Rolling with the Sneds

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Rolling with the Sneds We are siblings with a rare genetic disorder (RTD Type 2) that rendered us deaf, legally blind & with very limited mobility.

The Snedeker family hopes to inspire people to never give up. Follow our journey on YouTube as we turn TRIALS into TRIUMPH!

17/02/2021

Super Bowl LV Champions! That was a great moment!

26/01/2021

The Bucs won the NFC Championship game! It is the first time ever in NFL history that a home team will play the Super Bowl at their stadium. That was an intense game but glad we made it. Go Bucs!

01/01/2021

Happy New Year! 🎉🎊 We did fireworks in our neighborhood.

We hope you all have a great Christmas!
26/12/2020

We hope you all have a great Christmas!

Happy Hanukkah! Our friends brought over a delicious dinner including latkes.
16/12/2020

Happy Hanukkah! Our friends brought over a delicious dinner including latkes.

29/11/2020

We're live with your questions! Thank you for joining us and for all the donations. Join us and celebrate!

16/11/2020

Today is International Riboflavin Transporter Deficiency (RTD) Awareness Day. RTD is a life-shortening, neurodegenerative disease that takes away a person’s ability to hear, see, move, walk, eat, and breathe. Every year on November 15th people join together around the world to celebrate and highlight the challenges faced by people with RTD, their families, and caregivers. This day is also about building important awareness about RTD and the desperate need for RTD research, improved treatment, and a cure. This is a day for everyone, no matter where you are or the role you play.

For more information on RTD please visit the Cure RTD website at CureRTD.org

Check out these awesome Cure RTD t-shirts! From Paige: "I had so much fun going the art for this project. The Cure RTD t...
05/11/2020

Check out these awesome Cure RTD t-shirts!
From Paige: "I had so much fun going the art for this project. The Cure RTD team did an amazing job with the shirt design."

Please consider purchasing a shirt to help us raise awareness! All proceeds will go towards Cure RTD research to find a cure:
https://www.customink.com/fundraising/curertd?fbclid=IwAR1HtqYCQ2y-R4jo7tBsP3m0YHLEIefsvFlK7EsSOa2WHN83U5knK73isi0
You can also donate to our Facebook fundraiser to help us reach our goal: https://www.facebook.com/donate/786086382232661/






Paige was featured on the Cure RTD page for her artistic contributions! You can leave your own questions for he...
02/11/2020

Paige was featured on the Cure RTD page for her artistic contributions! You can leave your own questions for her and the family to answer on our Live Q&A (November 29th) any of our posts' comments. We plan to answer all of your questions and we are looking forward to spending time with all of you! Don't forget to donate to our fundraiser (link below) and be on the lookout for a new video this Friday!

https://www.facebook.com/donate/786086382232661/







As we kick-off RTD Awareness month, we are getting to know the creator of this year’s CureRTD Awareness artwork, artist and illustrator, Paige Snedeker.

1. What inspired you to create this artwork, other than my asking you? What do the pieces represent? What inspires you in general?

As a RTD Warrior, and a sister to two brothers with RTD, I am greatly inspired to raise awareness and find a cure. Doing this artwork allows me to express my hope.

2. What is your artistic background? Do you have any formal artistic training? What techniques and mediums do you use in your artwork?

I began to do art after I came home from the hospital when I was four years old. I lost the ability to do almost everything. My hands were weak, and I couldn’t use them. My aunt brought some colored markers to uplift my discouraged spirit. She instilled the love of art in me and I learned to draw with my toes. As I grew older, I regained the strength and started to draw with my hands. The love of art never left me. I continued to do art and learned when I reached the age of thirteen, my hands began to weaken again. I could no longer do art with my toes because of my low vision. Instead, I trained myself to paint with my mouth. The idea was inspired by Joni Eareckson Tada.

In my high school years, I was given an art teacher who taught me different techniques for art. I learned how to use different materials. I used the skills my teacher taught me to illustrate children’s books.

Often when I do art, I use a canvas and acrylic paint. I have also done art with broken glass, watercolors, paper towels, balloon, sponges, Q-tip, paintbrushes, and my fingers with the assistant of others. I often use a pour paint technique nowadays where I hold a funnel, syringe, or colander in my mouth and create my pattern while someone pours paint into it.

3. How do you know when a piece of artwork is finished? Do you begin your creations with an idea of a completed piece, or do you wait and see how it all comes together as you go through the process?

Often, I will brainstorm what I would like the piece to look like before I begin. I also like to play around and experiment as I go. I will analyze my work to see if I like it to decide if I need to add something, make changes, or if I am satisfied with the finished product. It is different for every artwork I do. I am very particular.

