ANNOUNCEMENT:
The 2021 Dup15q Alliance International Family Conference
will be held 7/8/2021 – 7/10/2021 in Denver Colorado!
Stay tuned for more info!!!
Our Mission
Through our work to raise awareness and promote research into chromosome 15q duplications, we seek to find targeted treatments so that affected individuals can live full and productive lives. Together with our families, Dup15q Alliance is working towards a better tomorrow for children with chromosome 15q11.2-13.1 duplication (dup15q) syndrome.
LASTEST NEWS
RESEARCH UPDATES
UPCOMING EVENTS
Dup15q Alliance is proud to partner on several projects with the Child Neurology Foundation moving the entire community forward to achieve our goals.
Upcoming Webinar Communication Strategies to Improve and Prevent Challenging Behaviors for Minimally Verbal Children
Oct. 6, 2020 at 12 p.m. PT/1 p.m. MT/ 2 p.m. CT/3 p.m. ET
CNF is proud to announce our upcoming webinar on Communication Strategies to Improve and Prevent Challenging Behaviors for Minimally Verbal Children. Many families grapple with how to manage difficult behaviors in children with a neurologic disorder; especially children who have limited communication abilities. We ran a survey of nearly 2,000 families and found that only 10 per cent of respondents reported that they didn’t have behavior concerns. Harmful and disruptive behaviors are very difficult to manage - but you are not alone in your search for answers.
During this hour-long webinar, Dr. Nina Gerencser from the Marcus Autism Center will discuss strategies to reduce challenging behaviors and provide recommendations to teach alternative appropriate behaviors for children with communication challenges. We hope you will join us for our webinar. If you are unable to make the live event, please still register so we can send you a link to watch the recording.
Register: ow.ly/ADMI50BBiTE
#Dup15q #ChildNeurologyFoundation
10 hours ago
****JOIN US IN 5 MINUTES!***
Please remember that this will not be recorded.
We are proud to partner with Angelman Syndrome Foundation and DEE-P Connections to co-host this 2-part series of Intelligent Lives.
INTELLIGENT LIVES challenges what it means to be intelligent, and points to a future in which people of all abilities can fully participate in higher education, meaningful employment, and intimate relationships.
9/24/20 at 5pm EST - Register Part 1: us02web.zoom.us/webinar/register/WN_X310GCwWQLiAFGM-IXErUg
us02web.zoom.us
From award-winning filmmaker Dan Habib comes INTELLIGENT LIVES, a catalyst to transform the label of intellectual disability from a life sentence of isolation into a life of possibility for the most s...1 day ago
Dup15q Alliance is proud to partner on several projects with the Child Neurology Foundation moving the entire community forward to achieve our goals.
Upcoming Webinar Communication Strategies to Improve and Prevent Challenging Behaviors for Minimally Verbal Children
Oct. 6, 2020 at 12 p.m. PT/1 p.m. MT/ 2 p.m. CT/3 p.m. ET
CNF is proud to announce our upcoming webinar on Communication Strategies to Improve and Prevent Challenging Behaviors for Minimally Verbal Children. Many families grapple with how to manage difficult behaviors in children with a neurologic disorder; especially children who have limited communication abilities. We ran a survey of nearly 2,000 families and found that only 10 per cent of respondents reported that they didn’t have behavior concerns. Harmful and disruptive behaviors are very difficult to manage - but you are not alone in your search for answers.
During this hour-long webinar, Dr. Nina Gerencser from the Marcus Autism Center will discuss strategies to reduce challenging behaviors and provide recommendations to teach alternative appropriate behaviors for children with communication challenges. We hope you will join us for our webinar. If you are unable to make the live event, please still register so we can send you a link to watch the recording.
Register: http://ow.ly/IMzy50BBj1M
#Dup15q #ChildNeurologyFoundation
🌎We are excited to announce the winning T-Shirt Design for our Junior Believe Ambassador (JBA) Summer Engagement Program! The shirts will be sold in our upcoming Pop-Up Store in youth and adult sizes along with other new and giftable items from October 6th-18th!
🌎Thanks again to everyone's participation and a special Congrats to Thomas and Mary Claire, cousins of Bobby, who has Dup15q Syndrome!
🌎Stay tuned for details on our JBA Fall Engagement Program in the next few weeks!
#Dup15q #JBA #TogetherWeBelieve
We are proud to partner with Angelman Syndrome Foundation and DEE-P Connections to co-host this 2-part series of Intelligent Lives.
