Our Looseleaf Notebook
An Important FREE Webinar: “Update on Cholangiocarcinoma: What we have learned from the International Hepatobilliary Neoplasia Biorepository”
When: Monday, July 14, 2014 4:00-5:00 PM (EST)
Presenter: Dr. Roongruedee Chaiteerakij, Mayo Clinic, MN
Purpose: Educate patients, supporters and caregivers to understand how Mayo Clinic is using the information and bio-specimens provided to improve care all for cholangiocarcinoma patients.
How to register: https://www1.gotomeeting.com/register/373138793
More details attached to link below! Join Us!!!! Share with others!!!
Webinar: Update on Cholangiocarcinoma – What we have learned from the International Hepatobiliary Neoplasia Biorepository
Topic: “Update on Cholangiocarcinoma: What we have learned from the International Hepatobiliary Neoplasia Biorepository”
Presenter: Dr. Roongruedee Chaiteerakij, Mayo Clinic, MN
Purpose: Educate patients so they better understand how Mayo Clinic is using the information and bio-specimens they provide to improve care all for cholangiocarcinoma patients.
Download the Powerpoint Presentation
For those of you in the Sonoma, CA area, please consider attending “The 2014 Sonoma Bili Project Experience” on August 2nd hosted by The Bili Project Foundation. The event hosted by Cedric the Entertainer includes dinner, live and silent auctions, and celebrity golf foursomes. Proceeds benefit the UCSF Hepatobiliary Tissue Bank. For more information, contact Melissa Searle at firstname.lastname@example.org.
Cholangiocarcinoma patient, Valarie Spiser-Albert beat the odds with her positive attitude
Three years ago, Valarie Spiser-Albert was diagnosed with cholangiocarcinoma. She was told she had 6-8 months to live but her with her positive attitude, she beat the odds! Check out her story and video. Thanks for KSAT TV for sharing this inspirational story.
The International Cholangiocarcinoma Patient Registry (ICPR) will open this Friday, June 27 at noon (Eastern). The ICPR will advance Collaboration, Understanding, Research and Education for this rare disease. If 100 people register in the first 60 hours, CCF will receive a $500 donation.
Who was Jo Bryant?
Jo Bryant was a healthy, working teacher and a very involved mother and grandmother when she went to the doctor for back pain. (She taught for 43 years, up until the day she was hospitalized.) After tests and a biopsy, a week later, she was diagnosed with cholangiocarcinoma. Her health quickly deteriorated. She died three weeks after her diagnosis, on the way to a doctor appointment. Her sudden death was so shocking to her family, friends, and students. My sister and I (Julia & Kate) started the Jo Bryant Memorial Foundation shortly after her death to raise awareness and funds for CC.
Who, what, where, when & why the event is held
The Journey for Jo 5K Run/Walk & Kids Dash is held annually in Topeka, KS, where Jo lived and worked. This year’s event was held on May 31, 2014 at Lake Shawnee. The event is held to raise money and awareness for cholangiocarcinoma. It’s also a means for supporting those that are fighting CC and those that have lost loved ones. We’ve been surprised how many people have been impacted by this “rare” disease, just in NE Kansas.
How many years you have held the event?
2, with plans to continue annually
What is the total amount raised to-date?
How many people participated in 2014?
Forty years after becoming a father for the first time, six children and thirteen grandchildren later, the question has to be; how has my life been changed through all these years in the role of dad and grandpa? The simple answer…I can’t possibly fathom how different my life would have been without the children. Being a dad is fulfilling, meaningful, joyful, gratifying, significant, prideful, humanizing, and humbling. Paradoxically, it is also frustrating, stressful, vexing, fearful, exasperating, exhausting, costly, and certainly not something to enter into lightly. The decision to become a dad is forever…once a dad you can’t ever walk away and shed the responsibility…(well, perhaps in very short moments). Children are not our possessions with built-in obsolescence. When we make the commitment to becoming a dad, it is like no other commitment we will ever make in our life…we can’t negotiate, rationalize our way out of it, or walk away when the contract is finished and pick a new provider. At times we don’t particular like their behaviors. Conversely, they don’t always like our behaviors either. But, we will always love them…no matter what. The love and relationship with our children is unique and like no other in our life.
My commitment to being a father is deeply engrained within my soul. My dad died suddenly when I was nine months old, leaving my mother widowed with three young children to deal with on her own. I have known what it is to not have a dad in my life and will always have sadness about it, but I also developed distinctions from being raised by my mom and grandmother, which has contributed to my way of being a father. We strive to be the perfect father, but we are human and we make mistakes. We stumble, we cry, we have breakdowns at times, we experience consequences for our decisions, but we also get back up every morning, get the kids off to school and face the world again, a powerful metaphor for many circumstances in our life. A true gift we can give our children is allowing them to be human. Embracing my own “humanness” allowed me the empathy to embrace the humanness of my children. We can be mentors, teachers, family leaders, influencers, “life coaches”, and providers of structural tools allowing them to make decisions, (with guidance and counsel), and then being responsible for the consequences of their decisions, both good and not so good sometimes. They learn as much or more from our behaviors, as from what comes out of our mouths. They are emotional sponges and emulators. And what we put out there is reflected back. They teach us and bring us humility. Titles and successes in our careers dissolve in an instant when we walk through the door of our homes. We “have” numerous things in our lives, but being a dad/father/grandfather is a “way of being”…it is cellular. Perhaps it really should be “children’s day” in honor of our children.