• YOU DID IT!
  • SUPPORT GROUPS
  • VOLUNTEER OF THE MONTH
  • TEAMCCF UPDATE

  • 15TH ANNIVERSARY HAPPENINGS
  • CCF AWARENESS STORE
  • VOLUNTEER OPPORTUNITIES
  • UPCOMING EVENTS
YOU DID IT!
Annual Conference by the Numbers
Two Mark R. Clements Award Recipients
Dr. Renuka Iyer and Lisa Craine
Mark R. Clements Award for Vision, Innovation and Collaboration
Mark R. Clements Award for Excellence in Volunteerism
The Mark R. Clements Award is the highest honor awarded by CCF each year. As a CCA patient himself, Mark Clements was truly the inspiration and driving force behind this foundation's creation. Before Mark passed, his wish was to create something that could help others have the kind of support he did. This award reflects the umbrella of hope that covers this community.
Congratulations to the 106 volunteers who received Gold, Silver and Bronze recognition for their volunteer contributions during 2020!
SUPPORT GROUPS
May Schedule for
Patient Support Groups,
Caregiver Support Groups,
and Educational Webinars
2:00 pm MST, on Thursdays

May 13th - Radiation Therapy by Dr. Eugene Koay, MD Anderson Cancer Center
May 27th - Industry Relations

Registration is free but required. Visit cholangiocarcinoma.org/calendar to see all the additional May events and links to get involved.
Note: This is a great resource for CholangioConnect Mentors to share with either the newly diagnosed or any new mentees.
VOLUNTEER OF THE MONTH
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.
Toni Pham
Toni works to shine a light on cholangiocarcinoma as a Research Advocate and a CholangioConnect Mentor.
Toni Pham is the middle child in a close-knit family. She was born in Vietnam and came to the United States at the age of two. After touring the states, her father purchased a business in Houston, Texas, and it has felt like home to Toni ever since. She graduated from law school after a stint in Syracuse, NY, from Southern Methodist in Dallas. Her family has faced a lot of adversity, yet she grew up knowing service was always important as her parents prioritized it.

Toni's sister, Nicole, was diagnosed with cholangiocarcinoma in early 2018. Nicole had always been extremely healthy and never missed school, so it was a complete surprise for her to begin having severe abdominal pain. That pain and radiating back pain sent her to the local hospital, where she learned she had a common bile duct obstruction. After a CT was ordered, the doctor shared it 'could be cancer, but probably not.' MRCP and ERCP procedures followed, and Toni knew that Nicole needed a cancer center despite no one ever mentioning the word cancer or cholangiocarcinoma. Immediately Toni told Nicole it was her job to rest and heal while Toni dug into all things advocacy and researched treatments. She worked to gather Nicole's medical records, sought second opinions, scheduled appointments, investigated clinical trials, and even traveled out of state to a medical conference to learn about treatment options and meet a physician in person. Contacts at that medical conference introduced her to Melinda Bachini, Director of Advocacy, which gave Toni some hope. Toni continued to leave no stone unturned. She compiled research about every clinical trial option and created spreadsheets to help Nicole make the very best and informed treatment plan. Nicole eventually enrolled in a clinical trial as the first cholangiocarcinoma patient. 

Shortly after Nicole's diagnosis, Toni met other caregivers on Facebook. She became friends with many. She began helping other families that traveled to MD Anderson from out of town. Toni had planned to attend CCF's Annual Conference with Nicole in 2019, but she lost her sister before the event arrived. 'Attending was the best thing I ever did for myself,' says Toni. She bravely attended and shared how much it helped her through her grief and considered it excellent therapy.

