Any connections with Accendatech?

Today, my club is sharing with you a plea that has been made by the father of Neev Kolte, a boy that my club went to see with Make-a-Wish. Neev is a big fan of Ferrari, and his wish was to have a day with Ferrari.

We are informed that Neev is not doing well. Their last resort at this point is an experimental drug that has in its initial trial shown promise. The problem is that thus far they have been unable to make contact with the company that produces the drug.

More than a few times I have found that Ferrarichat members have had fortuitous contacts that have proven useful to those in need in various circumstances. Because some members do business in China and may have additional contacts there that could be helpful, I am sharing this plea from Neev's father, Sandeep. The following was provided to me this morning. Thank you in advance for any assistance you may be able to provide in helping them overcome this hurdle.

Background
My five-year-old son, Neev Kolte, was diagnosed with a very rare brain tumor, known as DIPG, in August 2020. All the medicines and treatments for this tumor are experimental with no cure yet. One such medicine is made by a company named Accendatech.

Our medical team believes a medicine, ACT-001, made by Accendatech, looks promising based on Neev's mutations and tumor profile.

Accendatech is based out of China. They also have a presence in Houston, Texas. However, we could not establish any contact with their office there. The company is currently running a trial in Australia for adults for this medicine and the results have been promising.

What do we need?
What we are looking for is a connection with anyone on the Accendatech executive team in China or the USA.

If we establish contact then we would like to request the medicine on a compassionate basis from this company. Without such a connection, most of the time, our experience is that requests go unheard. We have already written to the company but have not heard back.

With an established connection, we think if the request for compassionate use comes from our primary neuro-oncologist, Dr. Sabine Mueller in UCSF, it will help a great deal. She will discuss our son's case with the company's medical team. If approved, she will be the one to administer it. She doesn't know anyone at this company but is willing to work with us if we manage to establish some contact within the company.

If you have any questions or need any additional information, please feel free to contact me. I can be reached on my cell phone at +1 619.341.0836 or by email at [email protected]

Thank you for considering whether you or anyone you know may be able to help us make a connection with Accendatech.