Find news, events and updates on how the Emily Whitehead Foundation is activating the cure for childhood cancer. The Emily Whitehead Foundation is non-profit organization committed to raising funds to invest in the most promising pediatric cancer research, providing financial support to pediatric cancer patients, and raising awareness through education and sharing inspiring stories.
On Tuesday, February 12, Tom Whitehead traveled to Greensboro, NC to speak and share his story at Corning Life Sciences global sales meeting. Some of Corning’s products are used to train and grow T-cells for CAR-T cell therapy.
It was a very inspiring session, followed by a Q&A with Chris Mach, Corning’s Director of Cell and Gene Therapy Strategy.
In addition to the invitation to speak, Corning made a generous donation to the Emily Whitehead Foundation.
Thank you Corning for the opportunity to inspire your sales team and spread awareness!
During the week of January 22-24, 2019 we had the honor to attend the co-located Phacilitate Leaders World and World Stem Cell Summit 2019 conferences in Miami, Florida. There, we had the opportunity to attend many of the conference events, talks, and speaker series, and connect with new and familiar cell and gene therapy industry professionals.
On Tuesday, January 22, the opening night of the conference, Tom Whitehead joined Dr. Bruce Levine, Penn Medicine, and Dr. Anthony Davies, Dark Horse Consulting, in a fireside chat to kick off the pre-conference Super Plenary event. In a discussion led by Davies, Tom had the opportunity to inspire those in attendance with his story and share the Emily Whitehead Foundation’s mission to support further innovative pediatric cancer immunotherapy research.
The evening of Thursday, January 24, however, was the week’s greatest highlight when we had the honor to host a unique yacht party fundraiser in partnership with Phacilitate. With the combined proceeds collected through ticket sales and an on-board silent auction and casino play, the event raised a total $17,350 for the Emily Whitehead Foundation!
We had a lot of fun and Emily especially enjoyed the top deck entertainment and light-up glow sticks. This was the first year that the Phacilitate yacht party, which had existed in prior years as an exclusive conference networking event, was held in partnership with a charitable organization — and we are so blessed and thankful to have been invited to participate as the beneficiary.
Thank you Phacilitate Leaders World and World Stem Cell Summit for an incredible, inspiring week — with special thanks to all who joined us on the yacht, as well as anyone we had the pleasure to connect with throughout the conference.
A huge thank you also to the handful of volunteers who joined us, to Joe and Jamie Bartolo for handling the silent auction, and to the Phacilitate team for everything they did to make this fundraiser happen and be the great success that it was.
We look forward to the opportunity for further partnerships with Phacilitate and hope to return next year to experience and participate in Advanced Therapies Week 2020!
It has been four years to the date since we first launched the Emily Whitehead Foundation. With each anniversary, we like to reflect on the success of the past year, and thank every one of you for continuing to support us in our mission to Activate The Cure.
Additionally, we had the honor to contribute $125,000 to a Stand Up to Cancer Phillip A. Sharp Innovation in Collaboration Award. This grant has been used to support the research collaboration of Toronto scientist Trevor Pugh, PhD, and Children’s Hospital of Philadelphia (CHOP) pediatric oncologist David Barrett, MD, PhD, whose work includes studying the precision of pediatric cancer immunotherapy treatments. In this upcoming year, the Emily Whitehead Foundation will contribute an additional $125,000 toward a 2019 Sharp Award.
Also this year, we had the pleasure to open our first office headquarters in our hometown of Philipsburg, PA and celebrated raising over $1,000,000 since our launch in 2015. We also had the opportunity to travel and spread awareness around the U.S. as well as Sweden and Montreal, Canada.
In 2018, Team EWF raised over $30,000 combined by participating both the Pittsburgh and Philadelphia marathons. In four years, Team EWF has now raised over $200,000 for pediatric cancer research!
It’s been a great four years! Thank you to everyone who has supported us thus far in our journey, and to all the companies and organizations that have believed in us and invited us to travel to spread awareness and share our story.
We can’t wait to share with you all the exciting things to come as we enter into our fifth year!
Without the generosity of our many supporters, such great success in helping to fund CAR-T cell therapy research wouldn’t be possible. Please consider making a donation to EWF to help us continue the fight.
On January 3, 2019, we began the new year by joining members of our local community at the 4th Annual Take Down Cancer Event — a combined high school wrestling dual-meet and fundraising event between rival high schools Philipsburg-Osceola and Clearfield, benefitting the Emily Whitehead Foundation.
