Purchase
Jay and Brenda, parents of a 1 year old daughter with TAR Syndrome, made these vinyl stickers for their own personal vehicles. After some friends and family were also interested in them for their vehicles, they thought about selling them and donating the proceeds to help raise awareness. We have added a sticker pack with "I Love Someone With TAR Syndrome".
TAR SYNDROME AWARENESS VINYL
Color: WhiteSize: 5"w x 4"h
$10
$5 of each vinyl purchasedwill be donated to Uniquely Me Foundation
Free shipping, USA shipping only.
I LOVE SOMEONE WITH
TAR SYNDROME STICKERS
Color: MultiQty: Pack of 6
Size: 3"w x 3"h
$10
$5 of each sticker set purchasedwill be donated to Uniquely Me Foundation
Free shipping, USA shipping only.
Donate
If you'd prefer to donate without receiving a vinyl, you can do so here by clicking one of the payment options below, where you can fill in a custom amount to donate. Any amount is appreciated and will be 100% donated to the Uniquely Me Foundation.
What is TAR Syndrome?
Thrombocytopenia Absent Radius (TAR Syndrome) is a rare genetic condition affecting roughly 1:200,000 births. It is characterized by very low levels of platelets (which help your blood clot) and missing the radial bone, in each forearm. There are many different variations of how people can be affected by TAR Syndrome.
Missing additional arm bones and different lower limb differences, such as missing knee joints are common. People can also have heart and kidney problems, or bowed legs, as well as dairy allergies.
The greatest mortality risk for a person with TAR is during the first two years of life. Because platelets and sometimes red blood cell levels are unpredictable and low, the risk of hemorrhage from an injury is much higher. Frequent transfusions are common to keep platelets in a safe range, particularly while kids are young. Typically platelet numbers improve and stabilize beginning around age two which reduces the need for frequent transfusions.
Rare disorders are financially challenging. Because it is rare, there is not enough research devoted to the syndrome, which means limited knowledge and resources.
Families often travel far distances to see specialists, to receive therapies and devices. Often treatments take you away from home for weeks or months at a time.
The most important thing to know is that these kids and adults are strong, they are determined and they are unstoppable. They are artists, teachers, writers, nurses, professionals, dancers, and athletes. Challenges are overcome every day. These families are strong, creative, adaptive and unique!
Uniquely Me Foundation
Uniquely Me is a 501c3 non-profit dedicated to raising awareness and education of TAR Syndrome and other rare limb differences. We are here to support, celebrate, and unite our uniquely unstoppable warriors and families in our communities.
Our mission is to bring together and celebrate the amazing people and families living with limb differences and other rare disorders
- Creating Awareness, Community Education
- Providing Resources and Information
- Donating books to educate about limb differences in community
- Supporting new parents and donating books and uniquely perfect clothes for limb differences to NICU’s
- Linking Families Together
- Provider and Therapy Collaboration
- Events to Bring Our Limb Different and TAR Community Together