Fall 2016 Newsletter

Fall 2016 Newsletter

FROM OUR PRESIDENT

This issue of the newsletter marks an exciting milestone for the Cholangiocarcinoma Foundation (CCF), as we are celebrating our tenth anniversary. As I think over the last 10 years, I can hardly believe where we started and where we are now.

  • We’ve grown from a small group of concerned volunteers to a small group of employees and a sizeable group of volunteers.
  • We’ve moved from covering the cost of stamps, the website and travel from our own pockets, to awarding over $1.2 million in research grants.
  • We’ve moved from being casually recognized by pharma and biotech, to being asked for our input on new clinical trial concepts.
  • We’ve advanced from pleading for a voice for our patients at the table, to setting the table and inviting others to join us.

We are grateful to so many who have been so generous and supportive of our efforts over the years. We simply could not have had this kind of growth without your assistance. Looking back is heartwarming, but looking toward the future is exciting. By the end of the year, you will see two new patient programs come to fruition (watch for updates in your email).

  • CholangioConnect, is a new patient/caregiver mentoring program. Patients and caregivers can connect with survivors & other caregivers who can help them navigate the sometimes rough emotional waters created by a cholangiocarcinoma diagnosis.
  • Cholangio Trials Explorer is a new program assisting patients to find clinical trials specific to their disease profile.
  • We are already well into planning for our 4th Cholangiocarcinoma Foundation Annual Conference in SLC on February 1-3, 2017.
  • The book 100 Q&A About Cholangiocarcinoma is being updated and will be available at the beginning of 2017.

An enormous thank you to all who have supported our efforts over the past ten years. Together we are making a difference!

Stacie Signature

Stacie Clements Lindsey
Board President and Founder

Stacie Lindsey, Board Chair and Founder

RESEARCH

SPORE

 The annual Specialized Program in Research Excellence (SPORE) Hepatobiliary Retreat was held Friday, August 10th at Mayo Clinic in Rochester, MN. As an invited guest, Stacie Lindsey, CCF Founder and Board President (pictured in center of bottom row) discussed ways that the Foundation could support the NIH grant application process.

2017 ANNUAL CONFERENCE

registration


CAMPAIGN FOR THE CURE

Thank you to everyone who supported this year’s Campaign for the Cure! This year we raised more than $59,000 to improve the quality of life for those affected by cholangiocarcinoma! We are incredibly appreciative of your generosity! If you have not yet contributed towards the Campaign for the Cure, it’s not too late! Together we can make a difference!

RECENT EVENTS

A special thank you to all those who have volunteered to host fundraisers and secure donations for the Cholangiocarcinoma Foundation in the past several months!  We couldn’t do it without you!

  • Charming Charlie’s Fundraiser
  • Annual Bile Duct Cancer Walk In Memory of Levan Gray
  • In loving memory of Greig Steven
  • Cait Telaak’s End of Chemo Extravaganza event
  • East Greenwich Township Schools Jeans Day
  • Andrea Fuquay Memorial/Andrea Remembered
  • Gina Boylan’s Shave My Head
  • Annual Tilley Run
  • Bull Roast in honor of Sharon Sakovich
  • Steven Smart Birthday Celebration
  • Pete Briggs Paddle Out Memorial
  • Kelly Gratz Volleyball/Baseball Tournament
  • Dave Strader Silent Auction
  • Kristin Audet-Fucarille Event in Memory of Melissa Manza
  • Brandy Leidy’s Crawlin’ for a Cure
  • In honor of Lynne Hinton, Our New Angel
  • In memory of Lori Sachare’s 62nd Birthday
  • Ayer Family Ice Cream Social
  • Cranford High Bake Sale
  • Carnevale Family Event
  • Running for Phil
  • Bonnie Schaefer Memorial Run
  • $1 for One More – Erika Kerr
  • Lauren’s Cancer Crawl
  • Valerie’s Crawlin’ Crab Marathon
  • Chicago Marathon, October 9
  • Ragnar Relay Hawaii, October 14-15
  • Baltimore Marathon, October 15
  • 2nd Annual Zulu Race for a Cure, October 29
Andrew Hood (12) with his Mom, Meg and family; sharing stories, educating, bikers, walkers, runners @ their 6th annual lemonade OCNJ Boardwalk Fundraiser in loving memory of Nonna, Maria Domanico

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