4. What do you like most about being an artist?

I love having the ability to pour forth the image that plays in my mind and bring it to life. It is very stress relieving for me when I am able to pour out my feelings.

5. My son with RTD is also an artist, so I know that there are certain aspects of creating a piece that are challenging to him because of his physical limitations. What, if anything, do you find challenging when creating a work of art?

Because I can’t use my hands, the hardest part for me is finding an artistic person to help me with my art. I often have to explain to whoever is helping me what I want the art to look like, and it is easier if they have an artistic background and mind. That helps them understand what I am talking about. Certain light colors are harder for me to see, so I require people to be very specific when I work with those colors. I also struggle if I am working with an image that is small and harder for me to see. I rely on others’ hands and eyes.

6. Tell us a little bit about the Paige Project. When did you start creating books and do you have anything new in the works? Where can people go to learn more about you and your art?

In high school I began writing and illustrating my first children’s book, “Sofia and Her Morningstar.” I later wrote and illustrated a second book, “Camo’s Journey” and illustrated a book for a friend of mine called, “I Love You the Mostest.”I wanted to use my skills to share my story and inspire others to overcome adversity in their life. In January 2019, I officially founded my nonprofit, The Paige Project. Currently I am working on writing my memoir. I have started a third children’s book for my series but have temporarily put that aside until my memoir is completed.

You can find more information about The Paige Project on our website, www.thepaigeproject.org.
You can also find us on social media at:
Facebook: https://www.facebook.com/ThePaigeProject/
Instagram: https://www.instagram.com/paigeproject/
Twitter: @ paige_project

7. Lastly, what do you feel the role of an artist is in our society? Do you think that role has changed over the past year with the pandemic?

As an artist, I hope to show others that anything is possible and that no matter our limitations, we can overcome and do something amazing in a unique way. The pandemic has made me want to try new things and be more creative. I think for many people it has caused them to want to do art and pour out their feelings. It can be hard for people to express themselves through words, especially during the pandemic, but I think art gives us a way to express our creativity through colors and images.

It’s RTD Awareness Month! We are starting a fundraiser toraise money for RTD research and to raise awareness (link below...
01/11/2020

It’s RTD Awareness Month! We are starting a fundraiser to
raise money for RTD research and to raise awareness (link below). Keep an eye out for a new video from us every Friday for the entire month about our family's battle with RTD! We're also going to live stream a Q&A on the 29th at 6pm, so feel free to leave your questions in the comments as well. Join us!

https://www.facebook.com/donate/786086382232661/







14/10/2020

It's no secret that we're huge fans!

Did you know you can support The Paige Project on Amazon? As Prime Day approaches, why don't you give it a try?
12/10/2020

Did you know you can support The Paige Project on Amazon? As Prime Day approaches, why don't you give it a try?

Tomorrow begins !

Did you know while shopping for all the great deals you can support The Paige Project? All you have to do is shop using and select The Paige Project as your organization to support. Amazon will donate a portion of your total to help us continue to inspire others, with no extra cost to you!

As always, we thank all of our followers and supporters for all you do. We couldn't do this without you!

02/10/2020
We had fun watching the hockey playoffs! The   did awesome! We are the   Champions! ⚡️⚡️⚡️
02/10/2020

We had fun watching the hockey playoffs! The did awesome! We are the Champions! ⚡️⚡️⚡️

Check out our new trailer for our YouTube channel! Don't forget to subscribe and hit the notification bell to see more f...
22/09/2020

Check out our new trailer for our YouTube channel! Don't forget to subscribe and hit the notification bell to see more from us in the future. We hope you will join alongside us in our journey!

Welcome to our channel! Rolling with the Sneds is where you can come and get to know Tyson and Paige Snedeker and their life with the rare disease of Ribofla...

Enjoy the video. Please share and subscribe to help us build our channel!  https://youtu.be/vtcAILVI8uQ
08/07/2020

Enjoy the video. Please share and subscribe to help us build our channel! https://youtu.be/vtcAILVI8uQ

Steve Snedeker shares his thoughts about raising 3 children with a rare disease and Paige and I show our physical progress. We never stop trying to improve o...

Hello, everyone. Thank you for following us! We are excited to announce  our video Courageous Fighters has over 1,000 vi...
25/06/2020

Hello, everyone. Thank you for following us! We are excited to announce our video Courageous Fighters has over 1,000 views. Please consider subscribing to our channel and sharing with your friends and family.

https://www.youtube.com/channel/UCWP__LqRv-Ir5eKyXK_Q6Kg

Come join the "Sneds". The Snedeker family of Florida as they continue to roll through life with RTD and the new treatments that are giving them hope! Subscr...

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