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The Global Angelman Syndrome Registry
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…
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Angelman Biomarkers and Outcome Measures Alliance and Roche begin patient-centered qualitative research to inform potential outcome measures for Angelman syndrome clinical trials
Nashville, Tenn. (June 22, 2017) – A collaborative group of parent-driven organizations seeking a cure for Angelman syndrome has teamed up with F. Hoffmann-La Roche Ltd, (Roche), one of the world’s largest pharmaceutical and diagnostics companies, in the first phase of a study that will support the design of human clinical trials and treatment development for the disorder. Roche has committed funding to create an Angelman syndrome conceptual model. Roche as a leader in personalized healthcare is taking a patient-centered approach to drug and treatment development. According to Roche, the first phase of the study aims to better understand the impact of Angelman syndrome on patients and their families through interviews with…
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What Angel Parents are saying about the Kayserbetten bed
“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…
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Helpful Products For Back To School
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. Under Huggers – Soothing pressure kids can wear all day for…
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Back to School Safety Products for Special Needs
Safety is always the number one priority for our loved ones with special needs. Here are just a few products that are high on our list. 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. Save $ on your first order by using promo code: Angelman Todaywww.ifineedhelp.org GPS Trackers are becoming…
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Angel Goes Packing
By Alisa Guilietti Hi, my name is Nicolas and I am a 15-year-old who has Angelman Syndrome (AS). It’s a rare genetic disease affecting my 15th chromosome. For me, it means I speak only two words rarely, my walking is unbalanced, I need help with a lot of my daily activities and I really like getting into things, so someone needs to be around me all of the time. I am also generally a very happy guy. I can’t write, but my mom knows me pretty well, so she’s writing what she thinks I would say if I could. Over ten years ago, when I was four, our family learned…
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Get Started On The High-Fat, Low-Carb Diet
Let’s start with listing 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. Use the best quality fat sources. Eat real unprocessed foods will be the key to success. We have created a helpful resource within the Ultimate Amazon Special Needs Shop – Dietary Therapy Category. We have listed helpful books and healthy fat options that you can get delivered right to your door. Diet therapy could be challenging as most things are but it will be worth it! Amazon Prime…
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KayserBetten beds and how they can provide a safe night’s sleep for you and your Angel.
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 www.KayserBettenUS.com 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…
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Treating Constipation
Treating Constipation Easy tips for treating constipation – A common symptom of Angelman syndrome. When you see constipation listed as a symptom of Angelman syndrome, do not lose hope that it cannot be treated. A diagnosis of Angelman syndrome does not necessarily mean one is destined to suffer from all of the symptoms often associated with the genetics. Many individuals that follow these easy steps are able to have healthy digestion without medications, enemas or natural laxatives. Here is what you can do: Eat a whole food, high-fiber diet.Add 2 tablespoons of ground flaxseeds to your daily diet.Eat healthy fats like avocado, olives, olive oil, grass-fed butter, coconut oil and…
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Adaptive Clothing Line by Tommy Hilfiger
Check out the latest line of adaptive clothing to hit the Runway! SHOP OUR NEW KIDS ADAPTIVE CLOTHING COLLECTION! Tommy Hilfiger Adaptive Line on Amazon