INTELLIGENT LIVES challenges what it means to be intelligent, and points to a future in which people of all abilities can fully participate in higher education, meaningful employment, and intimate relationships.
9/24/20 at 5pm EST - Register Part 1: https://us02web.zoom.us/webinar/register/WN_X310GCwWQLiAFGM-IXErUg
10/1/20 at 5pm EST - Register Part 2: https://us02web.zoom.us/webinar/register/WN_UfkKW3bsSW6_UFw0DxJrZg
Trailer: https://www.youtube.com/watch?v=r7qEJFpMWNk
#Dup15q #IntelligentLives
Dean is THE coolest kid around! Who wouldn't want to hang with him!?!?
#Dup15q #SuperDuperHeroes
"Awareness for Dup15q Syndrome is so important to me because first, I like to show that people with special needs need people to understand what they go through. Growing up, I remember sooo many people being picked on and if I ever thought that was happening to Tucker, scary things could happen. And secondly, I need, need, need to show that Epilepsy research is nowhere near where it should be. We need new meds, badly. LGS (Lennox-Gastaut Syndrome) is known for being medicine resistant. We’re blessed with a neuro that will not give up because we know eventually we could strike gold and if we don’t, we’ve tried our absolute best that we could.” – Shannon Davison mom to Tucker
http://ow.ly/lBG150BxdCg
#Dup15q #TuckersStory #LGS
As the author of the landmark Olmstead v. L.C. decision, Justice Ruth Bader Ginsburg freed Americans with disabilities from a life of segregation and isolation by affirming the right to live and receive services in the community of their choice.
Her opinion also expanded the protections of the Americans with Disabilities Act to people with mental health disabilities.
We thank Justice Ginsburg for her lifetime of service and hope she continues to inspire others to defend the rights of people with disabilities for decades to come.
For more information on Olmstead: http://ow.ly/ZvBd50BwR3L
*Intelligent Lives Registration Reminder*
*Unfortunately, a playback will not be available, so registration is needed for these viewings.*
9/24/20 at 5pm EST - Register Part 1: http://ow.ly/71tm50BwR3J
10/1/20 at 5pm EST - Register Part 2: http://ow.ly/oqva50BwR3N
#Dup15q #RBG #IntelligentLives #ADA
Enjoy this Sunday read!
We Live in a Space Between Questions and Answers for Our Medically Complex Children-written by Dup15q Parent, Eileen Flood OConnor.
https://themighty.com/2019/02/space-between-questions-and-answers-medically-complex-children/
#Dup15q #TheMighty
2021 International Family Conference will be held in Denver, Colorado!
Science Conference 7/7/21 - 7/8/21
Family Conference 7/8/21 - 7/10/21
Westin Hotel-Westminster, Colorado
*Please stay tuned for more information in a few months for reservations and block codes.
*It is still being planned as an in-person event, however, we are prepping for some live streamed sessions.
*Join us in the Conference Facebook page or visit our website for updates and news as planning is underway!
#Dup15q #2021CO #MovingMountains
We are proud to partner with Angelman Syndrome Foundation and DEE-P Connections to co-host this 2-part series of Intelligent Lives.
INTELLIGENT LIVES challenges what it means to be intelligent, and points to a future in which people of all abilities can fully participate in higher education, meaningful employment, and intimate relationships.
Register Part 1: https://us02web.zoom.us/webinar/register/WN_X310GCwWQLiAFGM-IXErUg
Register Part 2: https://us02web.zoom.us/webinar/register/WN_UfkKW3bsSW6_UFw0DxJrZg
Trailer: https://www.youtube.com/watch?v=r7qEJFpMWNk
#Dup15q #ASF #DEE-PConnections #IntelligentLives
🧬Thanks to your support and donations, the NEW 15q Clinical Research Network website is now live!
🧬The 15q Clinical Research Network is a collaboration between the Angelman Syndrome Foundation (ASF) and Dup15q Alliance. The ASF and Dup15q Alliance partner with leading medical and research institutions from around the world to provide expert medical care for individuals with Angelman Syndrome and Dup15q Syndrome.
🧬To find information about all clinics, appointment contacts, LADDER and more visit: 15qclinicalresearchnetwork.org.
