Ely and his older brother, Titus, have a rare neurodegenerative disease called Batten, or CLN2.  Batten disease is progressive and fatal and as of now there is no cure. Until recently, there was no available treatment either. Now,  a groundbreaking enzyme replacement treatment has shown promise and will hopefully soon be available to Ely. Heartbreakingly, Titus is too progressed to benefit from this treatment. We want to help this family with the specific financial needs that surround accessing treatment which will include the travel and living costs that will quickly add up as they need to commute across the country twice a month to get this treatment for Ely. This gofundme site is tied to the specific fundraising event called Ride For Ely, as their friend Rockey bycicles from Southern California to Montana! You can follow his progress right here as he raises funds and awareness!
 To follow this family's journey head over and like their page on fb by clicking here! ‌

 Click here to learn more about Batten disease and the research being done to find treatments and cures! ‌

Several churches and other organizations have inquired about showing the video publicly  - YES, please. A high quality, downloadable version of the video is available at Vimeo Ride For Ely .