The Emily Whitehead Foundation Launch!

We are thrilled to announce that we have created a non-profit organization – the Emily Whitehead Foundation! The official press release is below or visit the official foundation page!
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The Emily Whitehead Foundation Launches to Support Pediatric Cancer Research

The Emily Whitehead Foundation is a non-profit organization committed to raising funds to invest in the most promising pediatric cancer research. The foundation also hopes to provide support to pediatric cancer patients and will promote awareness of the disease through education and sharing inspiring stories.

Philipsburg, PA (January 27, 2015) – Nearly three years after being the first child in the world to receive an experimental T-cell therapy at Children’s Hospital of Philadelphia (CHOP) to save her from a life-threatening cancer, nine-year-old Emily Whitehead and her parents launch the Emily Whitehead Foundation.

The non-profit foundation aims to direct funding to medical researchers to develop better treatment options and ultimately a cure for pediatric cancer. The foundation will promote pediatric cancer awareness and hopes to provide support for families facing the disease.

Tom Whitehead, father of Emily, and President / Co-Founder of the foundation, said, “We want Emily to be able to tell her grandkids that she was the beginning of the end of cancer. Emily does not want to lose any more friends to cancer. We believe in a cure and if we work together we can put an end to this terrible disease.”

Emily was diagnosed with acute lymphoblastic leukemia (ALL) at age five in May 2010 and relapsed twice. After the second relapse, the Whiteheads were told they were out of options to treat her cancer. Not willing to give up, the Whiteheads pursued a radical new treatment called T-cell therapy at Children’s Hospital of Philadelphia (CHOP).

Emily was the first child enrolled in the phase I clinical trial (known as CART-19 or CTL019) in April 2012. Her T-cells (a type of white blood cell) were collected from her body, and then, in a process using a disabled form of the human immunodeficiency virus (HIV), the T-cells were genetically reprogrammed to recognize and attack cancer cells. When the modified T-cells were put back into Emily she became very sick and spent several weeks in the intensive care unit on a ventilator. At one point her doctor said she had only a 1 in 1000 chance of surviving the night. Not only did Emily survive that night, but a few weeks later her family was given the miracle they had prayed for: the T-cell therapy worked. Doctors couldn’t detect a single cancer cell in her body. Today, Emily is nearing three years cancer free.

Emily’s story gained worldwide attention and the trial has continued to achieve unprecedented results and provide hope to many other families facing the disease. Emily and her parents, Tom and Kari, now travel to speak at events and conferences to raise awareness and share their inspirational journey.

To learn more about the foundation, donate, and find out about upcoming events and ways to get involved, visit the website:



Help Emily Raise $9,000 for Cancer Research!

Emily told us back in May that in honor of her 9th birthday she wanted to raise $9,000 to donate to cancer research. When we asked her why she chose that amount she said “because it’s my 9th birthday!” Then she said “well, let’s just make it $10,000 – an extra $1,000 to grow on!”

In honor of Emily’s 9th birthday – and celebrating two years cancer free – we want to help her meet her goal. The goal is to raise $9,000 – er, $10,000 – by the end of September (Childhood Cancer Awareness Month)!!





Emily’s 9th Birthday Week :: Part 2

(continued from Part 1)

The day after Emily’s birthday party we drove to Washington DC for the Leukemia and Lymphoma Society’s (LLS) national conference. We were invited to sit on panel with doctors and scientists so that we could share the patient perspective. Emily sat with us – how many 9-year olds get to sit on a scientific panel with doctors from Penn, Harvard and the FDA?! She drew pictures during the panel – including a picture of T-cells attacking cancer cells. She’s pretty used to these events now and during one of the receptions she left us and said “I’m going to walk around and see who I know”. Usually everyone knows her so she ends up talking to a lot of people. She didn’t even sit with us at dinner – she saw the girls from the Central PA chapter of LLS who she met at another event last year and preferred to sit with them 🙂

Emily with the Central PA chapter of LLS.

At the one of the dinner receptions we met two amazing girls who shared their stories:

  •      Erin Zammett Ruddy is an 11-year leukemia survivor. She was diagnosed when she was 23 years old and just 18 months later her sister was diagnosed with lymphoma (she is also a survivor!).
  •      Jessica Melore is a survivor of a massive heart attack (at age 16), heart transplant, leg amputation, and cancer (twice). She is now a motivational speaker. She happened to be sitting beside us at breakfast and started talking about this amazing cancer organization and that she was going to their gala to receive an award – we realized we were both going to the Solving Kids Cancer Spring Gala two days later! So we saw her twice in one week. 

Photo of Emily with Erin and Jessica.

From DC we drove to NYC to attend the Solving Kids Cancer Spring Gala. SKC is an organization created by two families who lost children to neuroblastoma. The organization raises millions of dollars each year to fund research for more effective and less toxic cures for pediatric cancer patients, including the T-cell therapy and other immunotherapy trials. The emcee for the evening was actor Josh Lucas and was co-hosted by fashion designers Bonnie Young, Donna Karan, Carolina Herrera, and others. The event raised more than $700,000! SKC is making a very big difference in funding research to find better treatments for pediatric cancer.

Emily was dressed for the event by Bonnie Young. We met with her the morning of the gala and Emily tried on several dresses before choosing the pink one (we were surprised she didn’t like a purple dress she tried on!). Thank you to Bonnie Young – it was fun for Emily and us (and thank you to Bonnie’s daughter, Celia Babini, for letting Emily borrow your sandals)!

Scott Kennedy and John London who started the foundation

Actor Josh Lucas as the emcee

Emily on stage with auctioneer Sarah Goulet

Emily with Bonnie Young and Donna Karan / Being interviewed with Donna Karan

Emily with our friends Becky and Ariana (Penn State and THON alum!)

Overall, Emily’s birthday week was really fun but maybe a little too busy! We are glad to have some downtime at home to enjoy the beginning of summer – for a little while anyway! We have some projects and events we are working on and hope to share soon.

Happy Summer!