#Dup15q #15qClinicalResearchNetwork
The Dup15q Alliance recognizes the importance of working together to achieve common goals through partnerships with other groups and initiatives that are focused on improving the lives of those with rare disorders. Check out some of our partnerships and initiatives that are focused on improving the lives of those with rare disorders on our newly added Partnership page found on our website!
https://dup15q.org/category/partnerships/
#Dup15q #Partnerships
Did you know our partners at the Epilepsy Foundation provide free Seizure First Aid Certification training?
The Seizure Recognition and First Aid Training certification program provides information and skills to recognize seizures and safely help someone during a seizure. The first aid procedures in the guide reflect the standard of knowledge and current best practices. This information is presented in a format suited for direct training of the public. Participants who successfully complete the course will receive a two-year certification.
September 10, 2020, at 4:30 p.m. ET / 1:30 p.m. PT
September 19, 2020, at 11:00 a.m. ET / 8:00 a.m. PT
#Dup15q #EpilepsyAwareness
👟Let's give a HUGE shout out to Hannah Wendt who committed to Run for Reason in the Boston Marathon in honor of Avery. The Boston Marathon was postponed, however, Hannah still raised $450!
👟YOU too can Walk or Run for a Reason-Register Today!!!!
👟https://dup15q.networkforgood.com/projects/100698-walk-for-a-reason
#Dup15q #WhatWouldUDo4Dup15q #WalkForAReason
** DO YOU KNOW WHAT COMP ED IS? **
In March 2020, the U.S. Department of Education published guidance about the COVID-19 pandemic that included a statement that got the attention of many people:
"Where ... there has been an inevitable delay in providing services or even making decisions about how to provide services, IEP teams must make an individualized determination about whether and to what extent compensatory services may be needed when schools resume normal operations."
Compensatory Education, often called ‘Comp Ed,’ is how school districts can ‘make up’ missed IEP services and teaching that wasn’t provided or inadequately provided. It can include a reimbursement fund for parents to pay for those missed services privately, for instance. You must document a loss of skills/progress/behavior to get comp ed. Data from home can be considered.
Please read your State’s Department of Education guidance on comp ed. Here is Pennsylvania’s, which says the school needs to assess each student’s levels and start skill recoupment programming as soon as school starts, and the IEP team must determine if Comp Ed is warranted within 3 months of starting school.
#Dup15q #DidYouKnow?
🌏We are so very proud of all the efforts put forth from our International Committee!🌏
#Dup15q #InternationalCommittee
☀️Greyson brings sunshine into the lives of everyone he meets!☀️
#Dup15q #SuperDuperHeroes
Did YOU Know our IEP/Education Committee has a Resources area?
https://dup15q.org/family-support/resources
#Dup15qDidYouKnow
🙂Amazon Smile is now on the app! Be sure to update the app to the latest version!
🙂Amazon donates 0.5% of the price of your eligible Amazon Smile purchases to the Dup15q Alliance when you select us as your charitable organization!
#Dup15q #Dup15qAlliance4AmazonSmile
👟Walk for a Reason and make those miles count to support the Dup15q Alliance!
You don't have to run a marathon to make an impact. Pledge to Walk for a Reason and earn a customized Dup15q Alliance performance shirt!
👟Whether you pledge to walk 1 mile a week or 5 miles a day, you set the pace. Rally your friends, family and networks to support your pledge!
👟https://dup15q.networkforgood.com/projects/100698-walk-for-a-reason
#Dup15q #WalkForAReason
The Dup15q Alliance recognizes the need to present current research findings in a format that is understandable for our community. Therefore, we plan to periodically post research summaries that help to communicate the findings in terms that help to answer the following questions: “What does it mean? How does it work? What is the goal?” in terms that are easy to understand. This initiative is being led by one of our Dup15q parents, JoAnne Mosel, in partnership with Joe Elassal, MD, who is a member of the Board.
We are proud to share our first research summary here: https://dup15q.org/mechanisms-underlying-the-eeg-biomarker-in-dup15q-syndrome/
#Dup15qResearch
This site is intended to provide basic educational information about chromosome 15q11.2-13.1 duplication syndrome. It is not intended to, nor does it, constitute medical or other advice. Readers are warned not to take any action with regard to medical treatment or otherwise based on the information on this web site or bulletin board without first consulting a physician. Dup15q Alliance does not promote or recommend any treatment, therapy, institution or health care plan.
The information contained in this site is intended for your general education and information only and not for use in pursuing any treatment or course of action. Ultimately, the course of action in treating a given patient must be individualized after a thorough discussion with the patient’s physician(s).
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