Toni loves the scientific presentations at the Annual Conference and has a knack for understanding the science, the labs, metabolic pathways and can spot issues/trends quickly. She shares her research freely while volunteering as a Research Advocate and Caregiver Mentor. Toni has served on multiple patient advisory boards. She enjoys helping families take the very best questions to their medical providers and is happy to gather research as new data is published. She is an incredible advocate of genomic testing, as Nicole's genomic test was authorized and signed for but never ordered and completed. Toni works to ensure that does not happen for others. She will soon present on a clinical practice guideline panel for the American Society of Gastrointestinal Endoscopy, hoping to improve the ERCP. Toni shares that she has made many new friends since her volunteer work began and considers her time with them the highlight of any day she gets to serve. It is a great honor and privilege to recognize Toni Pham as Volunteer of the Month.
TEAM CCF UPDATE
We are excited to announce the members of TeamCCF Bank of America Chicago Marathon who will complete 26.2 miles on October 10, 2021:
Congratulations!
Gabe Bluestone, D.C. 

Nick Cohen, Chicago, IL 

Bethany Crispin, Lemont, IL  

Kirstin Erni, Chicago, IL

Molly Henderson, Roswell, GA
Myria Kelly, Joliet, IL 

Brian Marshall, Oak Park, IL

Taylor Matonak, Myrtle Beach, SC
Delorean Ostrom, Suwanee, GA 

Samantha Pear, Anthem, AZ
Sarah Pomponi, Munster, IN 

Dan Tardiff, Elmhurst, IL

Jessica Thomas, Aurora, IL

Isabella Vonachen, Peoria Heights, IL
Whitney Whitehouse, Dallas, TX
Thank you for joining our team and we can't wait to see you run in October!
SAVE THE DATE!
Moving for the Cure

Save the date for the 2nd Annual Moving for the Cure! Registration will open at the end of April. Sign up as an individual or as a team.

Choose any activity and complete it the week of July 18th.

Each participant will receive a shirt and bib. Don't miss this fun event!
15TH ANNIVERSARY HAPPENINGS
"What's Your 15?" Challenge
In commemorating CCF's 15th anniversary, CCF pauses to reflect on its beginnings, celebrates the growth, and focuses on the need to create improved research in finding a cure. CCF recently introduced year-long activities and goals in honor of its anniversary. In 2021, CCF will work to fundraise an additional $150,000, specifically for research. You are invited to join us by texting CCFturns15 to 41444. CCF has big goals for 2021, together we know it is possible!
May's Challenge
#CCFturns15

In light of the 15th year anniversary, CCF plans to celebrate while giving back, particularly with the number 15 in mind. This month we invite you to participate in 15 acts of kindness.

Your voice builds the momentum. Use #CCFturns15 to share how you are spreading kindness.

Click on the Pay It Forward cards below to print your own cards to use all month long.
Watch the video below to learn more about the May challenge.
CCF AWARENESS STORE
NEW ITEMS
Mother's Day is Sunday, May 9th.

Use the promotional code LOVEMOM
April 27th - May 2
20% off any store item

The store has wonderful gifts for mom including necklaces, bracelets, earrings, and clothing. The Awareness Store just added TeamCCF tank tops for men and women, a TeamCCF athletic hoodie, phone stands, and comfortable chemo shirts for men and women. 
VOLUNTEER OPPORTUNITIES
Example Bundle of Hope with a New Hampshire theme.
15th Anniversary Auction Committee Volunteers

CCF is seeking volunteers to plan two live online events and gather donated items for the online fundraising auction events scheduled for September/October 2021. Work to create a historic event and raise $150,000 for research.

Email cindy.thomas@cholangiocarcinoma.org to participate in any of the above volunteer work.
15th Anniversary Bundle of Hope
Volunteers

CCF is seeking donations for Bundles of Hope. These bundles will be part of an online auction that begins Sept 18th - Oct 2nd. Your donation can help us raise $150,000 for critically needed research!
Bundles of Hope can be themed boxes such as Game Night, Chocolate Lover, or Outdoor Enthusiast. Learn more here to get involved.
UPCOMING EVENTS
SAVE THE DATE
Quack Out Cholangio
May 15, 2021
Join the 5K Run or 5K walk. There is even a virtual option. T-shirts included with registration fee, plus awards, raffles, and food trucks.
Cholangiocarcinoma Foundation | (888) 936-6731 | info@cholangiocarcinoma.org | cholangiocarcinoma.org