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
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.
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.