Introducing Rafael: A partnership Story

Gina and Rafael

Sometimes awesome things can come from the worst circumstances. If you have any questions about how that’s possible, we’d like you to meet Rafael. He’s a handsome, speedo-wearing inflatable life-sized novelty friend which a newly-diagnosed Chronic Inflammatory Optic Neuritis (CRION) patient and artist, Gina Hessburg, found hiding in a drawer. She decided to breathe life into Rafael, to initially help herself cope with isolation during Covid19.   Rafael became even more valuable as her seclusion was imperative due to her compromised immune system because of medication used to treat her attack.  As a creative outlet, Gina started posting photos of herself with Rafael online using Instagram to share their daily ups and downs.

Little did Gina expect not only the outpouring of likes and comments for her Raphael posts, but the private messages asking about his day. People seemed to love her adorable plastic companion and her lighthearted manner of explaining her disease, COVID information, and just having fun with her newfound companion.

Before she knew it, Rafael had an online community  following and engaging in her and Rafael’s adventures, and her hashtags, #BlowingUpRaphael, #GinaAndRaphael, #GinaAndTheBlowUpDoll were trending, thrusting the unsuspecting couple into the limelight.

A few friends urged she create a coffee tablebook using her photos and stories. Minneapolis based advertising agency Little & Company wanted to design the book for her  and Gina decided that she and Rafael would contribute a portion of the sales of her book to research and awareness for  Optic Neuritis.  To understand better how many people were struggling with multiple Optic Neuritis attacks with an undiagnosed cause, she was also joining online groups on social media, including Facebook. Gina shared her fun adventures navigating through the pandemic and how she was hoping to use Rafael’s appeal to help fund research, and hey, The MOG Project was talking about precisely the sort of research she and Rafael were hoping to find.

After an exciting Zoom meeting with The MOG Project Co-Founder and Executive Director, Julia Lefelar, and MOG Project Champion, Lisa Kovanda, Gina and Rafael decided they would like to be partners in our quest for a cure. The MOG Project introduced her to several leading researchers, all of whom she met virtually, and was able to decide how she would best like to see her research donations used.

The MOG Project Meets Gina on Zoom

So, what’s next? Gina’s Book is nearing release. We are excited to learn more about their adventures as soon as it’s available. Through our partnership, we hope to gain awareness of not only MOG antibody disease and CRION, but also foster friendships, share the joy she and Rafael celebrate online with a broader audience, and fund research looking for a cure.

So, welcome to The MOG Project Gina and Rafael. We’re excited to see what new adventures you share!

To read more about Gina, please see our page dedicated to her project here.

Kristina Lefelar | Media Relations | info@mogproject.org

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