Natalia’s Rare Community Rallies for One of Their Own

The power of community is a beautiful thing and can shape real change from the local level. In fact, much of our progress is driven at the local level by strong, united communities. One such community is based in Toms River, New Jersey, and has rallied around one of their own and our own JM warrior, Natalia Llauget. 

Natalia’s family partnered with a local favorite, Burger 25 to create a custom menu item for Rare Disease Month, in which a portion of the proceeds were donated to Cure JM. It has been said that fundraising is local and Natalia’s Rare Disease Shake lives up to this moniker. 

The entire community rallied around the family and was able to indulge in tasty treats for the cause. A win-win was in order for all!

We recently interviewed Natalia and her mom, Lindsay, to learn more about this community fundraiser and its impact. Join us in celebrating the Llauget and their community!

Cure JM DIY/Volunteer Interview: Natalia’s Shake Collab w/Burger25

Tell me about your event. What exactly is it and how can people support it?

This event took place during the month of February to raise awareness to JDM (during rare disease awareness month).  A local establishment, Burger 25, features four different flavored milkshakes every month.  During the month of February, they let Natalia pick a flavor milkshake and proceeds from this purchase went to CureJM.  People were able to support this cause by purchasing a milkshake at one of their two locations.  

Why did you choose selling milkshakes as a fundraiser?

We chose selling this milkshake because Burger 25 is a very popular establishment and who doesn’t love a milkshake.  As I said, they change their featured flavors every month and offer 4 special flavors, so we thought this was a fun and delicious way to raise awareness to Juvenile Dermatomyositis, while also making Natalia feel special for having a shake named after her.  

How did you decide what went into the shake to make it uniquely yours and a hot menu item?

Every month, there is always a flavor on the menu that has some form of peanut butter in it.  Natalia loves Reese’s Peanut Butter cups, so we tried to find a way to incorporate them into her shake.  A friend of ours actually came across the caramel peanut butter cups, and we decided that was the flavor we had to have, and it was truly delicious.  We were told several times throughout the month that it was one of their most popular shakes out of the four.  

If others are inspired to do a shake fundraiser event, what advice would you give them for success?

Pick a flavor that you know will be popular (peanut butter, chocolate, etc.) and find ways to promote the shake.  Burger 25 works with a special media company to shoot their promos and take photos and they continued to promote it on their social media pages.  We also made it a point to constantly promote it on our own pages, and Burger 25 would continuously re-share our posts.  It may have seemed a bit excessive at times, but we wanted to do our best to raise awareness of this rare disease.  We continued promoting it all month and asked anyone who went and got the shake to post about it as well!

What goals or outcomes do you hope come out of this fundraiser?

We wanted to mainly raise awareness of juvenile dermatomyositis.  Being that it is such a rare disease, we wanted more people to know what it is and know how important the research is to finding better medicines and, ultimately, a cure.  Before Natalia was diagnosed, I had never even heard of JDM.  Although I was initially relieved to finally have answers to what was causing all her pain, the more I learned about the disease and learned the severity of it, the scarier it got.  It was also terrible to live through the horrible side effects from some of the treatments, so partnering with an establishment that was willing to give back some of the proceeds meant the world to us because every little bit helps to fund the research.  As it says, the Hope is in the research. 

Your fundraiser ran during Rare Disease Month. What inspired the idea for this event or fundraiser?

What better time to raise awareness to JDM than during Rare Disease Month?

How has this event or fundraiser helped you feel connected to Cure JM’s mission of improving the lives of those affected by JM and/or seeking a cure?

We felt connected to Cure JM’s mission of improving the lives of those affected because we were spreading awareness of this rare disease.  If one person learned more about this disease and a way to help those affected by it, then we succeeded in our mission.  I know for a fact that people at times simply purchased this shake because they saw the proceeds benefited a cause, and that is a great feeling to know there are people out there who will support a rare cause.

 Why is community support/participation so important to the success of this event and/or Cure JM’s mission?

Community participation and support are important because it’s the whole driving force behind the success of a fundraiser like this.  If Burger 25 didn’t support this and participate in this fundraiser as well as our family and friends who supported it and promoted it, it never would have been as successful as it was.  

What lasting impact do you hope to leave for other JM kids like you?

To have the chance to make a difference for the other boys and girls affected by this disease and for them to have a chance to feel as special as Natalia did all month long.  

Shevlin & Smiddy Families Unite to Build Community

One such alliance in the Seattle area is that of the Shevlin and Smiddy families. These two families have come together to host community events that make Cure JM’s crucial work possible. Their approach has been to keep it simple with a “yard sale” yet, the event has become a staple in their community and a way for JM and families and friends to stay connected year after year.

DIY Fundraising

Fundraising doesn’t have to be a daunting task…We’d like to invite our families to join us in putting the “Fun” in fundraising.

Join Cure JM

Membership is free and we’ll connect you with a network of support, encouragement, and resources.

Cure JM supports families, patients, and the juvenile myositis research community.

Interested in DIY fundraising but need help?

We’re here to help!

To have your fundraiser matched, add “DIY Match” in the memo of your online gift or check.

Interested in DIY fundraising but need help?

We’re here to help!

To have your fundraiser matched, add “DIY Match” in the memo of your online gift or check.