Julians Voice

Advocates for Tuberous Sclerosis Complex, a rare genetic disorder with only 50k documented cases in the US.

This page was inspired by TS Warrior Julian Kimerling.

Address

New York, NY

Telephone

(917) 306-7377

Website

http://www.juliansvoicetsc.org/

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Heart River Center for Intuitive Healing

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Advocating for our son..

Julians Dad Josh here.. I’m proud to say that on November 3rd, 2019, my good friend Marko and I will be running in our first marathon to raise money and awareness for Tuberous Sclerosis Complex. Also known as TSC, a rare genetic disorder that has affected Julian his entire life.

As a result of this disease, Julian has severe developmental issues. He's non verbal, can't dress himself or use the bathroom on his own. He’s been in intensive therapy since 9 months old and progress has been slow and agonizing.

Getting answers from medical professionals has been equally as agonizing in that we haven’t been given any effective treatments or even an idea if Julian is capable of progressing as he gets older.

A few months ago my wife Priscilla and I attended our first Tuberous Sclerosis Alliance conference. We finally met doctors who understood what we were going through and showed us treatments they were working on to cure this horrendous disease.

With a glimmer of hope to make a difference, Marko convinced me to go for it and run the NYC Marathon and as a result we are completely dialed in to raising as much money and awareness as we can to help them.

This is why I created Julians Voice. My son is an inspiration to me in every sense of the word and until we can get him to express himself, Priscilla and I must be his advocate.

100% of all funds raised with the Julians Voice campaign go to the Tuberous Sclerosis Alliance to help these doctors find a cure.

Please follow us on our journey as we train for the NYC Marathon.

We will post interviews, training sessions, sponsors, lots of laughing, some arguments, triumphs as well as not so triumphant moments.. and of course updates on Julians overall progress as well as any other interesting content along the way.

We appreciate you sharing our story and a donation would be appreciated if you could spare it.

Donations can be made at juliansvoicetsc.org (just click on the DONATE NOW button).

Much love everyone and thanks for watching!