1 (edited by marions Wed, 22 Jan 2014 12:36:48)

Topic: RARE - the documentary

I have taken this from Sharon Terry's mail (Genetic Alliance) and am wondering whether someone in the Seattle area (or beyond) is interested in attending this showing.

Maren Monsen’s movie “Rare” is going to be screened at Seattle Children’s Hospital/Research Institute as part of Holly Tabor's bioethics film series. Two local geneticists/genetics researchers are part of the panel, they would love an individual or family who might also be willing to participating and talking about the issues in the film? Unfortunately, they do not have a budget to pay anyone, but they can buy them lunch and pay for parking. Holly really thinks the family/advocacy perspective would be really important to have as part of the discussion.
The movie follows Hermansky Pudlak Syndrome, and Holly wants to use it as a springboard to educate her folks about all rare diseases – so any rare disease person or family is fine

http://www.rarefilm.org/news.html

I believe that this particular invitation would help us gain attention given to the disease of Cholangiocarcinoma.
Please contact me, marion.schwartz@cholangiocarcinoma.org for further instructions.

Thanks for considering,
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: RARE - the documentary

When is the showing?

Re: RARE - the documentary

I don't know the date; it had not been listed.  I am awaiting their response to my e-mail and will pass it on as soon as it comes available.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: RARE - the documentary

Once we know the date I am sure I could attend. I will wait to see for the date.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: RARE - the documentary

I just heard back from Sharon (Genetic Alliance)  They have not set a date as of yet and the competition will be rather stiff for acceptance.  I will work together with you and Susie.  Let's submit your names by next week if you so choose.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: RARE - the documentary

BTW:  I met the Mom of the daughter depicted in this movie.  She lives in the East Bay are of San Francisco.  For some time now I have been raking my brain as to how we could make a movie as well.  I spoke with Documentary Producers and others in the film industry.  Again, it is a question of money we just don't have. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER