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918-490-3055

UCD Kids Camp 2018

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We have taken on the challenge of participating in a fundraiser to give kids affected by a Urea Cycle Disorder the opportunity to experience a very unique camp. This camp will be exclusive to UCD kids and parents giving them an opportunity to meet and connect with others just like them. We have partnered with Global Genes and Festival of Children Foundation to raise funds during the Rare Carousel of Possible Dreams. This fundraiser gives each participating foundation the opportunity to make a dream come true for its rare community. For our dream we have chosen a UCD Kids Camp for 2018.

Camp can be a fun, positive, and life changing experience. We want to give families in the Urea Cycle Disorder community a rare opportunity to connect with others like them in a way like never before. Parents and their children will meet others from different places around the country and get a chance to learn more about UCD’s further strengthening our UCD community in a fun atmosphere and environment. This UCD Kids Camp will have many fun activities like archery, arts and crafts sessions, hiking, boating, crab hunting, games, group activities, talent shows, and more. This is an environment that will host a UCD Geneticist to support our UCD needs, and a tailored UCD menu for all of our special dietary requirements.

The Rare Carousel of Possible Dreams (in conjunction with Global Genes and Festival of Children Foundation) is an event involving an actual carousel in which donations are made to the charity by riding the carousel a specified number of times. This can be an actual ride on an actual carousel, OR, it can also be a virtual experience for those who wish to participate but may not be able to attend in person. Connecting Families Urea Cycle Disorders Foundation has chosen to ride the actual LeRoy King Carousel in San Francisco on February 28th, 2018 with our friends and partners on Rare Disease Day.

 

 

Urea Cycle Disorders still affect one in 20-25,000 people. Most people affected by UCD’s have physical, cognitive, and developmental disabilities due to hyperammonemic episodes which is ammonia buildup in their blood stream. When elevated ammonia concentrations cross the blood-brain barrier it can cause brain damage, coma, and death. A genetic defect that results in the lack of an enzyme in the liver can severely impair the nitrogen processing/removal from people impacted by a UCD.

So many with a UCD never get the chance to meet others like them. Too many UCD kids never get the chance to do something fun with another UCD kid. Connecting Families UCD Foundation wants to change this but we need your help. Together we can make our dream of a UCD Kids Camp a reality in 2018.

We are forming our team now and we need riders just like you! Help us give UCD kids the chance to experience this amazing opportunity.

You can help by donating and/or getting involved to help us raise funds, click the link below to go to our fundraising page on the Festival of Children website.

Here’s what to do:

  1. Click HERE (after you read the steps) to go to the Rare Carousel of Possible Dreams fundraiser.
  2. When the website loads, click the “Join a Team to fundraise for a charity” (middle purple box).
  3. Under “Join or form a Team” enter Connecting Families UCD Foundation in the text box, then click search.
  4. After the search results loads, find us on the list then click the “join” button.
  5. Click on Carousel Rider , then enter a fundraising goal you would like to help with, then click next.
  6. You need to register as a new participant.
  7. If you have any questions please contact Robin Deleon at 918-490-3055 OR robin@ucdfamily.org OR on our team Facebook page.

Together let’s make this dream come true for our UCD kids!

Thank you for your love and support,

Robin Deleon/Exec. Dir./CFUCDF