075: Welcome back to the Special Needs Mom podcast. Today I’m doing something totally different and I have a dad on the show with us. Daniel comes to us with the unique circumstances of losing his special needs son 18 months ago. Daniel is very involved in the film industry and has started a channel (to download on streaming devices) to raise awareness for rare disorders!
In this episode, we talk about how to cope with internal conflicts and personal relationships after receiving such a tough diagnosis and a short life expectancy. Daniel explains that it’s often hard to decide how much information to share about their circumstances but he never wants to do a disservice to his sons memory.
We also talk about role models in the special needs parent community. He emphasizes that you can use whatever gifts you have to serve the community or your own family. You don’t have to do what someone else is doing. Daniel wants to encourage you to do what you can do and enjoy doing.
Who is Daniel: At the age of 12 months Daniel’s first child Lucas was diagnosed with the rare disease Menkes Syndrome. After adjusting his expectations of what raising a child might look like Daniel began to tell Lucas’ story with a short documentary. That film led to Daniel co-founding DISORDER: The Rare Disease Film Festival and later The Disorder Channel, both dedicated to spreading awareness for patient families facing any of the more than 7,000 rare diseases.
One of Daniel’s stories about Lucas won the 2015 Rare Patient Story Award from Global Genes. His award-winning 12 minute documentary on Menkes Syndrome is narrated by Oscar nominee Mary McDonnell. In 2008 he founded the Ballston Spa Film Festival. He was a pioneer of original content online (now called web series) and co-wrote and co-produced the internet’s first animated series. He has created videos and marketing materials for American Cinematographer, PBS, RightRice, bio-techs, hospitals, most major movie studios, TNT’s “The Closer” and HBO’s “Curb Your Enthusiasm” among others. He currently works as Global Genes’ Assoc. Director of Community Engagement.
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Connect with Daniel
IG: https://www.instagram.com/disorderrarediseasefilms/
LinkedIn: https://www.linkedin.com/company/disorder-the-rare-disease-film-festival/
Facebook: https://www.facebook.com/rarediseasefilmfestival
Connect with Kara:
IG: https://www.instagram.com/Kararyska/
Website: https://www.kararyska.com/
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