How “Hot” Are You for Autoinflammatory Disease Awareness & Research?

Looking for a fun and easy  way to help raise awareness and funds to support research for autoinflammatory diseases?  Well, the “How Hot Are You?” challenge is just what you are looking for!  Our patient community has come together to brainstorm, name and create this challenge to help support autoinflammatory disease research and increase awareness for these diseases with our org, the Autoinflammatory Alliance.  We are so thankful that our empowered and energized community wants to do more to help the cause, and hope that you will also join in the effort.

Look below the video to download your own signs to use for the challenge, make a donation, and learn more about the effort. Thanks!

Please watch this short video that explains the challenge, why it matters and see some kids taking the spicy sauce/food challenge


The Autoinflammatory Alliance is a 501(c)(3) non-profit organization dedicated to helping those with autoinflammatory diseases. Your donation with this challenge will support our research fund and awareness efforts. 90% of online donations go directly to the research fund and awareness effort.

We hope that you get involved, share this blog post and video, and get your friends and family to take the challenge!  Donations are also welcome anytime, at any amount–every bit counts.

Donate now to help with awareness, education, and research for these rare diseases.





Why Spicy Foods and Temperatures?

The idea of the challenge was to do something that reflects the recurring, periodic fevers that can be quite high in many autoinflammatory diseases, along with a number of painful symptoms. Plus, as you can see from the video, it is rather amusing to watch people do the challenge!

Having people take their temperature before they eat spicy sauce or foods draws attention to the periodic fever part of these conditions, and the effect of eating or drinking something spicy brings more sympathy for the systemic symptoms that occur during attacks (flares). We also did not want to do anything that was cold, because a few of these diseases (CAPS, NLRP12, and PLAID in particular) have attacks of symptoms triggered by cold or cooling temperatures, icy conditions or even a sudden change in temperature. So, we did not want to cause any disease flares in patients!

If you liked the information in the video and want your own set of printed signs to use in your challenge, feel free to use ours, or make your own! Note this is a voluntary challenge, and you are free to choose what spicy sauce or food that you want to use, which can vary from hot sauce to  salsa, or even cinnamon or ginger candy!  Make it fun, and work for you.  Please do not have young children use anything too spicy for this challenge.  You can adapt it to have them try a spicy or flavorful chip, candy, or snack, or just a bit of salsa on the edge of a chip. Or just donate to the cause, based on the value of your temperature and avoid having to use any spicy sauce of foods. Any donation is welcome.

Disclaimer: This is a voluntary challenge. Anyone that is invited to take the challenge has a choice to accept it, or not with no repercussions.  Participants in the challenge assume all risk and responsibility for any and all consequences that may arise when doing this challenge.  Children that want to do the challenge are encouraged not to use any sauce or foods that are too spicy, and must choose, by their own free will to participate in the challenge. Thank you.

Click here to download a PDF with these printable signs to use for your own “How Hot Are You?” Challenge to help autoinflammatory diseases.

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Our Inspiration and Hope-We Need More Awareness and Support for All Rare Diseases!

Everyone in our patient forums have been greatly inspired, and motivated to do a challenge for autoinflammatory diseases after watching the attention that the “Ice Bucket Challenge” has brought for ALS, which is also a rare disease.  Some even started to do the ice bucket challenge but with a twist, to donate to ALS and to the Autoinflammatory Alliance.  The ALS challenge becoming a global internet sensation has touched our community too, because they feel that maybe now more people are becoming more aware and interested in rare diseases. We are not trying to compete with the ALS challenge, but we started this fundraiser because our patient community really wants to have something to do to get more attention and research for autoinflammatory diseases, and they helped to plan this challenge.

Now is the time for all rare diseases to get more attention for care, treatment and research. Through the ALS challenge, the general public that may not be affected personally by these diseases has opened up their hearts and pockets to show their support. We need that sort of momentum and support for rare diseases to grow!  Rare Disease Day will be on February 28, 2015 worldwide, and we invite you to get involved, and show your support for autoinflammatory, and all rare diseases.  I hope that we can make Rare Disease Day 2015 the biggest and most supported day ever for rare diseases worldwide.  Our organization has been involved in rare disease day since 2009, and we are looking forward to doing even more for the day this year. This “call to action” is just the start. See our blog posts on what we have done for Rare Disease Day in past years here.

Our hope is that we can get more famous people to get involved in rare disease efforts for years to come, and also that maybe they can get behind a platform to raise more funds and awareness for all of these diseases, such as the annual Stand Up to Cancer  telethon (which will be airing on Septmber 5th, 2014 in the US).  If you know a public figure who may be interested, please share this message with them, and ask them to get involved in not only supporting the  Autoinflammatory Alliance, but also rare diseases in general.

If we could get a rare disease national telethon and fundraiser, it would help ALL rare diseases greatly. The funding for research for rare diseases is harder to come by, and with budget cuts in the past few years, it has become an even greater challenge in the U.S and worldwide.  In France, they have had a telethon benefiting rare diseases for a number of years, and it supports 70% or more of the research for rare diseases in France.  We need this to be done here!  Even though our organization is in the U.S., we help patients worldwide and have been so thankful for the support for autoinflammatory diseases from EURORDIS and the other organizations involved in the Plateforme Maladies Rares that is behind the telethon in France.  Learn more about the Plateforme Maladies Rares and the telethon in France. (This link is in English.)

Contact us if you want to get involved on any level in our awareness challenge. If you want to help rare diseases on a larger scale, we would be happy to introduce you to our friends at NORD, EURORDIS and  the Global Genes Project. We all need your support to help rare diseases.

Working together is better. There are almost 7,000 rare diseases in the US, but there are less than 500 medications on the market for rare diseases.  Around 30% of rare diseases are fatal to children before they make it to their 5th birthday.  Some autoinflammatory diseases are also fatal to children and adults if untreated.  And some autoinflammatory diseases do not have effective treatments that have been developed yet, so research is greatly needed. These facts, and more can be found on the facts pages at NORD, Global Genes Project and Rare Disease Day websites.

Thank you for your support and interest!

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The Autoinflammatory Alliance is a 501(c)(3) non-profit organization dedicated to helping those with autoinflammatory diseases. Your donation with this challenge will support our research fund and awareness efforts. 90% of online donations go directly to the research fund and awareness effort.

We hope that you get involved, share this blog post and video, and get your friends and family to take the challenge! Donations are also welcome anytime, at any amount–every bit counts.

Donate now to help with awareness, education, and research for these rare diseases.





 

 

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