Reporting back – 2nd Annual CCF Conference, Salt Lake City, Utah
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Hi all!
I am overwhelmed with emotion, but I echo everyone’s sentiments thus far on this post.. What an incredible conference once again… It just keeps getting better and better each year. Melinda’s story is truly inspiring and it was such an honor to be sharing the registration table with such a “superstar” (as I lovingly called her during our time together). It was so wonderful to reconnect with my fellow volunteers, share our individual stories and talk about our loved ones with new members of the foundation family as well. The conference itself was a huge success once again, with incredible physicians, specialists, nurses, researchers and the like, attending from all corners of the globe; all dedicated to helping find a cure for this monster. The research and discoveries being made continue to astound us and provide immeasurable hope to all of us. As the attendees exited on the final day of the conference, tired but determined, we received nothing but praise to pass on to Stacie, Donna, Marion and the entire team.
WE WILL BEAT THIS MONSTER.. I have no doubt.
Love to all,
RobLadies,
A big thank you to you for being there and sharing your story. Your excitement and enthusiasm for the experience shines through in your posts. Thank you again for your efforts and dedication to this cause.
Hugs,
DarlaWhat an incredible conference. As, Melinda stated, it was incredible to witness how many brilliant minds were in one room, working to find a CURE and to improve the care that cholangiocarcinoma patients receive to improve their quality of life. Melinda, you’re story was so moving and made such a huge statement, one that the professionals need to hear. Hugs.
I could not help but think back to when I attended my first conference with Marion and Stacy, back in 2008 in Orlando. I remember so many things about that conference. The past few days seeing the collaboration, sharing and understanding of the need for research and clinical trials for this disease, was totally energizing and rewarding. It is truly incredible how far this foundation has come, and it is due to the relentless work of Stacie, Marion, Donna, and the rest of the Board of Directors, as well as the volunteers and everyone else behind the scenes. I am honored and humbled to be a part of this foundation, it has become my passion and my mission. I am proud to do my small part to help raise awareness for those who are battling cholangiocarcinoma and also for their families.
The last night of the conference was very emotional as all of us volunteers sat around the table with Donna (Volunteers of the Round Table) and shared our stories of how we became involved. So many passionate people, everyone just wanting to make a difference in some way. It was wonderful to meet so many dedicated people.
Hugs to all from snowy New Hampshire,
BarbaraThank you Melinda, for representing our CC family. I know it must have been very exciting. With all of the loving support and hard work this Foundation takes on, we cannot help but win!
Oh my goodness!!! What an amazing conference! I was so in awe of all the brilliant minds in one room, I felt smarter for just being near them!! What HOPE!! It gave me so much hope for the future to see the enthusiasm and momentum created at this conference….to know that these brilliant minds are willing to put forth the effort to make a difference in research and treatment for all Cholangiocarcinoma patients!!
I was so happy to finally get to meet in person Marion, Stacie, Rick, and Donna. Thank you guys for all you do for all of us!! …..and of course all the volunteers that I didn’t even know were behind the scenes of this group…..Rob, Laurie, Meg, Marie, Karen, Heidi, Barbara, Linda, Lauren….I know there are so many more I am forgetting to name…..you are all so awesome!
The part that was very special to me was getting to know three people who were there searching for answers for someone they love…..a husband for his wife, a mother for her son, and a wife for her husband. Their stories, like all of ours, are so full of love, emotion and fight. I also was so humbled of the stories of the family members who have lost a loved one. Pretty much every volunteer there had lost someone they love to this disease. They are now wanting to carry on the memory, legacy and love for their lost loved one, by helping others. So selfless, caring and kind!! I was so honored to be able to hear their stories and get to know each of them.
It was a blessing to be able to tell my personal cc story at the conference. As scared as I was, and as much as I dislike public speaking, I would do it again in a heartbeat in order to bring hope to others and awareness to the public. It was extremely important to me to put a face and a family to the statistics and numbers. It is my hope that I represented all of the patients of Cholangiocarcinoma….I did my best to lay it all out there, the good, the bad and the ugly!!
I was also able to meet Helen from AMMF, wonderful lady!
Love and prayers to all,
MelindaThanks for the write up Marion, sounds like the conference went very well indeed!! My thanks of course go to all who were involved with it, thank you so much!
For those who are on Facebook, here are a few pic for you all!
Marion at the lectern giving her presentation.
Marion, Helen (AMMF) and our Stacie as well. So love this pic!
Sounds like the Annual Meeting went very well indeed and so looking forward to hearing more about it all.
Thanks and hugs to all,
Gavin
Thanks Marion for the update on the conference. I would like to add my thank you’s to Lainy’s to all those who participated. It sounds like the conference was a great success and a very positive, uplifting and supportive effort for all those involved and also for all of us who have been touched by this disease. It is good to know that out voices are being heard and that things have progressed so much in the effort to promote, treat & ultimately to find a cure for CC.
Hugs To All,
DarlaWOW! What a successful Conference! I want to thank everyone who took part and especially to you, Melinda and our Foundation. It must have been thrilling to meet Helen and I am very impressed by the Nursing Standard for CC that is being developed. Can you believe how far we have come in just a few short years? Words cannot thank all of you enough for all the work you have done, all the stress, sweat and tears are coming to fruition. Congratulations on a monumental job well done!
The Second Annual Cholangiocarcinoma Foundation Conference was a huge success.
I have come away with renewed energy and hope for a better world for all touched by this rare cancer. Physicians and researchers are collaborating, sharing information and data not only in the US but abroad as well by giving credence to the fact that we are confronted with a disease demanding global participation.
One of the most memorable highlights was the powerful presentation of our very own Melinda. Melinda, the patient, immersed the human side to a meeting of minds focused on clear, factual science. She represented the true meaning of what it is all about: Patients touched by the disease of Cholangiocarcinoma.
Sue Aquisto, co-founder of the Bili-Project Foundation, with support from our very own Heidi and Karen and other nursing professionals from various medical institutions, is in the process of developing and/or refining the Nursing Standard of Care for Cholangiocarcinoma patients. The ultimate hope is for world-wide adaption of this crucial and necessary nursing care manual.
Presentations focused on somatic mutation profiling, tumor profiling and investigational therapies, the BAP 1 mutations-spectrum and biology in cancer, targeting FGFR in cancer, IDH1 mutations, the potential of immunotherapy for solid tumors, chemoradiation for patients with Cholangiocarcinoma, tumor sequencing, Professor Bridgewater sharing his experience with the ABC research study, networking, question and answers periods and much, much more.
We were delighted and happy to finally have met in person Helen, founder of AMMF, UK. Not only have we renewed and strengthened our collaboration and commitment to this disease, but we had the opportunity to hug and lend support to each other as well.
Barbara, Linda and, Rob, our faithful and committed volunteers and advocates, as well as Mary, Meg, Marie and Laurie, CCF behind the scene support staff, manned the various information desks.
Most of Saturday was designated to the Board of Director’s Meeting focused on recapping the event and setting in place guidelines for follow-up.
Hugs and love to all,
Marion
P.S. More to come
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