or Treating or attending Fall Festivals. We want our children to participate and be accepted in these activities.
Select the right costume!
Be careful when selecting a costume. The material that some of the costumes are made from can cause sensory issues. Consider the weather. Will they need a jacket or sweater as the night falls or will the costume cause them to overheat? Avoid masks, capes or accessories. Face painting would depend on the individual child and how they respond.
For those with complex communication needs, it is important to participate in activities with their peers. This Halloween we wanted to share these FREE cards and stickers to help make things easier. When Trick or Treating this year, your child can hand the cards to the person at the door or wear the adhesive badge on their costume. Download and Print for FREE! Share with your friends!
Download the Stickers (Avery adhesive labels) below:
Here is the Go Talk device that you can program for a single image.
Download the Halloween Cards below:
Download the Happy Halloween Cards AS PDF here
Download the Happy Halloween Cards – Autism PDF here
October is AAC Awareness Month! We wanted to compile an easy list for you to view the many options that are now available. Some of these apps are on sale from 50-75% OFF! Click the links from your device to download quick and easy.
Proloquo2Go – 50% Discount from October 10,11,12.
Avaz is now offering a 50% Discount from October 1-15th
TouchChat HD – AAC with WordPower
aacorn AAC – 50% OFF Discount and Free 14 day trial
Go Talk Now
Tobii Dynavox SNAP – 50% Discount
My First AAC
“Justin absolutely loves his bed, he goes to it right after his bath every day after school for his nap! He takes me by the hand to lead me there, lol. We got it last December for my house. It took me a little over a year to get him one at his father’s house since his old Vail bed had been recalled years ago and we didn’t know ’til I got his first bed! Now he is safe at both houses with this awesome bed! He sleeps 2 1/2 hours every day after school and from 11 pm ’til 6:30 am each morning!”
– Barbara Barclay
For more info visit www.kayserbettenus.com
Here is a list of products to help you prepare for getting the kids back to school! I’m sure you already have your basic list of school supplies so we wanted to tell you about some of these not so common products that may help. We included a few wearable items to support sensory needs. Compression clothing and weighted vests can help calm and improve focus. We also included a unique item we just discovered for those that like to dig and I’m not talking about the sandbox.
Fun and Function is a favorite site for the full spectrum of products they offer.
There are so many communication apps available for the Apple ios, leaving Android users feeling left out. We are happy to share with you a FREE communication app now available for Android!
About the app from Google Play: AngelTalk was built to help the children with complex communication needs talk with their parents and caregivers quickly and pleasantly. It is suitable for those who just decided to start using Augmentative and Alternative Communication Tools.
The app is originally designed to promote language development and grow communication skills of people with Angelman Syndrome. However, we hope this app can be used by people with autism, cerebral palsy and other diagnoses. It is available in English and Korean.
Real image and voice based AAC
The app has a very good rating 4.8 out of 5 Stars!
Check out this YouTube video of the pure joy of Jungmin, a 13-year-old with Angelman Syndrome from Korea.
More information, including tutorials, can be found on their website https://www.angeltalk.info/en/index.html
Android Tablet available on Amazon
Safety is always a number one priority for our loved ones with special needs. Here are just a few products that are high on our list this year.
If i Need Help is a collection of wearable QR codes made for our loved one that may wander. The QR codes can be scanned to reveal contact information for guardians and any specific details that you would like to include about the individual in case of emergency. This information will be kept in a live working special needs registry that is created and controlled by the caretaker.
Get 5% off your first order by using promo code: Angelman Today
GPS Trackers are becoming very popular and even considered essential in the special needs community for individuals that may wander. Many devices are now made with easy tracking available through your iPhone or Android phone. There are several types of trackers now available from a wrist watch to devices that can attach to a belt loop or fit in their cargo pocket. Here are just a few that we found:
We will start with healthy fat options that may not be so easy to find at your local grocery store. It is important to note that when starting a high fat therapeutic diet make sure you are being followed by a medical professional and using the best quality of fat sources. Here are links to order on amazon.com to get it delivered right to your front door.
Here is the list of healthy fat sources: Coconut Cream, Organic Ghee, Grass Fed Butter, Extra Virgin Olive oil, Coconut Oil, MCT Oil, Avocado Mayo, Avocado Oil, Duck Fat, Beef Fat, Black Olives, Green Olives, Kalamata Olives, and Roasted Walnut, Hazelnut and Avocado Trio Oils.
The KayserBetten bed is one of the most highly recommended beds by parents of children with Angelman Syndrome. This bed will meet your child’s medical, safety and behavior needs.
One comment we keep hearing from parents is how well THEY sleep at night knowing their child is safe in their room.
The beds are spacious, call and find out the right size for your child.
The KayserBetten bed may be eligible through your insurance provider.
For more info call 1-800-574 ext. 308
If you have a KayserBetten bed and would like to share your story with us, it could be featured in the next edition of Angelman Today. Email the editor at Lizzie@angelmantoday.com