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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 caregivers and physicians around the world.

“The findings of this research will be a key step towards identifying and developing the best outcome measures and biomarkers for future clinical trials,” says Dr. Tom Willgoss, principal scientist, Roche.

 The study signals a new movement into the human testing phase of possible drug and therapy development for Angelman syndrome.

“To have such a cutting-edge biotech giant join all of us in the quest for a treatment and cure for Angelman syndrome is a very hopeful sign of significant movement for our families who struggle with the impact of this disorder,” says Dr. Allyson Berent, DVM, DACVIM, chief science officer for FAST (Foundation for Angelman Syndrome Therapeutics).

Dr. Stormy Chamberlain, chair of the scientific advisory committee for the Angelman Syndrome Foundation (ASF), agreed that this next phase of development in Angelman research takes a critical step in matching the needs of patients with Angelman syndrome to possible treatment and measurement strategies.

“We are all working together to determine the needs of families with Angelman syndrome in terms of new treatments and medications,” says Chamberlain.  

FAST and ASF joined efforts with Agilis Biopharmaceuticals to create the Angelman Biomarkers and Outcome Measures Alliance (A-BOM) in 2016. The alliance of foundations and biopharmaceutical firms works to help researchers identify the best ways to measure clinical progress in Angelman syndrome in an effort to design better trials to test the effectiveness of new experimental treatments. A-BOM is encouraging the families, caregivers and physicians of Angelman syndrome patients to participate in this effort by joining the Angelman registry. The registry assists researchers in collecting strategic information about the disorder from patients and their physicians. The registry can be found online at angelmanregistry.info.

“We need rigorous ways to measure how potential treatments may improve the quality of life for individuals with Angelman syndrome and their families,” says A-BOM’s director, Dr. Terry Jo Bichell. “Roche’s conceptual model will set a standard that will help researchers determine what to measure, how to measure it, and how to interpret their findings when they are trying to identify possible treatments.”

Initial findings for the first phase of the study are expected in 2017. The research team plans to interview the caregivers and clinicians of approximately 33 patients with Angelman syndrome in its sample.

About The Angelman Biomarkers and Outcome Measures Alliance (A-BOM)
The Angelman Biomarkers and Outcome Measures Alliance (A-BOM) is a new group formed by both FAST (Foundation for Angelman Syndrome Therapeutics) and the Angelman Syndrome Foundation, together with researchers and pharmaceutical corporations to help move new treatments to the clinical trial phase. A-BOM includes scientists, foundations and corporations that are all working together to share in research, studies, trials and stories to help people with Angelman syndrome.

Save the Date!

Save the Date!

The Angelman Syndrome Foundation is thrilled to announce the 2017 Scientific Symposium and Biennial Conference—your ultimate resource for all things AS.

ASF Scientific Symposium and Biennial Conference
July 10-16, 2017
Arizona Grand Resort & Spa

Arizona Grand - Signature Image

Arizona Grand - Oasis Event

Arizona Grand - Oasis Aerial

Arizona Grand - Golf Course
Thank You for Your Input!
Thank you to everyone who voted in the 2017 Conference location survey. The Arizona Grand site in Phoenix was chosen based on input from the AS community, and the ASF Conference Planning Team is hard at work planning the most engaging and beneficial programs and activities for all attendees.

Plan ahead!
The room rate for the Arizona Grand is $110/night. Use the Conference Budgeting Sheet in Excel or PDF formats to start planning for your trip to Phoenix today.

For those who plan on attending, join the ASF Conference Facebook group! This is where attendees will have the opportunity to discuss amongst themselves all things Conference related.

Many more details to come so stay tuned for future ASF Conference updates!

Looking for Families for Video recording at CASS Conference in Edmonton

Dear Parent/Caregiver:

Many families of individuals with Angelman syndrome struggle to cope with challenging and difficult to manage behaviors. These behaviors can have a major impact on family life and also prevent the individual from participating fully in activities at home, school or in the community.

The Canadian Angelman Syndrome Society (CASS) and the Angelman Syndrome Foundation (ASF) have created a series of instructional modules to help families understand and address challenging behavior in individuals with Angelman syndrome. These modules can be accessed at www.angelmanbehaviors.org.

We would like to enhance these modules by adding video clips of individuals with Angelman syndrome engaging in challenging behavior and demonstrating options for what parents and caregivers may do differently in these situations. In order to do so, we are seeking families who are attending the CASS conference in Edmonton and are willing to be videotaped interacting with their son or daughter and receiving coaching on Wednesday July 13 and/orThursday July 14, 2016.

If you are interested in volunteering to participate in videotaping during the CASS conference, please indicate you would like to participate by sending an email message to info@angelman.org. We will then get back to you with further details.

Please take a moment to respond to this very short survey regarding behaviors that are most concerning for you and your family. https://www.surveymonkey.com/r/ChallengingBehaviors_AS

This survey will close on Friday, June 24, 2016 at 11:30 p.m. CST.

Thank you in advance for considering this important opportunity to help the Angelman community.

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

AFSA

“I am happy to bring some help to the children of AFSA fight their diseases. If I can families to stay positive, I would be filled. 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 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

For more information visit

www.angelman-afsa.org

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Canadian Angelman Syndrome Society Conference in 2016

cass logoSave 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.

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.

We are pleased to announce that CASS has contracted Alberta AdaptAbilities to provide management of the Kids’ Program at our upcoming Conference, “Prospecting for Possibilities” scheduled from 13 to 16 July 2016 in Edmonton.

Alberta AdaptAbilities Association is a registered charity that provides one of a kind programs and services that adapt everyday experiences empowering individuals with special needs to grow, succeed, and belong. They provide caring, understanding, and structured environments for children and adults with special needs.

CASS Conference organizers look forward to welcoming AS families to Edmonton this summer and believe this collaboration with Alberta AdaptAbilities will provide our AS and child delegates with the “Animal Adventures” they and their caregivers will enjoy.

Attach a one-page summary of the 3-day Alberta AdaptAbilities program. Click here to download the program.Kids_Prog_3-Day

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

www.angelmancanada.org

 

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Holiday Gift Ideas

Lizzie Sordia hosted a live webinar for the Angelman Syndrome Foundation about Holiday gift giving ideas. Here is the video from the YouTube channel of the ASF. As talked about in the video, we have a link to the downloadable PDF of this presentation to help make shopping easier. The links to these products in the presentation work directly to the websites where you can purchase these items. Enjoy!
Download the PDF here: Links work to help you shop online.
Holiday Gift Guide

holiday gifts

Angels in Action – Melissa Adams

By Kat Adams

Cover Nov - Dec 2015Melissa 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.Melissa2

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 !

For more information about the Melissa Adams Foundation you can visit http://www.researchangelman.org.uk/

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