I was contacted by a producer name Lyle Dohl this week.  He works for a company called Scott Free, owned by Ridley Scott.  In 2011 Scott Free produced a documentary called "Life In A Day".  Here is a clip from You Tube that you can view:  http://www.youtube.com/watch?v=bT_UmBHMYzg

This documentary inspired Joaquin Phoenix and Casey Affleck who are in the process of producing a new documentary which will feature
patients who are facing a terminal prognosis and have moved past the point where they are seeking treatment. 

They were searching for information for the documentary and found our website and contacted me.  Here is the information that Lyle sent to me. 

"I’m searching for individuals in the Los Angeles area who are living with a terminal illness to be the subject in an untitled documentary series for cable television. Our verité documentary project is looking for compelling individuals, and the people surrounding them, who are open to sharing their story and hospice experience documented.  Again, LA area is preferred, but if it's the right person, we're very open to talking. 

Our approach uses very small crews with minimal equipment so as to be as unobtrusive as possible. The fly-on-the-wall method allows for authentic storytelling – our intention is to honor, celebrate and respect their life."

If you would be interesting in participating you can contact Lyle at lyleworks@gmail.com

The foundation is not involved in this project in any way.  We are simply passing the information on to you. The information above is all the information we have.  If you have any questions about the project you will need to contact Lyle.

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(2 replies, posted in Announcements)

I receive a lot of e-mails and phone calls about fund raising for the foundation.  First, I want to say thank you to all of you who have spent time and resources to raise money for the foundation.  Your efforts to make the lives of patients and their families better are amazing.

Realizing that so many of you want to do something but may lack the experience and know how, we have put together an extensive new section of the website under "Get Involved" it is the local fund raising section. 

Our thanks to board member Dawn Lyon for putting this section together.  We want to assist you with as much information as we can from those experienced in doing fund raising.

The amount of information and help in this area is really spectacular.  Even, if you have never attempted anything like this, you will have all the tools you need to get started.

Please let us know if there are improvements or additions we can make.  We would  also like to post success stories as well, so please send them to us at info@cholangiocarcinoma.org

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(4 replies, posted in Insurance)

Hi all,

I often receive e-mails and phone calls asking for financial assistance.  I remember very well looking over Mark's bills and frequently being shocked. 

The foundation is not set up to assist in this way right now, but we hope as we grow we will be able to do this.  I'm wondering if any of you have received financial assistance through any of the national cancer foundations or any other source?  I'm not looking for information on local assistance that you have received, unless the organization does so in all of the states.

There is a lot of information posted on our site and other sites about different organizations you can look to for assistance.  However, I'm wondering if anyone has actually received financial assistance specifically for their medical care with cholangiocarcinoma.

I would like to be able to pass on specific information when patients contact me.

Thanks,
Stacie

Hi Ranee,

Thank you for your questions about donations.  We receive many donations through PayPal, there is an "in honor of" section where we can keep track of donations for a specific person.  We also receive a lot of donations through the mail, these will usually come with a note that assists us to know who the donation is in honor of. 

However we receive donations almost daily that have no designation.  We don't know who these donations are for and there is usually not a way for us to track down this information.

Many families will send a request for us to send them a list of donations for their loved one and an address where they information can be sent.  Unless we have a physical address for the family (or e-mail address) we don't have any way to contact the family and let them know of the donations.  I hope this answers your questions.

Stacie

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(25 replies, posted in Events & Fundraising)

Kris,

Thanks so much for your kind words.  It really makes all of the work worthwhile knowing that we have support like yours.

Let me clear up just a few things that might be helpful.  First, we have contacted the Payton Foundation.  I talked with their director last year.  We've read through their materials and looked at their numbers and talked about them at several board meetings.  Does the foundation mind if any of you want to participate in the run/walk activities...absolutely not.  What you want to be mindful of is the fact that the Payton Foundation does not do any research on cholangiocarcinoma.  They have two wings of research, one does research for children's cancers and assistance in that area and the other does "alternative" research.  So any money you raise and anything that you do will go to their chosen causes. 

