Topic: Cholangiocarcinoma Foundation

We are ready to start putting together the Cholangiocarcinoma Foundation.

The first step is establishing a foundation board and we need your
help in identifying potential foundation board members.  In order to
put together the best possible foundation board, we need to assemble a
diverse group of people who are connected to cholangiocarcinoma.   We
think the best way to do this is to give you some of the critieria we
are looking for when considering prospective foundation board members.

Prospective members of the foundation board will be selected based on
two attributes:  influence and/or affluence.  In addition to this,
every board member should bring a level of expertise to the foundation
in one or more of the following key areas:  finance, investment,
strategic visioning, long-range planning, legal expertise,
organizational ability and community involvement.

Members of the board must be committed to individual giving as well as
participate directly in the fundraising efforts of the foundation.


Many patients will not have the time, finances or health to do the
work of a foundation board member, but may have family members,
friends, business associates or others who have been wanting to do
something to help.

The mission of a foundation is to raise money for a specific purpose.
Those who have influence and/or affluence can give and can influence
others to give.   A strong foundation board will help attract strong
medical advisory board members.  This is critical for establishing
credibility within the medical community which in turn will have a
direct impact on the treatment of cholangiocarcinoma.

This needs to be an international effort.  In order to maximize the
impact the foundation has on this disease we must work together.

Once the board is in place we will begin organizing the rest of the
foundation.  There is room for every skill and every level of giving.
Because we are a relatively small group, we will be calling on you to
help.  Rick will be setting up a foundation link on the website, there
you will find updates on our progress, areas in which we need your help or expertise, upcoming events, etc.

If you have someone you think should be considered for a position on the Foundation Board, or if you have any questions please let me know.

You can reach me at this email address stacie@cholangiocarcinoma.org

2 (edited by twilhelm Sun, 09 Jul 2006 13:27:11)

Re: Cholangiocarcinoma Foundation

Thank you to all who have been working to make this foundation a reality.  My time is limited, but I do have nonprofit and fundraising experience and could possibly help in some way.  I'll be looking forward to hearing about progress on the foundation.  This is an amazing thing you are doing.

Best Wishes,

Tiffany Wilhelm, Wisconsin
(Niece of Allan Jenewein)

Re: Cholangiocarcinoma Foundation

My husband was diagnosed in January 06 with CC. I am looking forward to hearing about any up dates on the foundation. I have no experience in fundraising but would help in any way I can. I am a business owner and am well know in the community.
Best Wishes
BJ

Re: Cholangiocarcinoma Foundation

We lost my Mom a few weeks ago and I miss her everyday. When I read the blogs eveyone is experiening the same thing.   I pray for everyone on this wonderful website. We are in a special group.  We all understand each other so much. I wish we could form some sort of meeting to see each other.  How I know it is impossible for most everyone as your loved ones need  family and friends now. 

I would really like to learn more about the Cholangiocarcinoma Foundation. 
Please forward any new information on the foundation so that we may help.

I know alot of people on this website want to fight for a cure and get involved in the foundation.  Everyone in this special group understands what I mean.

Maybe a special monument or something special for the people who  fight so hard with this rare cancer.

Re: Cholangiocarcinoma Foundation

What is the status on the Foundation.  I would like to contribute to foundation.

Re: Cholangiocarcinoma Foundation

The foundation is heavy in paperwork right now.  The Board has been selected and they are ready to get started.  We have a few more things to prepare before we can get to work or accept donations of any kind. 

We want to do the foundation right and make sure that we are lined up with the most knowledgeable and experienced Dr's and research science that we can find associated with cholangiocarcinoma.

We feel confident that together we can help make good positive steps forward for those of you suffering from cholangiocarcinoma and ease the burden for those of you standing by the side lines wanting to help in some way.

We are hopeful that we can be ready in the next few weeks and then the updates will be frequent.  We appreciate so much all the interest in the foundation and the willingness of many to put so much time and effort into making this all happen.

Thanks again
Stacie

Re: Cholangiocarcinoma Foundation

my mother was diagnosed a year ago with stage IV (advanced). i know that i am lucky she is still alive but none of us know for how much longer. i became involved with the leukemia & lymphoma society because i did not see any CC resources and i wanted to feel like i was contributing in some way. this is my first time fundraising, and i am currently halfway to my goal of raising $5000 for LLS, but if there is any way i can help with the CC foundation, obviously this would be a huge priority for me. i am ready and willing to help, just let me know what i can do.

Re: Cholangiocarcinoma Foundation

Tabtabs,

Thank you so much.  We would be delighted to have your help.  We have already started receiving funds and this has been very exciting for all of us.  Rick is going to be setting up a separate (yet connected) site that will have all of the foundation information:  board members, the mission statement, upcoming events, how you can donate, etc. 

I've put you on my "special" list.  Once things start rolling out we will contact you for your help.

Again, thanks so much.

Stacie

Re: Cholangiocarcinoma Foundation

Staci,

I also lost my mother to this cancer and have been a part of this website from the beginning.  I would very much like to contribute to this cause and will put my best effort foward for this cause.  I pray for my Mom and also pray for Kelly,Sam and all the others that have been a part of this big and close family.

Please know that I am willing to help in this very important cause so close to my heart.

I look forward to your email.