The Race for Rare Virtual 5K
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RACE FOR RARE logoThe 1st Annual Race for Rare Virtual 5k is coming this fall! Co-organizers Meghann Grace and Jenni Swenson have been hard at work getting the logistics for this exciting fundraising event in order.

I recently spoke with Meghann who filled me in on the details. Meghann is a proud mother of three, and an advocate for her daughter Hensley who is diagnosed with Joubert Syndrome. She’s a former recreational runner who has run lots of 5ks, mud runs and a half marathon. She will be dusting off her running shoes and training to participate in the Race for Rare from her hometown of Peaster, Texas.

Meghann Grace and daughter Hensley
Meghann & daughter Hensley

Meghann, tell us about the Race for Rare!

Our 1st annual Virtual Race for Rare will be held October 7, 2017!

This is the first time ever that Race for Rare will be able to reach participants worldwide bringing awareness to Joubert Syndrome and the rare disease community all over the world! Joubert Syndrome is one of 7,000 known rare diseases affecting over 30 million people in the US alone. Rare disease, in fact is not so rare! Race for Rare is supported by the Joubert Syndrome and Related Disorders Foundation, all profits from Race for Rare will benefit the JSRDF.

What is a virtual 5k?

A virtual 5k is a 3.2 mile run/walk that you can do from anywhere in the world for one cause! You register online then we will mail you your registration packet before race day so you can wear your shirt while you do your 5k. You can do it alone or with a group of friends/family.

Why did you decide to put on the event?

We want this event to help our families to spread awareness for Joubert Syndrome in their communities while bringing them together to do something fun!

What comes with the registration fee?

With the registration fee you will get a t shirt & race packet! If you post a picture to our Facebook page of you doing the 5k then we will mail you a finisher metal!

How can people participate?

Gather your neighbors, communities, friends & family to do the 5k together. Set a time to walk/run & have a fun time. Participants with the largest team will receive a Joubert Syndrome gift bag! All team members must be registered to count so be sure to give out our registration link!

You can also make your own private Facebook event page to keep your group up to date. Post our registration link in your event page so everyone in your group can register.

Get your kids involved, if they are not able to walk long distances use a jogging stroller or special needs bike to push them. Craig’s list & Facebook buy/sale/trade pages usually have used jogging strollers for great prices. Be creative & have fun! Follow our Race for Rare Facebook page for tips & information.

Don’t forget to take lots of pictures to post to the Race for Rare Facebook page!

How can people register?

You can register now for the early bird price of $40! The link is:

Also please follow & share our Facebook page!

Thanks for chatting, Meghann!

Ayah Young, Board Member, JSRDF