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)!!
(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.
There is an article in the May 26th issue of Forbes Magazine – it’s mainly about Novartis and how they are making the T-cell therapy a priority so that more patients can be treated. They included Emily’s story in the article which you read online here.
Forbes wanted original photos of Emily but due to our travel schedule they were having a difficult time scheduling a photographer for a photo shoot. So they hired me! They needed photos in 48 hours and of course the weather forecast showed pouring rain over the next 48 hours. We had a break in the weather right before school one morning where I took a few photos of Emily and Lucy for about 5 minutes before it started to rain again. We waited until later that evening when the rain stopped for about 15 minutes and I took more photos. I typically only take photos outside in natural light but I did manage to get some inside. They wanted photos of Emily doing every day things and didn’t want her looking at the camera. The first photo above is the one used in the magazine and the others are just some of my favorites!
I like this one in black and white.Of course most of the photos also had Lucy in them!