The Emily Whitehead Foundation

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Kari, Emily and Tom at the NYC Gala, 2015


A GIFT OF INSPIRATION

The Emily Whitehead Foundation (EWF) is a nonprofit company organized by Tom and Kari Whitehead on behalf of the treatment that their daughter, Emily, received in 2012.  Emily is the first pediatric patient to receive CAR T-cell therapy.  The foundation’s purpose is to raise money and awareness for childhood cancers and cancer research.  I was first diagnosed with children’s Acute Lymphoblastic Leukemia in 2010.  Facing more relapses and less options, I began to research T-cell therapy.  Emily has been my hero for nearly three years – since I first watched her T-cell story in the YouTube video, Fire with Fire, by Ross Kauffman.  Her story has kept me inspired and has given me the courage to keep fighting for T-cell therapy and awareness.  


CHALLENGES

During my struggle to gain access to CAR T-cell therapy at The University of Pennsylvania, I faced several problems that included:

  • Disqualification from the study
  • Discouragement and loss of hope
  • Loss of travel funds

FIRST CONNECTION

I first reached out to Tom in July 2016, in an effort to obtain guidance from an expert in patient care and advocacy with T-cell therapy.  Although I qualified for the CAR T-cell trial in April 2016, I experienced a relapse in the central nervous system (CNS) which immediately disqualified me from the study.  After six years of battling ALL coupled with another relapse, I began to lose hope.  I chose to reach out to the EWF, because I knew Tom and Kari Whitehead would have a great deal of knowledge and experience in T-cell therapy and patient advocacy.


SUPPORT PROVIDED 

  • Reliable source of contact
  • Patient advocacy
  • Prayer
  • Assistance with travel arrangements

SHARING AND CARING

In early August, I explained to Tom that I no longer qualified for the trial, and that I was tired of fighting.  I stopped all treatments and a Stanford pallative care team had given me three to five weeks to live.  Tom told me not to give up and said that things would fall into place.  He assured me that he and the EWF would continue to help get me out to Philadelphia for treatment. His words eased my fears and frustration.  He helped me regain focus and get back on track in my efforts.  The EWF community added me to prayer lists, while Tom made dozens of phone calls in an attempt to get me out to Philadelphia.  Tom advocated on my behalf, stood up for my rights, and encouraged me to reach out to others who once faced similar situations.

After a trip back to Stanford per Tom’s recommendation, doctors confirmed a miracle – my blood looked normal and my spinal resutls showed no leukemia cells in the CNS.  At this point I had not received chemotherapy or blood transfusions for several weeks, so it is very unusual that my labs would look so good.  This meant that I qualified for the T-cell therapy trial.  Tom immediately put me in contact with someone who quickly arranged flights for me and a friend.


OUTCOME

  • Received T-cells
  • Cancer free
  • Future advocate

WITH GRATTITUDE

I am most grateful to the Whiteheads for coming into my life during my time of need.  The EWF community restored the hope I once lost and they showed me what it was like to believe all over again.  The Whiteheads were instrumental in getting me out to Philadelphia for the CAR T-cell treatment.  The EWF’s  community had a major impact throughout my CAR T-cell journey at The University of Pennsylvania.  If not for them, I would not have received my treatment.


ABOUT THE EWF 

The EWF has created a vast community – connecting patients, parents, fighters, survivors, and supporters who help patients and families involved with T-cell therapy.  The foundation has a team of individuals who have come together to help inspire and create a brighter future for children, patients, and families.

SUPPORT FOR OTHERS

The EWF offers an array of services that can benefit patients and families who need help with:

  • T-cell therapy information
  • Sharing experiences
  • Encouragement
  • Community support
  • Awareness
  • Patient advocacy
  • Resources
  • Cancer research

HOW TO HELP

The Emily Whitehead Foundation is dedicated to raising awareness and funds for T-cell related therapy.  You can help by participating in a fundraising event or by donating.  For more information, you can visit the EWF’s website:

The Emily Whitehead Foundation 

OTHER RESOURCES

See T-cells in action!

Fire With Fire Video with Dr. Carl June

Follow Nicole and other patients journeys:

Fighting Fire with Fire – Nicole’s Journey U Penn


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Fighting For A Cure: A Friends Perspective

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Kelly Marie Schwerin has been one of many friends who witnessed the chaos, struggle, and perseverance throughout my six year battle.  When I returned from Philadelphia from my CAR T Cell journey, it was Kellys birthday.  On October 26, 2016 this is what she wrote:

You touched down at the airport last night as the clock ticked my birthday. I can’t help but imagine how YOU are actually the Birthday Girl. I’ll GLADLY share October 5th with you. For on your fight for a cure, THIS is the day you return to your home in California. After multiple medical ‘death sentences’, you have been released from your struggle by diligent, unrelenting, Science. YOU made this happen. YOU fought for your place in this world. You never wavered. You never gave up hope. You DEMANDED your right to access CarT-Cell therapy, and you will now be the case study for the expansion of that study. You didn’t just save your own live. You created an entirely new group of standards for future participants. Yes, you fight for the cure on a large scale. But your individual fight for YOUR CURE has opened the door for countless others. YOU took one HUGE GAMBLE. You turned down a perfect bone marrow transplant match. You did it because you believed in what they were doing in Philadelphia. You took the ULTIMATE leap of faith. And in doing so, you have opened the door to save countless lives beyond your own. So I am BEYOND proud to share this day, my birthday, with you. In fact, I’m lucky in that YOU share it with me. I love you.        

 

Miracles at Penn Medicine

I completed my CAR T Cell Treatment on October 4th 2016 and five days later I was declared cancer free!  In fact, my tests showed I am in the deepest remission possible.

I was the first adult to turn down a 10/10 bone marrow transplant so I could allow myself to relapse, thus qualifying for the trial. It was a tough battle to get into the trial at Penn due to active CNS involvement for over two years, but I fought hard and in every possible way.  My efforts paid off because I will be giving a speech for The Parker Foundation at UPENN on October 25th, 2016!

I have photos with Carl June, Bruce Levine, and Don Siegle below.  I’m looking forward to speaking at the event!  I will have an update ASAP!

[Photo:  Myself, Dr. Bruce Levine, and , Dr. Don L Siegel. This was my first day of T cell transfusion].

[Photo: myself and Dr. Don Siegel. Photo was taken in their new lab which is also where Joe Biden had his photo taken for the cancer moonshot]

[Photo:  Dr. Carl June, myself, and Dr. Don Siegel.  Map behind us says, “Where in the World Is Carl June”]