Rare Disease Day Cup of Hope Chili Cook-off!

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! (Download the official rules:  Chili Cookoff Rules) 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. [Note: Judges may NOT be related to cooks in any way.]

Our Goal This Year

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 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.

As mentioned, due to the broad diversity of disorders and relatively common symptoms which can hide underlying rare diseases, initial misdiagnosis is common. In addition symptoms differ not only from disease to disease, but also from patient to patient suffering from the same disease.

How can things change?

Although rare disease patients and their families face many challenges, enormous progress is being made every day.

The ongoing implementation of a better comprehensive approach to rare diseases has led to the development of appropriate public health policies. Important gains continue to be made with the increase of international cooperation in the field of clinical and scientific research as well as the sharing of scientific knowledge about all rare diseases, not only the most “recurrent” ones. Both of these advances have led to the development of new diagnostic and therapeutic procedures.

However, the road ahead is long with much progress to be made.

Cook-off Registration

Please read the cook-off rules below before registering for the event. PDF Version: Chili Cookoff Rules

Registration Deadline is Friday, February 5, 2016!

GENERAL RULES

1. Teams of up to 4 members are permissible for entry with only ONE Head Cook designee. Entry fee is $20 per team.
2. Cooks will prepare two batches of chili. One batch will be for judging and one will be for public consumption. See below for cooking rules.
3. Chili will be judged based on Aroma, Consistency, Red Color, Taste, and Aftertaste.
4. Prizes will be given to the Top 5 chilis along with the winner of the popular vote, to be voted on by the public. Each team will also receive a goodie bag for participation in the event.
5. Each team will be designated a 10’x10’ area for cooking. Individuals are responsible for bringing all necessary materials (tables, chairs, tents, grills, portable burners, propane, chili ingredients, etc) Central Texas Speedway does have power available, but you will need your own extension cords/power strips.
6. Individuals should arrive at 11 am to sign in and begin set up.
7. There will be a head cook’s meeting at 11:30 to go over final timeline and review the rules, etc.
8. Judging cup of chili will be turned in to the judging table at 3:00 pm
9. The general public will be allowed to purchase cups for tasting beginning at 3:00 pm until the chili runs out.
10. Winners will be announced by 4:30 pm.
11. Individuals are responsible for cleanup and making sure the grounds are left in good shape.
12. The event concludes at 6:00 pm.

Although this cook-off is not an official CASI Sanctioned event, we will be following some of the CASI Guidelines as follows:

CHILI COOKING RULES

1. CHILI COOKED ON SITE – All chili must be cooked from scratch on site the day of the cookoff. All chili must be prepared in the open (no cooking in motorhomes, etc.).
2. CHILI COOKED FROM SCRATCH – “Scratch” is defined as starting with raw meat. No marinating is allowed. Commercial chili powder is permissible, but complete commercial chili mixes (“just add meat” mixes that contain premeasured spices) are NOT permitted.
   2. NO FILLERS IN CHILI – Beans, macaroni, rice, hominy, or other similar ingredients are not permitted.
   3. SANITATION – Cooks are to prepare and cook chili in as sanitary a manner as possible.
      1. INSPECTION OF COOKING CONDITIONS – Cooking conditions are subject to inspection by the head judge or his/her designee and cook-off organizers. (Failure to comply is subject to disqualification.)
      2. COOKS MAY HAVE TO TASTE THEIR CHILI – At the discretion of the head judge or Referee, chili cooks may be required to remove the lids from their chili cups and taste their chili before turning in for judging. (If a contestant refuses, his or her chili will be disqualified.)
   4. ONE CHILI PER COOK – Each head cook is responsible for preparing one pot of chili that he or she intends to be judged and turning in one judging cup from that pot. No more than one judging sample can be taken from any one pot.
   5. FILLING CUPS–Cups must be filled to 3⁄4 inch from the top of the cup or to the level designated at the cooks’ meeting.
   6. CHILI TURN-IN – Chili will be turned in at the place and time designated at the cooks’ meeting or as otherwise designated by the head judge.
   7. PYROTECHNICS – No chili contestant may discharge firearms or use any pyrotechnics or explosives at a chili cookoff. Contestants discharging firearms and/or using explosives or other pyrotechnics will be disqualified from the chili cookoff.
   8. PENALTIES – Failure to comply with rules will result in disqualification of an individual cook for the cookoff. Decisions of the official(s) are final. In case of disqualification, the official monitoring the cookoff will immediately notify the head cook and give a reason for disqualification. In the event disqualification of a cup of chili occurs after judging has started, it is not necessary that the cook be located or given an explanation for the disqualification.

Ready to Register? Click Here!

Thanks for joining us for the Inaugural Cup of Hope Chili Cook-off. Good luck!