Project Sebastian

Meeting time change!! We are now meeting at 7 PM on Thursday nights for our weekly RDSG meeting! Everything else stays the same from the zoom link to the actual place of in-person meetings. If you need any assistance please reach out to me directly! See you all there tonight at 7 PM.

Update on the Color me Batten at Color Me Mine in Valencia this weekend!! Color Me Mine 11-13th of June 24300 town center dr. #106 Valencia ca... Westfield Valencia Town center!! See more

International Batten Disease awareness day June 9th. We are so incredibly happy to be spreading awareness on this very special day. Sebastian and I went out for an early morning walk and he is doing a lot better this week. We were also pleasantly surprised with our own City Hall @cityofsantaclarita as they have recognized June as Batten Disease awareness month. They have lit the front of the building in the symbolic teal colors of this disease. I am overcome with gratitude from the support of this amazing city that I live in. Thank you all who have supported us along our journey. #battenday2021 #lightupforbatten #teal #curebatten #cln8 #raredisease #awareness #teamsebi #love #hope #cure

Here In California, we have a lot of restrictions and can't do's... But we are still living our lives to the best we can. Lockdown, lockout, social distancing, masks no touching...call it what you will. Halloween has always been a big deal to Sebastian so we are gonna have fun and Trick or Treat for sure!! #Ironman #captainamerica #blackwidow... #wonderwoman(dog) See more

For Oscar.. RIP brave batten warrior We will take it from here. Oscars Story.

We are super excited about our upcoming virtual holiday art fundraiser! The new flyer is out! Special thanks to Kami Gabriel for creating this event and making these beautiful digital cards!! You can find her work at http://www.kgabriel.com/

Don't forget that October 13 and 14th this week is Amazon prime day!! During these two days, Project Sebastian is asking you to add our foundation to Amazon smile. It's the same as Amazon but each purchase you make a portion goes to Project Sebastian! It's easy! ~Go to https://smile.amazon.com/ and add Project Sebastian as your charity of choice. ~Shop ~A donation from your purchases goes to help ... Sebastian, and children like him, have a chance at a full life! There is no extra cost to do this! And you can keep this on for the rest of the year for all of your shopping and holiday needs! Thank you!! #sharethelove #donatewithamazon #smileamazon See more

This is how #ironman spends his days off. #ironman #saturday #rest #dayoff #superhero #battenhero #cln8 #teamsebi #stud #curebatten #donatetodaytosavealifetomorrow

Another video from yesterday‘s training session! Special shout out to sebastian‘s personal trainer Andrew Basil for helping sebastian push harder than he has ever had to. The two of them are like peanut butter and jelly #training #walkingtorunning #pt #focus #nuebie #cantstopwontstopfoundation #itsgottabetheshoes #workhard #curebattendisease #cln8 #hope #into #action #incredible #kid

This kid has a heart of a lion! He has not been able to run like this in over five years. I can’t explain it other than his newest therapy @focusptscv I had tears in my eyes watching him run and laugh through the entire training session. It’s been a long time since I’ve seen sebastian smile like this! I am in utter amazement at the will of this kid to get better. So proud of you Sebastian!! #running #sprints #amazing #incredible #beastmode #pt #focus #therapy #proud #daddy #tearsofjoy #laughter #curebatten #disease #cln8

The progress @focusptscv for Sebastian has been incredible As we are just almost 7 weeks and he is standing just about 5’8 and pretty much in a straight line. The @nuebie machine has created an entire new world for sebastian. So great to see my son stand tall and with a smile! Thank you so much to the team at focus therapy centers! #pt #nuebie #neufit #electricstimulation #curebatten #cln8 #battendisease #projectsebastian #standup #straight #smiles #incredible #hope #action #cures

Here is your Sunday sassiness!! Watch out Monday!! #curebatten #cln8 #sophia

The heavens gained a real warrior today. God bless you oscar...we will never forget. We will take it from here.

Grandma Michelle Velona representing #projectsebastian face masks at Target today!! #savage

So there's this guy Carl Thomas Project who is pulling a plane to raise awareness and funds to help Ollie's Army Battling Against Battens !!! So incredible!! He has been up over 36 hours and he is still going!! If you want to support this amazing challenge click on the link below!! #beastmode #badass... #olliesarmy See more

Here's to another week of forward progress... Don't let fear stop you from your goals! "Everything you want is on the other side of fear." ~George Addair