Connor Dobbyn is 12-years-old and has a degenerative and fatal disease called Sanfilippo syndrome. But there is hope in a clinical trial that lacks funding.
Connor’s parents, Marisa DiChiacchio and Mike Dobbyn, have set out to fund the clinical trial and give Connor a chance at life, his only chance.
They launched a Save Connor video in October. As of Feb. 19, it has raised more than $400,000 with more than 5,700 supporters.
The campaign slowed down over the holidays and Connor’s family is recharging it for 2021.
“We must. We are a very long way from the total dollars needed to fund this clinical trial to hopefully Save Connor and other kids with Sanfilippo Type C” said DiChiacchio.
There are two important research projects that must be funded by the end of June, and these total $1million. This is for the final pre-clinical steps and the first step of the medicine production (drug).”Real progress can be made here, but we are short by about $600,000,” said DiChiacchio. “Our near-term goal is to reach $1M at SaveConnor.com by the end of June, which is also Connor’s 13th birthday.”
“We start this boost by released a new video on Thursday night of our “First Viewing” of the Save Connor video,” said Dobbyn.
The message that accompanied the “First Viewing” video on Facebook tells the story. It’s real and it’s emotional.
It already has reached more than 60,000 people and been shared more than 700 times since last night, raising an additional $20,000 so far at SaveConnor.com.The version on YouTube at https://youtu.be/MnfZtVz23Hs.