Thanks to the combined fundraising efforts of the P-O and Clearfield school districts, this year’s event once again raised thousands to help further childhood cancer research. During an intermission, Tom, Kari and Emily accepted a ceremonial check for $10,077 from the two schools. When combined with fundraising proceeds collected that night, this year’s Take Down Cancer event raised a total $11,205! In four years, the Take Down Cancer event has now raised more than $55,000 on behalf of the Emily Whitehead Foundation.
This years’s fundraising efforts included T-shirt sales, a bake sale, silent auction, Chinese auction, a lottery board drawing, and a 50/50 raffle. Additionally, the elementary schools in each district collected money throughout December to donate toward the event. Their efforts were beautifully displayed during the event when a handful of students carried a paper-link chain through the gymnasium, with each chain link representative of each dollar that was brought in by the elementary students, faculty and teachers.
As it has been in years prior, the gymnasium at the hosting Philipsburg-Osceola Area High School was packed. The wrestling match itself ended in a victory for the P-O Mounties, who won 53-19 over the visiting Clearfield Bisons.
While surrounded by so many of our friends, neighbors and members of our community, it was especially meaningful to also welcome CAR-T cell therapy hero Ayden Gora, his parents, and sister to this year’s event to tell their story and share with those gathered the impact that EWF and CAR-T cell therapy has had beyond Emily. Ayden, who also had the honor to throw the opening coin toss, was treated in the clinical trial at Children’s Hospital of Philadelphia and is now two years cancer free.
Thank you to the Philipsburg-Osceola and Clearfield school districts, wrestling clubs, volunteers and everyone who contributed to and participated in this 4th Annual Take Down Cancer Event — and special thanks to everyone in both communities for continuing to generously support EWF and our mission to help kids with cancer!
Blaise Alexander, Clearfield Elks-BPOE Lodge 540, Clearfield Moose, Jims Sports Center, JJ Powell, Denochick Logging and Clearing LLC, Drayer Physical Therapy, Moshannon Valley Am Vets Post 159, Philipsburg American Legion Post 437, Timothy E. Durant Attorney at Law, and T.L. Bainey, for sponsoring event T-shirts.
WTAJ-TV, WJAC-TV, The Progress, Gant Daily, Altoona Mirror, and Passport Radio 98.5 FM & 900 AM, for event coverage in the media.
Action Graphics, for sponsoring the check presentation.
Lansberry Trucking and Irwin Citgo, for sponsoring the live radio broadcast.
CNB Bank volunteers.
Nittany Lion Wrestling Club and State Farm, for auction basket donations.
In the two years since our paths first crossed, Nicole Gularte’s CAR-T journey has, in many ways, become an integral part of our own story – one that continues to inspire us to make a difference however we can.
Diagnosed with acute lymphoblastic leukemia (ALL) in October 2010, Nicole endured a number of relapses prior to becoming eligible to receive CAR-T cell therapy at University of Pennsylvania Medicine. Having learned about the success of the CAR-T cell therapy clinical trials at Penn and Children’s Hospital of Philadelphia (CHOP) through her extensive treatment research, Nicole traveled from her home in California to Philadelphia in August 2014 to meet with Dr. Carl June and his team and have her T-cells collected.
Feeling inspired and hopeful that this treatment would be the one that worked, Nicole returned to California to adjust her treatment plans and allow for another relapse to make her eligible for the trial. It wasn’t until April 2016 that she received the news that her cancer had returned — this time in her bone marrow and, unfortunately, her spinal fluid. The evidence of cancer in her spinal fluid (CNS) made her ineligible for the CAR-T trial at Penn, and it was soon after that Nicole made the decision to put a stop to further treatment and begin planning her own funeral.
When she first arrived in Philadelphia for her T-cell collection, Nicole had learned about Emily’s story. Seeking guidance following her decision to forego treatment, Nicole reached out to Tom Whitehead.
I told her that it was hard for me to explain, but just like when I knew Emily would survive her treatment, I had a very strong feeling that she would get her modified T-cells if she kept fighting. I explained to her that I have learned to pay attention to the whispers in my life and that if she would keep fighting we would do anything and everything to help her. [Read More – T-Cell Therapy Patient Story: Nicole Gularte]
When Nicole had her bone marrow and blood tested again, her CNS results came back clear of cancer — a miracle, as Nicole has called it. Now eligible, Nicole returned to Philadelphia to receive her modified T-cells and participate in the CTL019 clinical trial at Penn Medicine. Twenty-eight days later, Nicole was declared cancer free.
