Today, we celebrate our third anniversary since launching on January 27, 2015! This third year has been our most exciting yet, and we’re reflecting back on each highlight and accomplishment.
In early February 2017, Emily made a special announcement, unveiling our plans to host the first Emily Whitehead Foundation Believe Ball — an event that had been on our dream board since our founding. With the help of a team of dedicated volunteers, we spent the following months planning every detail of the gala, including the theme: Write A Better Story.
This inspired a new campaign that coincided with our mission to Activate The Cure. With the Believe Ball, our goal became to Write A Better Story for children fighting cancer, a story that results in patients receiving more targeted and less toxic treatments, such as CAR-T cell therapy.
On October 28, 2017, our dream became reality when CAR-T cell therapy patients, their families, the doctors and researchers who worked to develop the treatment, and Foundation supporters all joined us for an evening that can only be described as magical. The event was the largest gathering of patients treated with CAR-T cell therapy to date and raised $450,000!
5 Years Cancer Free
While the month of May is special each year, May 2017 held extra significance. After turning 12 years old at the start of the month, Emily celebrated 5 years cancer free on May 10, 2017 — a milestone anniversary, often considered the threshold for being declared cured.
[Read: Celebrating 5 Years Cancer Free!]
FDA Approval of CAR-T
On July 12, 2017, we traveled to Washington D.C. to attend the FDA’s Oncologic Drugs Advisory Committee hearing for Novartis’s CAR-T cell treatment CTL019 for children with relapsed/refractory acute lymphoblastic leukemia—the very treatment that Emily was the first to receive in the clinical trial at Children’s Hospital of Philadelphia just five years prior. Tom was selected to speak before the advisory committee and advocate for the treatment’s approval, an honor he shared with fellow CAR-T parents Don McMahon and Amy Kappen. Moments after Tom spoke, the committee put the decision to a vote: 10-0, unanimously in favor of the pending approval.
On August 30, 2017, the decision to approve the treatment was confirmed and CTL019 (now Kymriah) became the first gene cell therapy to be approved by the U.S. FDA — also a milestone achievement for pediatric cancer, as one of only three instances where a treatment was approved for children before adults.
Other notable highlights:
- In February, two local high school wrestling teams, Clearfield and Philipsburg-Osceola, raised more than $13.5k at the second annual Take Down Cancer event benefitting EWF.
- The Emily Whitehead Foundation was nominated for Life Sciences Pennsylvania’s 2016 Patient Impact Award. We attended LSPA’s Annual Dinner on March 9, 2017 and, despite being a runner up for the award, had a great evening joined by our team of Believe Ball volunteers.
- In March, we ran 3.14 miles toward pie at the finish line in the Pi Day 5k Run/Walk benefitting EWF, joined by virtual runners participating from across the U.S.
- In the first weekend of May, Team EWF took on the Pittsburgh Marathon and raised more than $20k with their combined fundraising efforts.
- Just in time for Mother’s Day, Kari was nominated for Modern Hero by Emily.
- On July 14, 2017, two days following the historic FDA advisory committee meeting, we held the third annual “Tee Off for T-Cells” golf tournament in our hometown of Philipsburg, hosted once again by Oakland Raiders long snapper Jon Condo. The tournament raised more than $58,000. [Read: 3rd Annual “Tee Off for T-Cells” Golf Tournament Raises Over $58,000]
- In August, the local UMI Performance Cruise In & Autocross event raised $2,500 in benefit of EWF.
- In September, we traveled to Switzerland and attended the Novartis Leadership Forum.
- We hosted a silent auction at the 3rd Annual CAR-TCR Summit in Boston on September 6–7, 2017. At the end of the two day conference, a total $6,000 was raised for the Emily Whitehead Foundation.
- In November, Team EWF participated in the Philadelphia Marathon and raised more than $34k — including a check presented to Emily by board member Tom Garret, raised in part at the 6th Annual Blood, Sweat and Tears 5-Miler earlier that month.
- Emily was named one of Nature’s 10 People Who Mattered in 2017. [Read: Emily Whitehead Named One of Nature’s 10 People Who Mattered In Science This Year]
Thank you also to the following events for inviting us to attend:
NYC Hope Gala, AACR Annual Meeting, Immuno-Oncology Summit, Atlantic Live: Children & Cancer, Washington Post: Chasing Cancer
Thank you to all who contributed to making our third year such a success. We look forward to entering our fourth year by continuing to advocate for better treatment options for children with cancer, following our missions to Activate The Cure and Write A Better Story!