Will we ever work with the Payton Foundation?  Possibly, it really depends on what happens in this next year or so.  As you all know Marion is involved at the NIH, this is very important as we are able to participate in ground level decisions that will affect research and research dollars going to cholangiocarcinoma.  We hope to find an advocate that will be able to participate at the NCI for this same purpose.  So, that we are working all possible avenues of research dollars for cholangio.

We are looking at a proposal right now that will continue funding for a young researcher who is focused strictly on cholangiocarcinoma.  We are working with another foundation made up of Dr's and researchers, they do not focus on advocacy at all.  However, they can not get funding through the government without advocacy so we serve different purposes, but together we hope to make some wonderful things happen - however we want all the monies that we grant to be used strictly for cholangiocarcinoma, this is where our passion lies and this is where our focus will remain.

We will be participating in a symposium in April this coming year, which will be bringing together the best and brightest minds in cholangiocarcinoma in the US.  We've want to work together to drive what is happening here in the US and we've got to get major cancer centers to work together.  Next year we will open the symposium to the world and this is where things will really begin to happen.  Once the US can come together and work together we will reach out to Asia, S. America, the UK, everywhere...  Can you imagine?

We've just finished translations of our first brochure in Japanese and Spanish, they will be on the website soon and will be downloadable.  The Thai version will be coming in the next few weeks.  We hope to begin translation of informational pages of the website in the next few weeks as well, first in Japanese and then we'll follow with other languages.  We will also be doing general updating of all the pages. 

There is a lot to do, but we are committed to making sure that you find the information you need and that you also find the support you need.  We appreciate so much all the volunteers who are assisting us to make this happen, we certainly couldn't do it without you.

Much love to you all

Stacie

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(4 replies, posted in In Remembrance)

Rachael also sent this information along as well.

Please visit this website http://jeffgerrish.blogspot.com/ to view the Memorial video my family made back in February. We played this at my dad's Memorial service. You may have to copy the link into your address bar. When the site comes up you should see a little box with a picture of a ceramic baby looking up. On the left corner there is a play button. As you press that you should begin to hear music and see the show.

Jeff was always looking toward the future.  He had a deep love for you and was concerned that his passing would cause you undue grief.  Because of that he let me know a few months ago that he would be working on a message for you after he passed.  His sweet daughter Rachael sent that message to me this morning and it follows.  We will also be posting another item he left for you in hopes that you would feel his love.

Dear Patients and Caregivers,

By the the time you read this letter, I will have passed over and be continuing my life of eternity. It was a pleasure helping and being helped by you all.  Each and everyone of you are heros! and inspired me. I can feel the presence, of brothers and sisters of a larger family. You all share unconditionally. I believe you all are helping the Lord Jesus.  If not looking and trying to find a cure, it's consoling, giving, and sharing your Faith.  This site and it's members have surely made my journey a peaceful one. Each and every day was cherished. I will continue to pray and assist in whatever way the lord has planned. I hope to meet all who have passed over and welcome all who will come after me. As I sit hear typing, with my Bible given to me after my fifth year of Sunday School and Certificate of Baptism in my lap, I read Psalm 23.  I always carry on, so I'll leave you with another Psalm of David.  When God seems far away Read Psalm 139.  Thanks again to you all and keep up the super work. Together, you will build awareness !

God Bless You All !
Jeff Gerrish

8

(0 replies, posted in Announcements)

We need a special volunteer.  Marion needs some assistance in the advocacy area.  If you have been thinking at all that this is something you might be interested in, we need you.

Marion is very talented and one of the things that I have come to really appreciate is that we all have different talents.  Would it make you nervous to be at a huge convention full of the most prestigious Dr's in the nation and world?  Would you feel more nervous openly approaching them, enthusiastically giving them a full explanation of what the foundation is trying to do and then asking them how they would like to be involved.  This is one of Marion's talents.  She is not afraid and she is boldly moving things forward.  Now, this kind of thing may make you tremble just thinking about it or it might be right up your alley.  One way or the other we need you.

