Posts made in October, 2012

Donna Strawn-Smith, Honors Her Son Todd Ramberg

Posted by on Oct 22, 2012 in Uncategorized | 1 comment

Donna Strawn-Smith makes a variety of beautiful blankets to raise money and create awareness for the Cholangiocarcinoma Foundation.

Donna sends weekly donations to the foundation in memory of her Son Todd Ramberg (39),  of Huntington Beach, CA. He is deeply missed by his family and friends. His memory remains alive through these beautiful hand-crafted blankets.

Donna, thank you for your kindness and generosity in support of the Cholangiocarcinoma Foundation.

Todd’s Story:  http://www.mem.com/Story/4462800/23701877/23701881?title=Biography

Please contact Donna to order a blanket: donnasmith1@sbcglobal.net

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Annual Board Meeting

Posted by on Oct 15, 2012 in Uncategorized | 0 comments

The Cholangiocarcinoma Foundation annual board meeting took place October 12, 2012. Plans for 2013 were approved as we continue to work toward the foundation’s mission of CURE – Collaboration, Understanding, Research and Education. During the meeting, the board voted in a new President, Stacie Lindsey. Stacie has been volunteering since the foundation’s inception and on the board for the past five years. Also added as the board’s Treasurer is Lawrence Goodfield. Lawrence is a Senior Manager with PricewaterhouseCoopers, LLP in Philadelphia. We look forward to his contribution. Find out more about the Foundation’s mission and board members at: http://www.cholangiocarcinoma.org/visionmissionvalues.htm and look for more details on the 2013 plans in the next few weeks.

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BIG News: Percy, one of our own advocates is accepted as a Patient Representative to the FDA Advisory Committee!!!

Posted by on Oct 8, 2012 in Uncategorized | 0 comments

We have BIG news……we have representation on the FDA Advisory Committee.

Our Percy has qualified and has been accepted to function as Patient Representatives to the FDA Advisory Committees.  Congratulations Percy and Congratulations Cholangiocarcinoma Foundation patients, families and friends.

The process of application and acceptance is lengthy, challenging and very time consuming.  Our Percy weathered the storm (so to say) and is now officially representing our patient community and that of other diseases.

A quick overview of the position:

The Patient Representative is responsible for providing the Food and Drug Administration (FDA) and the advisory committee the unique perspective of patients and family members directly affected by a serious or life-threatening disease. The Patient Representative should have:

•    Personal experience with and/or be knowledgeable about the specific illness or condition under discussion by the committee;
•    The ability to articulate the perspective of patients;
•    Experience as a patient advocate
•    Formal affiliation with a patient advocacy organization;
•    The ability to identify issues through communication with patient constituencies.

The Patient Representative’s role is to provide the advisory committee and FDA insight on issues, problems, and/or questions pertinent to the viewpoint of patients and family members living with a specific serious or life-threatening disease. S/he serves as either a voting or non-voting member of the advisory committee.

At the conclusion of each meeting, the Patient Representative will be encouraged to provide OSHI with a brief summary of his/her experience on the advisory committee and suggestions for enhancing patient representation, if any.

The Patient Representative must be well-informed about patient concerns and have the ability to understand and actively participate in advisory committee discussions. The Patient Representative serves on advisory committees when a product or therapy (drug, biologic or medical device) related to a serious or life-threatening disease is under review

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