Cup Of Hope Chili Cook Off 2016 @ Central Texas Speedway

Join us for chili, beer and music at our inaugural Cup of Hope Chili Cook-off at Central Texas Speedway in Kyle, TX! We will have fun and games for the whole family. Central Texas Speedway also offers go-kart races at $20 per race and we will have a “Race for Rare” go-kart tournament benefitting U.R. Our Hope! If this is the success we think it will be, we hope to make this an annual event. So come on out and support the cause!

For the cook-off, teams of up to 4 people are permitted with only ONE Head Cook designee. Entry fee for teams will be $20. Register Below! Visit our website for complete rules and registration. Prizes will be awarded for the Top 5 Chili’s along with one winner of the Popular Vote. Every team will receive a goodie bag for participation. Registration Deadline is Friday, February 5, 2016!

The event is FREE to the public and you will have a chance to taste some amazing chili! Tasting cups will be sold at $2 per cup and you will get to vote for your favorite.

We will also feature vendor booths of local non-profits also assisting the Rare Disease Population. Some of the groups include The PURa Foundation, Costello Syndrome Family Foundation, Parking Mobility, CPATH, and more! Please stop by and learn more about these Rare Diseases and how you can help! Local Rare Disease Organizations, please reach out to us if you would like to partner with us for this event. Booth space is free, we just ask for a gift card donation for our raffle.

We are currently seeking sponsors, merchandise donations for goodie bags, and judges. If you are interested, please contact Vanessa Vaughan (vanessa@urourhope.org) [Note: Judges may NOT be related to cooks in any way.]

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// Who is U.R. Our Hope? 
U.R. Our Hope is a registered 501 (c)(3) non-profit organization that assists individuals and their families on their journey to diagnosis,or helps them navigate the healthcare system with a rare diagnosis. Our mission is to serve individuals with undiagnosed and rare disorders through education, advocacy, and support in order to bring hope through knowledge, empowerment, and healing. We assist families in the Austin area, and throughout Texas, the United States and beyond.

// Our Goal For 2016

This year, we are focused on continuing to bolster our family travel fund which will pay for transportation, lodging and food for families traveling out-of-town for medical appointments. We are also starting a fund to help families pay for Whole Exome Sequencing. Whole Exome Sequencing is a genetic test that looks at an individual’s genes to determine the underlying cause of their condition. Currently, the cost of this test can be anywhere from $7,000 – $20,000 and it is not always covered by insurance. Through our non-profit work, we have found a genetic testing company who works directly with families and non-profits to provide Whole Exome Sequencing at a greatly reduced rate. Our goal this year is to raise enough funds to help at least 10 families receive Exome Sequencing for a chance at diagnosis. This means we need to raise at least $10,000 in all of 2016 to reach our goal.



//What is Rare Disease Day? 

First, what is a Rare Disease? 

A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.

A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.

One rare disease may affect only a handful of patients in the EU (European Union), and another touch as many as 245,000. In the EU, as many as 30 million people alone may be affected by one of over 6000 rare diseases existing.

80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
50% of rare diseases touch children.
Rare Disease Day

Rare Disease Day takes place on the last day of February each year.

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

There are over 7,000 known rare diseases. Individuals affected by a rare disease may be relatively small, but the number of rare disease patients with any diagnosis is quite large. In fact, 1 in 10 Americans is living with a rare diagnosis, so it is quite likely someone you know and care about is part of the Rare population. For most patients, the lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis. (The average length of time to diagnosis is up to 7.6 years!) Also the need for appropriate quality health care engenders inequlities and difficulties in access to treatment and care. This often results in heavy social and financial burdens on patients.