In the time that followed, Nicole became a friend and patient advocate on behalf of the Emily Whitehead Foundation, sharing her story at several events – including our inaugural Believe Ball in 2017.
However, in mid-September of this year, Nicole learned that her leukemia had returned for the eighth time.
The cancer had found a way to survive the CAR-T cell therapy administered in the CTL019 trial, which trained her T-cells to target a protein on her cancer identified as CD19. Facing a renewed fight, Nicole, now living in Philadelphia, turned again to the team at University of Pennsylvania.
As a relapse patient who had previously received the CART-19 therapy, Nicole was eligible to enter another clinical trial — this one seeking to train her T-cells to target CD22, another cancer cell protein that has shown promise in responding to targeted CAR-T cell therapy.
Nicole has chronicled her CART-22 journey on her blog, Fight For Cures. On November 2, 2018, Nicole became the very first patient in this brand new clinical trial at Penn Medicine, and on November 7, 2018, received the first of three CART-22 modified T-cell infusions.
While in Philadelphia for the Philadelphia Marathon, we had the opportunity to visit with Nicole. Her response to the treatment was similar to her experience the first time — high fevers and cytokine release syndrome (CRS), a common CAR-T therapy side effect, as her immune system responded to the treatment.
By Thanksgiving, Nicole was through the worst of the “storm” and feeling better. And on Thursday, December 13, 2018, the results of her Day 28 check up revealed that the treatment had worked – no evidence of cancer!
The hope is that this new, CART-22 clinical trial will continue to help patients such as Nicole, whose cancer survived even following remission from CART-19 — as well as any other patients whose cancer cells express the CD22 protein. In addition to University of Pennsylvania, this same clinical trial is also open and enrolling pediatric patients at Children’s Hospital of Philadelphia (CHOP).
Dr. Carl June, Dr. Bruce Levine, Nicole Gularte and her dog Bentley, Dr. Don Siegel (December 14, 2018 at Penn Medicine)
On Friday, Nicole shared the news with her friends, family, and followers on her blog:
“I thank those of you who prayed for me. I thank God for the answered prayers. And I thank the UPenn team (and many others) for their perseverance and dedication; as their hard work has created miracles.”
Over the weekend of November 17-18, we traveled to Philadelphia to support our team of runners participating in the 2018 Philadelphia Marathon.
For the fourth year in a row, the Emily Whitehead Foundation had the honor of being an official Philadelphia Marathon charity partner.
This year’s team has so far raised $21,000! In four years, Team EWF has now raised over $143,000 through Philadelphia Marathon fundraising efforts. When combined with funds raised during the spring’s Pittsburgh Marathon, Team EWF’s fundraising contributions now total $200,000!
Each marathon weekend we look forward to being inspired by the runners who choose to run on behalf of EWF. This year, 20 runners competed in the various marathon weekend events, including one who conquered the Liberty Challenge by running in the half marathon on Saturday and the full marathon on Sunday! This year’s team also included an inspiring mother and 11-year-old son duo, who ran together in the 8k.
Marathon coordinator Jodie Potter says of Team EWF: “It’s just impossible to express my pride in and gratitude toward them. EWF runners: you are changing the world for children and families affected by pediatric cancer! Thanks just doesn’t cover it.”
THANK YOU TEAM EWF! We appreciate each runner, supporter and volunteer for taking great strides toward activating the cure for all children fighting cancer.
Our Philadelphia Marathon fundraising window will remain open until November 30, 2018. Help our team reach their fundraising goals by visiting crowdrise.com/ewfphilly2018!
Interested in joining Team EWF?
Registration for the Pittsburgh Marathon in May 2019 is now open! Runners can fundraise for EWF and run for free, or if already registered, can join the team and fundraise with no fundraising minimum.
Registration information for the 2019 Philadelphia Marathon will be announced through EWF social media when available.
PHILIPSBURG, Pa. (Nov. 20, 2018) – In an effort to bring more awareness to pediatric cancer immunotherapy research, the Emily Whitehead Foundationand London-based Phacilitate are joining together to hold a one of a kind fundraising event in Miami, Florida on January 24, 2019. The exclusive event will take place during Phacilitate Leaders World iconic yacht party, and will attract international immuno-oncology and cell and gene therapy industry leaders.
