Raising Awareness for Susac's Syndrome.

So I was posting short clips all over social media this week to promote a new project I'm working on. Of course I've been trying to promote stuff I'm working on but I'm also hoping to support people worldwide who are living with a rare disease.  

Monday, February 29th was Rare Disease Day‬ 2016. 

I've teamed up with long-time family friend Nancy Goldhamer to produce and direct a ‪short film‬about ‪‎"Susac's Syndrome‬," a rare auto-immune disorder. I recently reconnected with Nancy after a 20 year hiatus. We go way back. My Father and HER Mother were together for more than 10 years. She was sort of a semi/pseudo step sister to my brother and I. Things didn't quite work out. My Dad and her Mom went their separate ways and then we all kind of splintered off in different directions.. exploring life and the world. Then my Dad died. I ended up tracking down and reaching out to Nancy and her Mom a few months ago... just to let them know that Jerry had passed away. Nancy and I started chatting and thats when I learned about Susac's Syndrome. Nancy was diagnosed with Susac's in 2000. 

A few more conversations lead to a discussion about my work as a filmmaker and her desire to make a short film that would help spread the word about her rare disorder. She wanted to put something together that would not only serve as a resource for those suffering from similar symptoms... but also for doctors who may be combing the internet seeking answers.
 
So here we are. We're making it happen. I've interviewed 4 people in California and 1 in Utah. Each person sharing their own unique experience and perspective on this disease... on ALL rare diseases. There is more to come but here are 2 "teasers" clips that shared on Rare Disease Day to show support for the day but also to start getting the word out about the film. 

This is a clip from the upcoming film featuring Stefanie Speed, a mother of 3 living in Yorba Linda, California. She was diagnosed with Susac's in 2005. She is one of the first 100 people in the world to be diagnosed. 


A short film on Susac's Syndrome- Stefanie Speed from James Huffman on Vimeo.


Dr. Robert Egan is a renowned expert in Neuro-Ophthalmology who frequently lectures on Susac's Syndrome, multiple sclerosis and functional vision loss.


A short film on Susac’s Syndrome- Preview with Dr Robert Egan from James Huffman on Vimeo.


For more information on Susac's Syndrome.... symptoms and treatment, you can contact Dr. Robert Egan at eganr8@gmail.com


Stay Tuned for more updates on this project.
 

 

3 comments

  • Laura Agerton

    Laura Agerton P.O. Box 60323 Reno, NV 89506

    I would love to be a part of getting awareness out there about Susac Syndrome. I would love to tell my daughters story, she passed away January 17th, 2017 real fresh and painful. I have donated her brain and eyes to the Cleveland Clinic for research to find out exactly why she could not recover as do the most. Could you please reach out to me when the time is good for you, my Cell is 775-954-XXXX

    I would love to be a part of getting awareness out there about Susac Syndrome. I would love to tell my daughters story, she passed away January 17th, 2017 real fresh and painful. I have donated her brain and eyes to the Cleveland Clinic for research to find out exactly why she could not recover as do the most. Could you please reach out to me when the time is good for you, my Cell is 775-954-XXXX

  • jamescliftonhuffman.com

    jamescliftonhuffman.com

    Hi Laura- At this point... and email would be easier. You can drop me a note in the contact form on this site.

    Hi Laura-

    At this point... and email would be easier. You can drop me a note in the contact form on this site.

  • jamescliftonhuffman.com

    jamescliftonhuffman.com

    And I'm so sorry for your loss.

    And I'm so sorry for your loss.

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