"The End ME/CFS Project" Fundraiser was amazing!

[Gingergrrl]

My husband, step-daughter and I along with @NK17 and her friends had the opportunity to attend the fundraiser this morning in Hollywood for NIDA and OMF's "End ME/CFS Project." It was an absolutely amazing event that I feel lucky to have been a part of and felt like I was witnessing history in the making.

The event started with a very touching speech from Linda and Don Tannenbaum (the founders of NIDA) about how their daughter first became ill with ME/CFS and how they created NIDA. They introduced Dr. Ron Davis who was impressive beyond words and also heartbreaking when he spoke about his son who is severely ill from ME/CFS. He spoke about the OMF and Open Medicine Institute (where I am also blessed to be receiving my treatment) and the level of commitment of these researchers to solve this illness is unlike anything I have ever seen. They are brilliant, dedicated, focused, determined and working around the clock to find a bio-marker, treatment, and cure.

After that, Ryan Prior and Nicole Castillo spoke about the process of creating, filming and directing "Forgotten Plague." They were both extremely articulate and passionate about their goal. The movie is not quite done so we were shown a "Working cut" which still had edits to be made and an original musical score to be added. It was a beautiful film that at parts were a tear-jerker but overall was inspiring and made me incredibly hopeful that this disease will be solved in my lifetime.

Many of our leading doctors were interviewed in the film including Dr. Peterson, Dr. Kogelnick and Dr. Kaufman of OMI, Dr. Lapp, Dr. Lipkin, Dr. Komaroff, Dr. Klimas and her research team at INIM, Dr. Montoya, Staci Stevens and Chris Snell of the Workwell Foundation, and of course Dr. Ron Davis (and my apologies to anyone I am accidentally leaving out!) There were many patients and their families who told their stories in the film and I could relate to every single one.

After the film they had a reception and we had the opportunity to speak with Ryan Prior, Linda Tannenbaum, and some of the doctors and researchers. The event was free but we were able to make a donation to the "End ME/CFS Project" and spoke with other patients re: treatments we are doing. The film will have it's official premiere in 2015, once it is completed and all the edits are done, and then Ryan will be having screenings at festivals and in towns all around the world.

It was truly a blessing to be able to attend this historic event.

 

[Roy S]

Thanks for the encouraging report, @Gingergrrl, and your donation.
　

 

[Sasha]

Thanks for such a detailed (and eloquent!) summary of the event, @Gingergrrl - it's great for those of us who can't attend these things to know what happened. It sounds amazing! I'm glad you were able to go. It sounds very inspiring. I wonder if anyone filmed it!

 

[Sasha]

Pic of Jen, Ryan and Nicole at the fundraiser:

https://www.facebook.com/canaryfilm...41826.224225441048530/474462612691477/?type=1

For those who can't see FB, she says:

The filmmakers! At Open Medicine Foundation fundraiser and private screening of Forgotten Plague in LA (Jen Brea, Nicole Castilo, Ryan Prior). Blown away by what Ryan and Nicole have accomplished.

Before you ask: the film is almost but not quite finished. They are applying to festivals which require their venue to be the film's premiere for inclusion. So still a great many months before the film will be released but it is beautiful and is going to do a lot of good work in the world!!

With Forgotten Plague, OMF, Blue Ribbon,#MEAction, Canary and so many other initiatives, I think the next few years have the potential to be truly amazing.

 

[Snow Leopard]

Glad to hear how positive the event was.

 

[NK17]

Thanks for such a detailed (and eloquent!) summary of the event, @Gingergrrl - it's great for those of us who can't attend these things to know what happened. It sounds amazing! I'm glad you were able to go. It sounds very inspiring. I wonder if anyone filmed it!

It was filmed by a cameraman.

Linda Tannembaum spoke first, her husband second, third was Ron Davis and then Ryan and Nicole together.
Truly inspiring!

My dear friends who attended with me are both veterans in the movie industry (one as a writer and the other as a producer) and were blown away by the medical mystery, the human suffering and the urgent need for public awareness in order to get the just amount of money for Dr. Davis's team of researchers.

Now we need to pitch in and help them help us by raising money. Every amount counts.

 

[Sasha]

It was filmed by a cameramen.

Linda Tannembaum spoke first, her husband second, third was Ron Davis and then Ryan and Nicole together.
Truly inspiring!

My dear friends who attended with me are both veterans in the movie industry (one as a writer and the other as a producer) and were blown away by the medical mystery, the human suffering and the urgent need for public awareness in order to get the just amount of money for Dr. Davis's team of researchers.

Now we need to pitch in and help them help us by raising money. Every amount counts.

That's great - I hope they put some of the footage up somewhere. I'd love to see the speeches - it sounds as though they were fantastically effective!

I've just given them another donation (sounds like they earned it!). Here's the link:

http://www.openmedicinefoundation.org/ways-of-giving/donate/

 

[Gingergrrl]

Thanks for such a detailed (and eloquent!) summary of the event, @Gingergrrl - it's great for those of us who can't attend these things to know what happened. It sounds amazing! I'm glad you were able to go. It sounds very inspiring. I wonder if anyone filmed it!

@Sasha Thank you so much and I was trying to write everything I could remember and realized a few things I left out that I am going to post shortly.

That's great - I hope they put some of the footage up somewhere. I'd love to see the speeches - it sounds as though they were fantastically effective! I've just given them another donation (sounds like they earned it!). Here's the link:http://www.openmedicinefoundation.org/ways-of-giving/donate/

As @NK17 said, they did film the speeches, and I think they said that they will be up on You Tube at some point, although I am not sure when or where! Thank you for posting the info to donate to OMF and for your donations!

 

[Gingergrrl]

I wanted to add two things from the event and film that I forgot to post yesterday.

The first is that Ryan spoke in detail about the Blue Ribbon Foundation that he started which will provide a fellowship for first and second year medical students in the U.S. to work with the top ME/CFS doctors (since they learn close to zero about it in med school.) In the film he spoke with a friend who is in med school who learned nothing about it but would be a perfect candidate for the fellowship which is a way to bring new doctors/researchers into the field as many of the top ME/CFS doctors will be retiring in the next 5-7 years.

Second, in the film Ryan interviewed Dr. Michael Van Elzakker who is working on the infection of the Vagus nerve theory as a potential mechanism/cause of ME/CFS. Dr. Van Elzakkar explained the theory in detail and was then interviewed with Dr. Komaraoff who was excited about this theory and about the fact that a new young doctor was so interested in the cause and field of ME/CFS.

Earlier Ron Davis said in his speech about how ME/CFS is the last huge medical illness that is not solved (like MS or epilepsy or other diseases used to be) and that it is actually a fascinating opportunity for young doctors and researchers except they are not taught about it in med school and they do not know (or they are taught that it is a psychiatric issue- I don't think he said this and don't want to misquote him but I am adding that part.)

 

[Sasha]

Thanks, @Gingergrrl - it's really interesting to hear all about this. It's a very exciting initiative!