February 27, 2016 at 11:40 pm #91737marionsModerator
Gary…..Notably underfunded, rare cancers must be supported for research. Don’t expect us to ever reach the notoriety of the major cancers i.e. breast, colon, prostate etc. but not unless research increases, patients will continue to die from these types of diseases.
This is particularly true for Cholangiocarcinoma, a rare, fatal cancer with few options and non existing second line of treatment.
MarionFebruary 27, 2016 at 11:19 pm #91736marionsModerator
Carl….so nice to hear from you and to read about Kristin’s extraordinary efforts for Team Lynn.
Hugs to you and your lovely family,
MarionFebruary 25, 2016 at 12:24 am #91735darlaParticipant
Thanks for sharing this. What a wonderful way to honor and remember Lynn and to help others.
You have a lot to be proud of and thanks to Kristin for taking the initiative to do this in honor of her mom.
Hope you are doing OK. Take care.
DarlaFebruary 24, 2016 at 8:49 pm #91734mbachiniModerator
Thank you Carl for the information and please pass on to your daughter how grateful I am at her efforts to help make a difference for patients and families like ours! Truly grateful!
MelindaFebruary 24, 2016 at 12:49 am #91733gary-rMember
The Greenwich, Connecticut Cycle for Survival event was this past Sunday. My daughter works at a new treatment center opened last year by Memorial Sloan Kettering Cancer Center and they put together a team. Their team raised $11,226. The donations are 100% used for research into rare cancers and they announced that since the beginning of this year, these events have raised in excess of $17 million. They continue throughout the country for another month or so.
CCF is dedicated to our disease, but it’s nice to see other events that will also contribute towards finding cures.
I encourage you to attend if you have one in your area. It is incredibly uplifting & positive. I couldn’t cycle, but I was able to cheer.February 23, 2016 at 9:29 pm #12222scheitrumcParticipant
I am not sure where best to put this post within the discussion boards but I felt that “In Remembrance” of Lynn would be the best place.
My daughter, Kristin, has been involved with “Cycle For Survival” (Memorial Sloan Kettering fundraiser for rare cancer research) the past two years since Lynn passed away in July, 2014.
Her team, “Team Lynn” has raised $17K for this year’s event, scheduled for March, 2016 in New York. That is double what they raised in their first year.
In her first year, Kristin was asked to speak to the group about what being part of Cycle for Survival meant. I’ve attached the video from the event: http://youtu.be/ehHh1rjp6Aw
You may have to copy and paste the you tube link into your internet browser to view it.
Kristin recently sent a message to her sponsors. It describes how money from last year’s event went directly to fund a trial for Cholangiocarcinoma. I am including excerpts from that message.
“With just under 3 weeks to go until we ride, I wanted to send out an update on what Cycle for Survival is doing for rare cancer, thanks to every single one of the dollars you have donated.
TEAM LYNN IN NEW LIQUID BIOPSY SYSTEM LAB: Cycle for Survival’s December challenge was to raise $1.2MM to support the new Liquid Biopsy System at MSKCC – a transformative technology that enables researchers to study cancer more comprehensively by simply drawing a patient’s blood. Doctors say this is a game changer in the cancer world.
Read more here: https://www.cycleforsurvival.org/decemberchallenge
Together the Cycle for Survival community achieved this goal and due to your generosity, Team Lynn was able to raise $1,000/bike for the challenge and therefore “TEAM LYNN” will forever have its name inscribed in the new liquid biopsy system lab. Thank you.
2015 FUNDING ALLOCATIONS: Many of you donated last year as well and I wanted to make sure you saw where every single dollar of those donations went. Here is Cycle for Survival’s 2015 funding allocation information: https://www.cycleforsurvival.org/2015-funding-allocations
$1,000,000 went to “directed support” which includes a project focused solely on cholangiocarcinoma (My mom’s cancer). The description reads: “Cholangiocarcinoma: Drs. Scott Lowe and Maeve Lowery are developing treatments to more effectively target genetic mutations in bile duct cancer; information about drug sensitivity and resistance learned through models created in the lab will benefit patients currently enrolled in clinical trials for these therapies.”
Thank you from the bottom of my heart, and from my team, for your support. Not only does it mean the world, but it’s helping to drastically change the rare cancer world.
I am very proud of Team Lynn and all they’ve done to help fund research. I am especially proud of my daughter for leading this charge.
There is hope. Each day we get closer to solving this challenging puzzle called Cholangiocarcinoma. It’s because we are fighting this battle together that strides are being made.
Love to all patients, caregivers and moderators associated with this battle.
- You must be logged in to reply to this topic.