16th Anniversary Celebration

As we celebrate our 16th anniversary in these unprecedented times, we are inspired every day by our Dup15q Families with their strength, dedication, and perseverance. Because of the support from our Dup15q Community, we continue to push forward and make an impact in Research, Partnerships and Family Support.

Research into Targeted Treatments for Dup15q Syndrome Continues

• LADDER database is aimed at improving patient care and treatment. It will offer information to care givers about a larger population of patients, allowing better informed decisions regarding treatments and interventions.

• 15q Clinical Network will bring together leading clinicians from around the world who specialize in 15q disorders to our 20+ clinics.

• Dup15q Alliance continues to support research grants

• Dr Ben Philpot –This project will generate new mouse models for the study of how extra UBE3A copies confer risk for seizures. ($50,000 annually)

• Dr. Gilles Trave – This project studies the interaction between UBE3A and HERC2 and it’s impact on brain development and will build the first ever 3D structure of UBE3A with and without HERC2.($100,000 annually * This project is jointly funded by Dup15q Alliance and Angelman Syndrome Foundation.)

• Vidya Saravanapandian- This project focuses on understanding the mechanisms underlying EEG biomarkers in the (Dup15q) Syndrome. This will enable early diagnosis, prognosis, and aids in developing treatment-targets .($25,000 annually)

• Dr. Charlolette Desteffanio – This project will evaluate the use of a telehealth model of conducting remote assessments of development and clinical characteristics of children diagnosed with Dup15q Syndrome. ($25,000)

New Committees and Programs are being developed with resources and support that will further strengthen the Dup15q community.

• Adult Life Committee –Focus is to gain a better understanding of the various Transition aspects as they are anticipated and/or experienced by families and develop the resources and strategies which will help families achieve successful outcomes.

• Junior Believe Ambassador Program – Focus is to engage grade school age siblings, relatives and friends of those diagnosed with Dup15q, to become ‘Junior Believe Ambassadors by creating seasonal engagement programs that help develop compassion, awareness and community.

• IEP Education Committee –Focus is to support parents in navigating the complexities of the IEP process by creating Dup15q Specific educational resources as well as offering a virtual “help ticket” for support.

• Families in Crisis and Counselor Program –Focus is to provide care packages to families while they are in the hospital. Dup15q alliance also offers counseling services at no charge to our families

• Clinical Travel Grant – Focus to help families who have a need for their child seen at a Dup15q Clinic, but do not have the means to do so.

For a full list of our committees please visit: www.dup15q.org/committees/

Your donation will go directly towards

Family Support and Resources

Supporting Committee Initiatives and Programs

Family Access to our Dup15q Alliance Counselor

Family Grants to travel to a Dup15q Clinic

– Paul and Anne Karch – David and Rosemary Gifford 

– Steve and Kathleen Kadner – Andrea True

Windchaser Wine Co.

Drop Support harness is a unique, upper body harness that wraps around the user’s waist, chest and torso, with an attached central handle running the length of the torso. The support handle is a point of contact between the user of the harness and the person assisting the user (“assistant”). https://www.dropsupports.com/ https://www.amazon.com/Drop-Support-Harness-Preven…

The Safe Place Travel Bed is an inflatable safety bed designed for special needs children. It attaches securely to any stationary bed, and many customers use them at home as well as when they travel with their special needs loved one. This bed only option includes the bed and straps. https://safeplacebedding.com/products/safe-place-travel-bed-blue-bed-only

Adaptive Tech Solutions is a therapist owned and operated company and we strive to provide adapted equipment for individuals with disabilities at affordable prices. https://www.adaptivetechsolutions.com/

Compression clothing started by a Dup15q Family in honor of their busy body, CJ. The compression clothing helps children who are hyposensitive and crave constant input; they love jumping, bumping and crashing activities, as well as deep pressure such as that provided by tight bear hugs and squeezes. Busy Body compression clothing is functional yet stylish. These one of a kind designs were created so children can wear them as under-wear or also as outer-wear and can double as swimwear.  Available in sizes child to youth.  https://busybodykids.co/

Independent Rep: Kait Curtis donating 25% is all sales made through this party link.  https://www.myzyia.com/32534/shop/catalog.aspx…

ZYIA Active is an active lifestyle brand. It is also a culture that believes in embracing activity with excitement, vigor and delight. We feel that pushing your body and mind is easier and more fun with friends and family. Our mission is to inspire and uplift by making activity a fun and essential part of life.

Independent Rep: Amber Dehn is donating 20% of all sales made through this party link. https://amberdehn.norwex.biz/en_US/customer/shop

Norwex Global Mission is Improving quality of life by radically reducing chemicals in our homes. Norwex is now the most prominent Microfiber company advocating for using far fewer harmful chemicals in our homes.

Independent Rep: Amanda Bryne is donating 25% of all sales made through this party link.

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