$31k in 31 Days - Thanks & Recognition - Joubert Syndrome & Related Disorders Foundation
Countdown to Rare Disease Day - February 29!
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By Jenni Swenson

The month of October is now in our rearview mirrors and what an incredible month to reflect on as we head into 2018! For the first time, the JSRDF promoted the month of October as Joubert Syndrome Awareness Month and with that, the first ever foundation sponsored fundraising campaign; $31k in 31 Days.

In July, as I pitched the campaign to those in attendance at the Phoenix Conference fundraising session, I was met with blank stares and looks of shock as I explained to the group that the campaign is built just as it says, to raise $31,000 in the 31 days of October. I quickly broke the numbers down to make the $31,000 fundraising goal seem less daunting. If 31 families raised $1000, we’re done. If 60 families raised $550, we’re done, and so on. In that moment, I was confident that we, as a community would meet the hefty goal but, I anticipated that it would be a huge effort to get there.

Fast forward to the first day of October, I was filled with excitement as we stepped into the first ever Joubert Syndrome Awareness Month. We asked the Joubert Syndrome community to open up and share their stories with their networks of people, share the challenges that you’ve had as a family affected by Joubert Syndrome, share the incredible successes, share the highs and lows and really just share our community with those around you. Individuals used many different opportunities to share their stories, some posted their journey with Joubert Syndrome to Facebook educating their network through social media, some held garage sales, and backyard parties. No matter what the means of spreading the word, the results were incredible. I could never have imagined the outpouring of support that we saw in just the first week alone! In first 5 days, we flew right by our first huge milestone raising over $10,000!

I’d like to take a minute to recognize our top three fundraising teams from this event;

1. Fatima Mizra told her sweet girl Simra’s story over the course of the month via Facebook and raised over $4500! The Mizra family lives in Australia so the bulk of their donors were from Australia and the Middle East. Way to go Mizra family!

The Mizra Family

2. Chuck and Laura Soder brought in over $4200 just by doing a quick call out for donations to their Facebook friends and family. The Soder Family lives in Ohio. JSRDF Board Member, Chuck, and Conference co-chair, Laura have five year old twins, Kate who has JS and Charlie who is unaffected. Thank you, Soder family for your continued dedication and support of the JSRDF!

The Soder Family

3. Cassie Meiers started the month out really strong by building an incredible team for Race for RARE! Cassie had a team of over 40 people that registered and came out to run and support their boy, Jax! The Meiers family raised over $4100 in the month of October bringing awareness to their community in Montana! Jax isn’t even two years old yet and his mama is doing amazing things for the JSRDF! I cannot wait to see what the next years bring for this sweet family! Thank you, Meiers family for all that you’ve done in such a short time!

The Meiers Family

There are so many others to be recognized and I want each and every one of the families that participated in $31k in 31 days to be proud of your efforts! It’s because of every single one of you that we were able to crush our goal in our first year! With all of your efforts, we were able to raise over $40,000!