One thing that Marion really needs help with is keeping all the details organized.  So, if the paragraph above made you nervous, but sitting at your computer and organizing the information and contacts sounds a little more up your alley then this would free Marion up to do more of her work.  This is a behind the scenes job (as most of us are).  But Marion could really use the help.  So if you are someone that has some time available and would like to do something to assist.  If you are detail oriented and very organized, then please send me an e-mail at stacie@cholangiocarcinoma.org. 

Thanks so much!
Stacie

9

(8 replies, posted in Announcements)

Today I'm a little emotional but felt I should share with you something that usually would remain behind the scenes.   Sara Hinkley is one of the founding members of this foundation.  She has given an enormous amount of her personal time and talents to help move this dream forward.  We could never have accomplished what we have without her hand involved in every step.  She has become a dear friend to me through this shared experience. 

Today Sara is at MD Andersen with her sweet husband Seth.  He has been diagnosed with cutaceous b-cell lymphoma, they are involved for the next two days in various tests and with several different specialists and Dr's.  This is another rare form of cancer, which can be either highly treatable or terminal.  They don't know which form he has yet.  After the testing, they will wait for 7-10 days to receive their results.  I think everyone here knows how difficult it can be to wait. 

I would like to ask you to include Seth and Sara in your thoughts and prayers.

10

(29 replies, posted in Introductions!)

Hi Angela. 

Rick can probably respond best to this as he has been working with the company to get the bracelets.  They should be here anytime.  As soon as we get the shipment we'll let you know.

Stacie

11

(13 replies, posted in Members' Cafe)

Lainy,

Just wanted to reply to your information about the Susan M. Costa foundation.  We try to get in contact with every one of these causes and we are always looking to see if another one pops up.  You are right, if we all worked together it would be great.  What we have found is that each foundation has a different purpose.  Some of the private foundations are set up simply to help offset medical costs for the family or other private interests.

That is not our goal.  We want to affect treatment world-wide for cholangiocarcinoma patients.  We are working to get the relationships in place with the GI Dr's at major cancer centers across the nation so that we can move forward on the National Database which will help every patient with cholangiocarcinoma.  We also have to have the help of the pharmaceutical companies - so we are working on all fronts.

Doors are opening to us all over.  This has taken some time as we have established a presence at these conferences and met repeatedly with Dr's working on this cancer. 

Sara and Marion just returned from a conference in San Francisco and put together several pieces of this complex puzzle.  Each time we are out at conferences, on conference calls with these Dr's we are moving closer to our goal.

All that being said, we are open and willing to work with anyone who wants to see broad gains in cholangiocarcinoma research.

Thanks so much for keeping your eyes and ears open to what's happening out there, it really helps.

Stacie

Maryanne,

You have shared an amazing journey with all of us.  Thank you! 

I hope there is a huge Christmas party in heaven with all of cholangio patients we've lost, and they are thinking warmly about all of us just as we are of them.

Maryanne you are an amazing woman.  Joe could not have been loved and supported more.

Stacie

13

(3 replies, posted in Suggestions)

Devoncat,

We always try to acknowledge the family.  There is a place on the Paypal donation where it asks who the donation is in honor of and usually people will let us know, then we can thank them personally.

Great suggestions.

14

(10 replies, posted in General Discussion)

A quick update on Peter.  His surgery is complete.  Three hours of preparation and 2 hours of actual re-routing surgery.  They are hopeful that he'll be able to eat and drink now.  The recovery will take some time and he is resting.

Stacie

15

(23 replies, posted in Announcements)

I did get your message Gavin.  Sorry I've been out of town the last two weeks, but am firmly planted until the end of the month.  I'll be sending the next batch of brochures out soon.

Karen, great news!  Thanks for distributing the brochures.  Every little bit helps.

We would love to talk with him.  Let me know if you need some of my cards so he has all of our contact information.

Stacie

I want to give a very brief update on our meetings in Houston.  I am out of town for the next few days and will give a more lengthy update when I return.

We had a great meeting with Dr's from MD Anderson on Friday evening.  We spent about 2.5 hours discussing cholangiocarcinoma and what we could do together and independently to make a difference. 

