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Project Zebra

@project_.zebra

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Project Zebra is an operation to raise awareness and funds for Rare Diseases

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This past weekend I volunteered to for an event to raise funds for Ella, a young girl with Stage 4 Lupus! The event was a lot of fun and I am so happy that I was able to help out with such a great cause! by @project_.zebra

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6 months ago

I also stopped today to pick up a shirt! I am supporting 8 year old, Ella who has stage 4 lupus! Fighting for a cure for her and I will help as much as I can! by @project_.zebra

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8 months ago

Spending National Rare Disease Day right! I stopped for a bite at Component Brewing as their proceeds today are going towards NORD! The made a special brew for zebra diseases and had raffles! by @project_.zebra

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8 months ago

Thank you so much to Milwaukee County Executive, David Crowley for your support of National Rare Disease Day! I am so grateful that you responded to my request and made a proclamation for National Rare Disease Day! by @project_.zebra

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8 months ago

At my school, there’s a club called Stamped with Love where we write cards to patients in children’s hospitals! Fun fact: all pediatric cancers are rare! I’m glad I participated and hopefully put a smile on the faces of the patients who are going through a very scary time by @project_.zebra

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8 months ago

Proud to be from a state where new born screening and rare disease awareness is cared for. I am very proud to be an advocate for rare disease awareness and will continue to speak about my experience with rare diseases as well as fundraising for NORD by @project_.zebra

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9 months ago

Wow! 2025 has been a great year and I am so happy that I was able to accomplish so much! Project Zebra is something I have been working on for a few years now and getting to see all I have accomplished in just a year with it is so amazing! Thank you to my community for allowing me to advocate for rare disease awareness🦓 by @project_.zebra

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10 months ago

I want to send a huge thank you to my dear friend, Ella for inviting me to Rally around today which is a walk and event made possible through Wisconsin Children’s Hospital. They currently are treating my friend for multiple rare diseases and she reached out to me to be involved in the advocacy today! Thank you Children’s Hospital of Wisconsin for what you do and for putting on this amazing event! by @project_.zebra

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a year ago

My community service initiative, Project Zebra started as a way to honor my dad who had passed from a rare type of cancer. It helps me person to find some support and people who understand rare diseases and how they affect people.

Today, I advocate not just for my father and his death, but now myself. I recently found out that I have a rare disease called Ehler’s Danlos, which means I am hyper mobile, have a sensitive stomach and sensitive skin. Although there is no cure, I am strong and capable of living with this. This isn’t a deadly disease but not all rare disease patients are that lucky. My dad wasn’t as his rare disease took his life.

I will continue advocating for rare disease awareness for my dad, for myself, and for all those who are affected! by @project_.zebra

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a year ago

Kicking off the interviews, today’s special guest shares about their story with rare diseases and how it has shaped their life! I’m very excited to continue this series and hear more stories. by @project_.zebra

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a year ago

I want to extend a huge thank you to Gavin Proffitt from the health department of Senator Johnson’s office for hearing my story. Thanks to Rare Across America, I was able to attend this meeting and share my story as well as advocate for policymaking of rare diseases. Thank you Gavin for your belief in our proposal and your promise to speak to the Senator about our message! by @project_.zebra

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a year ago

Everyone’s story deserves to be heard!

I am starting something new where I will interview those who have been affected by a rare disease whether it is suffering from one themselves or having a loved one that has had one.

If you are interested in sharing a story, being a part of my short series, or learning more info on it, please feel free to message me!

Share your story! Let’s all be aware for rare!

Photo creds: @artemiophoto by @project_.zebra

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a year ago