PKU News is pleased to announce that we are partnering with Rare Science, a non-profit focused on raising awareness and funds to support development of therapies for children with rare diseases, to deliver Rare Bears to children with PKU in celebration of National PKU Awareness Month in May 2018. Please review the FAQ below and if you’d like to request a Rare Bear, click here or on the button at right.
A Rare Bear is a one-of-a-kind, hand-sewn teddy bear made by volunteers working with Rare Science, and provided to a child with a rare disease. See samples here
No. Rare Bears are sewn and distributed free of charge by Rare Science.
Rare Science requests that you upload a picture of the child who received the Rare Bear, with the bear, to their web site. They have a gallery of Rare Kids & Bears, and they share the photo with the volunteer who created the child’s bear. There is an agreement on the Rare Science site that is part of the process for requesting a Rare Bear. Although it mentions video/interviews, this only pertains to “live gifting events” which are sometimes done at conferences. For this campaign, individuals will receive their bears in the mail.
The Rare Bear program is geared toward children (as is the mission of Rare Science) and we’d prefer to honor their request that bears go to those 19 years old and younger. But they do have a few bears available to adults. Please contact us
if you’d like to request one. For this campaign, we need to limit it to the first 10 adults to request a bear.
Adults with PKU, we know you sometimes feel like this:
But don’t worry, you are not forgotten: We have a PKU awareness program for adults about to launch. Keep an eye out in the newsletter and on Facebook and Twitter.
When a child receives a Rare Bear, if their parents/guardians are willing, we’d like you to post a picture of the bear (with the child, and any details you are comfortable sharing) to our Facebook page.
We’ll share these photos daily during May to celebrate these members of the PKU community.
You’re welcome to request a Rare Bear through this project provided you have an allied disorder that results from an inborn error of metabolism detected by newborn screening which requires metabolic formula and a low-protein diet.
In order to get your bear in time for PKU Awareness month, please place your request no later than March 20th, 2018.