Middle Schoolers Make a Difference for FOP Families

Congrats to Team Sugar Rush for winning Destination Imagination regionals and state. Thank you for raising awareness of FOP!

There are many incredible fundraisers from within the FOP community, but there are also amazing people who support individuals with FOP and the IFOPA after simply encountering information about the disease.

Team Sugar Rush
Michelle and Hope meet Team Sugar Rush at the DI Global Finals

A group of middle schoolers in California recently found out about FOP and used it for their Team Challenge with Destination Imagination (DI), a project-based educational experience program. DI is the world’s largest celebration of creativity, challenging students to work together in teams to create a solution to one of six competitive challenges: technical, scientific, fine arts, improvisational, engineering and service learning. Teams that advance past affiliate tournaments (state and country) are invited to showcase their solutions at the Global Finals.

Known as Sugar Rush, this DI team of middle schoolers knew they couldn’t just learn about FOP, but needed to take action to help. As a result, they've raised $1,300 so far!

Team Sugar Rush won their regional and state DI tournaments and advanced to the Global Finals. In an amazing twist of fate, the 2019 Global Finals were held May 22-25 in Kansas City, Missouri, USA, where two of the IFOPA’s staff – Michelle Davis and Hope Newport – live. Michelle Davis, executive director of IFOPA, shared her experience meeting Team Sugar Rush and watching them compete:

What an amazing event on Saturday with Team Sugar Rush. They won Destination Imagination regionals and state in order to get to the Global Finals. These seven middle schoolers have been working since last September to identify a “medical mystery” that they would learn about and create a skit to explain what it is. They were given a budget of only $150 and while their parents can advise, they can’t help. Their skit was set in Ancient Greece with a man who was becoming very stiff and had limited mobility. He thought the stiffness and lack of mobility were because he had looked at Medusa. However, when it was noticed that he had swellings on his back they diagnosed him with FOP. These students spent more than 500 hours learning about FOP, building a set, and writing their own script; and they went the extra mile. While not required, after learning about FOP they wanted to do something more and organized several fundraising activities and raised more than $1,300. Congrats to Jyiothipriya Chittoor, Team Manager, and Team Sugar Rush. We are so grateful for you!

A team from Texas Also Presented on FOP
A DI Team from Texas also presented on FOP

After Team Sugar Rush’s presentation, Hope and I met a team from Houston, Texas who also did their Team Challenge on FOP. It’s great to see so many students learning about FOP and helping spread awareness.

Read the Q&A below to see the inspiration behind the awareness outreach and fundraising now being done by Sugar Rush parent and manager Jyothipriya Chittoor and team members Shishir Subramanya, Bhavana Maram, Krish Bala, Sarayu Cherukula, Siddharth Madireddy, Sarasija Tadepalli, and Adam Mohib.

How did you first hear about FOP?

We are a team of seven middle school students and we participate in the Destination Imagination program

This year, we had to research a medical condition and make a presentation about it. We were looking at several rare diseases and learned of a disease called FOP. As we learned more about it, it seemed interesting to us, so we chose this for our project.

What moved you to learn more about FOP and support the FOP community?

We looked at this disease and thought that it was something which we had never heard of and we could learn a lot about this disease. As we were researching FOP, we figured that it wouldn’t be enough to just learn about it. We thought that it would be even more meaningful if we helped the FOP community by doing something that could change someone’s life.

leg model
ACVR1 gene
The students built models to tell the FOP story

What surprised you as you learned more about FOP?

As we learned more about FOP, we were surprised to learn of a disease that is so painful and that restricts the mobility due to heterotopic ossification. We couldn’t imagine anyone living with extra bones in their bodies, so it motivated us to help those affected by this disease, and not just learn about it.

How did you become familiar with the IFOPA?

As we were researching the disease, we found ifopa.org. At first, we used this site to find information and facts about the disease. Later, we came back to this site and we found out that we could raise awareness about FOP and host a fundraiser to support the cause.

What specific projects or activities are you working on or did you work on?

We did several things including an online campaign, a bake sale, and we even went door to door spreading awareness about FOP. We distributed fliers and brochures in our community and to friends and family to create awareness. Many people didn’t know about this disease, so we told them about our research and showed them a model of a leg that was affected by FOP which we had made for our DI presentation. We also answered their questions. It was a lot of fun to go door to door and we were happy that many people decided to donate.

Team Sugar Rush fundraiser
Team Sugar Rush fundraiser for FOP

What do you hope results from your efforts to raise awareness and funding?

The awareness we have raised in our community will definitely inform more people about the disease. We hope that a cure will be found for FOP and those who are suffering from the disease will benefit from the funds we have raised.

Do you see future involvement for yourself with the IFOPA or the FOP community down the road?

Yes, we plan to help in different ways in the future, and this does not have to be a one-time activity. We want to continue what we have started and we hope that we can make a difference in the FOP community.

Is there anything else you think would be valuable to share with others about your experience learning about FOP and the IFOPA and your activities?

FOP is a very painful disease that has no cure. We want people to learn more about the disease and that anyone can make a difference in the FOP community. You can start your journey here with ifopa.org as they are a great resource to learn more about FOP and will help you every step of the way. Our team of students was able to raise over $1,300 and we are determined to make a difference in the FOP community. We hope that more people can get involved so that there will be a cure for FOP in the future.

The IFOPA is grateful to the Sugar Rush team for all they are doing for the FOP community. If you or someone you know would like information and assistance with fundraising for FOP, please contact Fundraising and Special Projects Manager Cathryn Roys or call (843) 709-3244.

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