We discussed sponsoring a National Database of cancer centers treating cholangiocarcinoma.  This will be a place where physicians will input patient treatments, course of disease and other critical data, that will be accessible to other physicians treating cholangiocarcinoma.  Can you imagine how amazing this will be for patients.

We are also excited to announce that this summer we will be starting the first annual fund-raising campaign for cholangiocarcinoma.  We will use the money raised from this annual campaign to support young investigator grants focused on research in cholangiocarcinoma. 

Also, we have added a new board member.  One is loved by all of you.  Marion Schwartz.  Marion will continue to head up the advocacy end of things for us, but her input on the board will be invaluable.

I think Sara will update on a few more of the specifics and then you will be able to sit back and watch Rick go.   He has already begun as he has added donate buttons for those who want to donate from Canada and Europe.  Thanks so much for your patience with this, we are trying to make things as easy as possible for everyone.

My heart feels like it could burst.  It could not have been a more encouraging meeting and I got to spend a weekend with people I adore, serving more people that I adore.  Who could ask for more than that!

Love to you all
Stacie

18

(25 replies, posted in Thought for the Day)

Laura,

I read Emoto's book and thought it was fascinating.  My sons looked at all the pictures and were amazed, they wanted to do their science projects on this.

Right after I read this book I took my labler and put "love and gratitude" in the glasses that I drink water from all day long.  My sweet husband (ever patient) said, "what have we been reading"  (haha).

I'm looking at love and gratitude all day long.

Stacie

19

(10 replies, posted in General Discussion)

Peter asked me to share a few thoughts with you. 

"I'm fading.   Every task takes great effort and I'm becoming more reclusive.  I weigh 126 lbs.  I am able to get in the woods most days.  I am drumming (native american hoop drum),  in touch with my spirit guides and doing my inner work.  I remain in the best place I've ever been in so many ways but my body is preparing to leave."

He said that he's sorry he hasn't been able to post on the discussion boards, but he's been learning that he has to say no to many things.

I know that sometimes when someone stops posting we all go into a little bit of a panic.  Every time I talk with Peter or get an e-mail from him I feel his peacefulness and just wanted to pass that on to you so that you can know that he is alright.

This is the hardest part of this job for me, coming to grips with constant loss.  It is also the biggest blessing.  I feel like I'm working among angels.   I feel truly blessed to see you reach out to one another and know that many of you are doing much behind the scenes.  You are a blessing to me and I'm grateful for all that you do.

Stacie

20

(25 replies, posted in General Discussion)

Yes, please be sure to take a photo.

21

(23 replies, posted in Announcements)

Anyone who would like some brochures to distribute locally, please just e-mail me at stacie@cholangiocarcinoma.org and send me your mailing address.  We'll get those right out to you.

If for some reason you have requested brochures and they haven't come, please send me another e-mail.

Thanks so much!
Stacie

22

(23 replies, posted in Announcements)

Raye,

Absolutely!  Why don't you give me a call.  Email me at stacie@cholangiocarcinoma.org

Stacie

23

(7 replies, posted in Announcements)

Thanks so much for getting these out to the offices, where the patients can find them. 

Stacie

24

(0 replies, posted in Announcements)

We've updated the volunteer area and thanks to everyone who has been so patient.  Thanks to Amanda who will be helping us in this area.

Rick has posted very brief descriptions of "some" of the opportunities that are available.  If you are interested, trust me, there is plenty to do.  Most of the jobs can be split up in to smaller pieces if you don't want something big or if you do - feel free.  Amanda will help to match you up with something that feels right for you. 

We will be constantly updating this area as things are always coming across our desks that we could use help with.  Read through the area and see if anything looks interesting.  However, don't stop there.  If you see something that you'd like to be improved or if you see an area that could be shored up, please send us your suggestions.  This is your website, and we want you to have all the information you need here. 

Thanks,

Stacie

Thanks Donna,

If you will send me a mailing address at stacie@cholangiocarcinoma.org - then I can get those right out to you.

Stacie