- VOLUNTEER OF THE MONTH
- YOU DID IT!
- TEAM CCF UPDATE
- AWARENESS STORE
- VOLUNTEERS NEEDED
- UPCOMING EVENTS
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Each month we will recognize those whose contributions inspire us and who demonstrate excellence in their service to others. This award was created to thank those outstanding individuals and to bring to light the immense efforts, time and resources that are generously given to the Foundation.
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Susan Braden may have thought that she wrapped up her vocal education career with hundreds of high schoolers nearly two years ago, but she has since discovered how to use her many creative talents in an innovative way, and all while on her cholangiocarcinoma journey. Susan has a delightfully creative mind and has written and performs a one-woman show called "Because I Can, Sir”- a Metastatic Musical Comedy. She has performed her show over 25 times, each with an incredibly warm reception. She is a cancer warrior with an arsenal of music, comedy, chemotherapy and faith. Susan encourages others to use laughter as a daily medicine and to live each day without fear - inside and outside of her performances.
In 2015 Susan seemed to be suffering from what she thought was a gallbladder attack, and instead, surgery was soon proposed
within the week
for a liver resection due to cancer. Upon her husband’s recommendation, they sought a second opinion preceding the surgery. After consulting with specialists, she knew surgery was not the best option, and her first treatment became a clinical trial.
Susan has never shown "no evidence of disease" (NED), the cancer is still active, but Susan shares that she is grateful for an oncology team that is “constantly studying my case and always a step ahead.”
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From left to right, Elaine Samolytz, Darrell & Bernice Baltzer, Marcia Van Gorden and Caitlin Fortuna (smiling for a selfie) at dinner.
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Minneapolis Meetup
Written by Marcia Van Gorden
As the "instigator" who 11 years ago blissfully started getting mothers of active-duty Marines and eventually Marine vets to meet together to share experiences, information, and to just be with others "who get it", I'm doing it again thanks to CCF. At the last annual conference, I met Caitlin Fortuna and her youngest daughter. Caitlin's mom had died in August 2018 after an 8 1/2 month battle. Caitlin's now 27 and her siblings are 25 and 23. They reminded me of my four kids who lost their dad at about the same age.
Caitlin and I struck up a friendship and a couple of months ago she mentioned to me, and a few other friends, that her family was coming to Minneapolis while her husband attended a convention for architects. We decided to meet up, and I put out the basic info out on some FB groups to anyone who was a caregiver or patient here in the Upper Midwest. We'd hoped that sometime we could join with our Wisconsin and Toronto friends that we'd also met at the conference.
Finally last night, Caitlin and I met with three other Twin Citians for the first monthly meetup. Bernice and Darrell Baltzer, as well as Elaine Samolytz rounded out the party and became our newest friends. Everyone agreed that there was something special and important to having face-to-face gatherings that don't quite happen to such a degree with only electronic relationships.
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Patient volunteer, Heidi Rhea, planned an Oktoberfest event in Covington, LA to support the CCF. Her family friendly event included live German music, dancing, food and drink, activities for children, etched mugs, handmade flower headbands and more! She even organized media coverage to promote the event. Heidi had over 1,200 people attending and has already booked Oktoberfest 2020.
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Heidi, and friends, kick off the activities.
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Live music to enjoy at Oktoberfest 2019.
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Heidi's grandchildren, in their dirndls and lederhosen, promote the event on Fox 8 Live Morning Show.
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Oktoberfest 2019 attendees at the Covington Trailhead on September 21, 2019.
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Christopher Wampler first ran for TeamCCF when he participated in the Charlottesville Fall Classic Half Marathon. Wampler ran in honor of his mom, Phyllis, who was diagnosed with intrahepatic cholangiocarcinoma in February 2017 and passed away a few months later on July 30, 2017. Wampler raised $1,875 in his first half marathon with TeamCCF and hopes to raise $2,000 in this year's race which he will complete on Sunday, October 13th.
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Christopher and his mom, Phyllis.
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Cholangiocarcinoma Warrior, Phyllis Wampler.
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October is a busy month for TeamCCF. Eighteen runners will compete in the Chicago Marathon. Our biggest team yet! We also have two single organizer or supporter (SOS) runners. One runner is competing in the Charlottesville Fall Classic Half Marathon and another in the 5th Annual Ocean State Rhode Races. Collectively, these team members have raised over $36,000!
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Team CCF is looking to recruit runners for our upcoming Fall races.
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Sale pricing on beanies, blankets, coffee mugs, hats and more! Up to 20% OFF on selected items. No coupon code needed.
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Wikipedia Content Creator
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The CCF is looking for a volunteer with extensive knowledge of Wikipedia in order to create a page for the Foundation.
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October 1st is #RareCancerDay
Genetic testing is critical for diagnosing rare diseases, but rare cancers are different! Molecular profiling testing can identify possible treatments in rare cancers, but often isn’t offered or covered by insurance. Spread the word for #RareCancerDay!
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This is a great opportunity to let others living with a rare cancer know they are not alone and to educate the world about cholangiocarcinoma. The official awareness day hashtag is #RareCancerDay. Please use this hashtag in all of your posts before and during the day in an effort to create one centralized conversation. Feel free to tag NORD in your posts using the profiles below:
Facebook: @NationalOrganizationforRareDisorders
Twitter: @RareDiseases
LinkedIn: @NationalOrganizationforRareDisorders
Instagram: @nord_rare
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