“We are pleased to support the Emily Whitehead Foundation, a prominent leader in pediatric cancer immunotherapy research. We hope that in doing so, awareness will be brought to the cause,” said Michael Adeniya, Director of Advanced Therapies at Phacilitate.
“It is an honor to have Phacilitate recognize the Emily Whitehead Foundation as a leading foundation for pediatric cancer immunotherapy,” says Tom Whitehead, co-founder of the Emily Whitehead Foundation. “We hope this fundraiser is just the start to our collaboration with the Phacilitate team, as well as the mark of a new chapter for EWF as an internationally recognized pediatric cancer foundation.”
Since being launched in 2015, the Emily Whitehead Foundation has been committed to increasing awareness for and supporting further research and development of pediatric cancer immunotherapy treatments. To date, the Emily Whitehead Foundation has raised over $1 million and funded several grants for advanced CAR-T cell therapy research.
“The money that gets raised by the Emily Whitehead Foundation goes where the donors expect it to—to help further the development of cancer treatments that are less toxic and have less long-term, negative side effects,” says Whitehead. “Our goal for this fundraiser is, as it always is, to raise funds for more research. We want to help make it possible for kids all over the world to have access to life-saving immunotherapy treatments.”
The Emily Whitehead Foundation will receive $50 of every ticket sold to the yacht fundraiser. In addition, attendees will have opportunities to donate and participate in a silent auction on board.
The Emily Whitehead Foundation is a 501(c)(3) nonprofit organization that raises awareness and funds for childhood cancer research. Emily Whitehead is a three-time cancer survivor and was the first child in the world to receive CAR-T cell therapy, a form of immunotherapy. Emily is now five years cancer-free. Since 2015, the Emily Whitehead Foundation has supported research funding to develop innovative and less toxic treatments, such as immunotherapy, for pediatric cancer patients. For more information, visit www.EmilyWhiteheadFoundation.org.
Phacilitate believes in the power of partnerships and that through collaboration, anything can be achieved. By fostering the community and bringing together a diverse range of expertise from across the advanced therapies ecosystem, Phacilitate is creating a network of partnerships that brings the industry closer to achieving the ultimate goal of improving patient care and developing commercially viable curative treatments. This is the future of healthcare. Phacilitate unites people through award-winning events, which focus on the business and the science of advanced therapies, creating unforgettable experiences and memories to connect and inspire. Phacilitate Leaders World, Phacilitate Leaders Europe and Advanced Cell Therapy Shanghai Summit are the pillars of the calendar and bring together the entire advanced therapies ecosystem. For more information about Phacilitate, please visit: phacilitate.co.uk.
Howard R. Miller
Howard R. Miller Communications
Emily Whitehead Foundation
On Thursday, November 8 we had the honor of traveling to Montreal, Canada to attend a town hall meeting and inspire Novartis Canada employees.
There, we were joined by Children’s Hospital of Philadelphia’s (CHOP) Dr. Stephan Grupp and the Lahti family, whose son Cameron received CAR-T cell therapy at CHOP in July 2016.
In September of this year, Canada joined the European Union and United States in granting Novartis CAR-T cell therapy Kymriah (tisagenlecleucel/ CTL019) regulatory approval for pediatric and young adult patients with relapsed/refractory B-cell acute lymphoblastic leukemia (ALL) and adult patients with relapsed/refractory non-Hodgkin’s lymphoma (DLBCL).
This treatment is the same that Emily and Cameron were fortunate to receive in the CTL019 clinical trials at CHOP. We continue to be very thankful that many more children and adults around the world will now have the opportunity to receive this therapy as well.
We enjoyed the trip and are very thankful for the opportunity to inspire Novartis Canada with our story! It is our hope that our travels continue to spread awareness and lead more people to find hope in new and innovative cancer immunotherapy treatments.
On Friday, September 7 we traveled to Los Angeles to attend the sixth annual Stand Up To Cancer telecast. It was a true honor to be invited to join our friends at SU2C in celebrating ten years of making an impact!
Prior to attending the show, Emily walked the red carpet with fellow cancer survivors and CAR-T cell therapy patients Nick Wilkins and Emily Hunt. Nick and Emily were also among the first patients treated in the CTL019 clinical trial at Children’s Hospital of Philadelphia (CHOP).
In a special moment during the telecast, Emily and Nick were given the opportunity to thank the doctors and researchers who treated them. Watch their touching shout outs here.
“Thank you, Dr. June, Dr. Grupp, and all of the Dream Teams. The early days were scary and I don’t remember a lot, but now I’m okay.”