Cassie's Crusader

Happy Father's Day, babe! Thanks for being our provider, protector, grill master, best friend, fun maker , and fixer of all things, including broken hearts. We hope you feel our love and gratitude every day😘

When you're so good at eating your food from home, your grocery list looks like this😫 it's going to be a long, expensive day😬 anyone else use the whiteboard method for lists?

Cassie had so much fun at both events!. We are so grateful for Buckeye Residential Solutions, LLC and Portage County Board of Developmental Disabilities !

Do you use your Sunday to rest or prep? I prefer to use mine to prep but also do a more complex dinner. Today consisted of:
packing and labeling EVERYTHING for Cassie for day camp tomorrow
Deep cleaning and organizing the freezer under our fridge
Made banana bread
Meal plan and list making
Homemade pizzas!
I hope to incorporate more rest in the future but I love going into my week with some organization.

The silver lining to this life is I know there is nothing I can't learn, nothing I can't figure out. I might get it wrong the first 10 times, but I will not give up. This is not the life I would have chosen, but it's a beautiful life.

From the first day of kindergarten to the last. It might not look like it, but this was a huge year of growth. She continues to work hard. She learned to read and LOVES it🥰 enjoys playground equipment and making new friends. I can't wait to see how she grows next year.

Trying to "relax" while knowing she is probably overdoing it😬 wish me luck😜 We went and got a library card today, and I picked a pleasure book for the first time in years. Relaxing doesn't come natural to me. I have to work for it, which defeats the purpose but I am trying🤣

Sharing some facts🥰

These last 3 weeks have proven that is one of Cassie's hardest symptoms of to navigate and find balance with. She has missed 3 whole days of school and 3 half days in the 2 weeks leading up to spring break. A lamotrigine increase and nightly klonopin brought us to today her best morning since this all flared up on 3/4/24. Dozens of phone calls with neurologist, starting to pack twice thinking she was going to get admitted. It's crazy the medical professionals have way more faith in me being able to handle things than I do. Hopefully today was not a fluke and we can enjoy Easter weekend🤞🤞🤞

Thank you for helping us spread our reach! You can make donations at anytime! Tax deductible and don't forget to check with your employer for matching as well. Thank you, thank you

Thank you to all of those that participated in and shared our awareness day posts!

We were able to raise almost $500 for the foundation!

Our awareness day posts reached over 10,641 people.

We gained 43 new followers.

We appreciate all of the support!

Meet Kayden!

Meet Kaden!

Today's featured story is Kaden!
Click to read Kaden's story.

If you want to share your own story with us, you can click on "share your story" at the bottom of the page!
Visit our Awareness Day Page to see how to participate and get involved!

https://tubb3foundation.org/stories/kaden/

It has taken over 2 years to officially share her journey from the TUBB3 Foundation because Cassie presents so much different than other TUBB3 kiddos but as you have seen from the stories shared each person is unique in development and symptoms. We hope sharing helps at least 1 person finds their answer and feel less alone.

Meet Cassie!

Today's featured story is Cassie!
Click to read Cassie's story.

If you want to share your own story with us, you can click on "share your story" at the bottom of the page!
Visit our Awareness Day Page to see how to participate and get involved!

https://tubb3foundation.org/stories/cassie/

Another inspiring friend, meet Allison

Meet Allison!

Today's featured story is Allison!
Click to read Allison's story.

If you want to share your own story with us, you can click on "share your story" at the bottom of the page!
Visit our Awareness Day Page to see how to participate and get involved!

https://tubb3foundation.org/stories/allison/

Jonny is a music lover like Cassie🥰🥰🥰

Meet Jonny!

Today's featured story is Jonny!
Click to read Jonny's story.

If you want to share your own story with us, you can click on "share your story" at the bottom of the page!
Visit our Awareness Day Page to see how to participate and get involved!

https://tubb3foundation.org/stories/jonny/

Kinley was Cassie's first tubb3 bestie. They have had so much fun together the last 2 years at conference 🥰🥰🥰

Meet Kinley!

Today's featured story is Kinley!
Click to read Kinley's story.

If you want to share your own story with us, you can click on "share your story" at the bottom of the page!
Visit our Awareness Day Page to see how to participate and get involved!

https://tubb3foundation.org/stories/kinley/

The beauty of the sunflower can not compare to Athena🥰🥰🥰

Meet Athena!

Today's featured story is Athena!
Click to read Athena's story.

If you want to share your own story with us, you can click on "share your story" at the bottom of the page!
Visit our Awareness Day Page to see how to participate and get involved!

https://tubb3foundation.org/stories/athena/

Athena, another beautiful warrior🥰🥰🥰

Meet Athena!

Today's featured story is Athena!
Click to read Athena's story.

If you want to share your own story with us, you can click on "share your story" at the bottom of the page!
Visit our Awareness Day Page to see how to participate and get involved!

https://tubb3foundation.org/stories/athena/

I am seeing double cuteness🥰🥰🥰

Meet Ava and Cora!

Today's featured story is Ava and Cora!

Click to read Ava and Cora's story.

If you want to share your own story with us, you can click on "share your story" at the bottom of the page!
Visit our Awareness Day Page to see how to participate and get involved!

https://tubb3foundation.org/stories/ava-and-cora/

Oh man, these smiles and stories melt my ❤️

Meet Kevin!

Today's featured story is Kevin!

Click to read Kevin's story.

If you want to share your own story with us, you can click on "share your story" at the bottom of the page!
Visit our Awareness Day Page to see how to participate and get involved!

https://tubb3foundation.org/stories/kevin/

Meeting Ryker!

Meet Ryker!

Today's featured story is Ryker!

Click to read Ryker's story.

If you want to share your own story with us, you can click on "share your story" at the bottom of the page!
Visit our Awareness Day Page to see how to participate and get involved!

https://tubb3foundation.org/stories/ryker/

Do you follow the TUBB3 Foundation ? We are sharing stories of our TUBB3 family. Always inspiring to hear others stories🥰🥰🥰

Meet Stella!

Leading up to TUBB3 Awareness Day on March 16th we will be sharing family stories. Today's featured story is Stella!

Click to read Stella's story.

If you want to share your own story with us, you can click on "share your story" at the bottom of the page!

https://tubb3foundation.org/stories/stella/

Today is March 1st, which means we are gearing up to celebrate TUBB3 Awareness Day on March 16th. This date (3-16) was chosen because of Tubulin-beta III (3) which is located on the 16th chromosome (16).
TUBB3 Awareness Day is all about spreading more knowledge and information to create more awareness of TUBB3 related disorders both in the medical field and in our communities. TUBB3 is an Ultra Rare Disorder, there is currently very little information known, and we hope in the future to change that and create more knowledge and awareness for all individuals and families affected by TUBB3!

Join us in the movement of spreading awareness of TUBB3! You can do that in many ways. Checkout our Awareness Day page on our website to learn how to:

🧬Share your story
🧬Download the TUBB3 Awareness Day Social Media Profile Frame to use
🧬Send pictures to be included in this year's Awareness Day video
🧬Donate
🧬Purchase Awareness Day shirts
🧬On March 16th spread the word and tag us using !

https://tubb3foundation.org/tubb3-awareness-day/

Almost let pass us by 😬

Our Cassie girl turned 6 today. She is seriously the funniest, most clever, empathetic, loving, well-spoken, and super smart girl. She makes me want to be a better person every day.