“See You On Monday”

Mar 15, 2021 | Advocacy, Childhood Cancer, Dean's Reflections, Rally Blog | 1 comment

A year ago Friday I looked at the Rally staff and said, “See you on Monday.”

On Saturday, I spent the day doing research on COVID-19. By Saturday night I was looking up best practices for working from home.

On Sunday, I called the leadership team together. Within two hours we had three Zoom accounts and a meeting scheduled with the whole team.

I told the Rally team we would be sheltering in place and meeting by Zoom each morning and afternoon. I broke the news that we would not have any of our three scheduled Rally On the Runway events and that the advocacy team would not be going to Washington, D.C. the next week as planned.

A zoom call with the Rally Staff

I shared that we were going to take our inspiration from our Rally families, who adjust and readjust almost on a daily basis without seemingly missing a beat.

One team member said, “Childhood cancer isn’t going to take a break because of this pandemic, and neither are we.” I couldn’t have agreed more.

I honestly thought we would be back “to normal” after Easter. Well, it’s been a year and we still aren’t back. Normal will never look like it used to look. But honestly, that isn’t all bad.

Inspired by our Rally families, we all dug deep and learned to do things we didn’t know we could do. I am so proud of all of Rally. And by all of Rally, I mean our supporters, our families, our staff and volunteers, our researchers and our three boards.

I want to share a few highlights from the past year:

  • After we sheltered in place, having no idea what the future would hold, the Rally Board of Directors voted to give $3.3M in research grants—the most we had ever funded—bringing our total contribution to $20M. We have never been prouder to support research for children fighting cancer.
  • We learned what PPE was—personal protective equipment—including masks of which there was a shortage. A Rally team member started making masks to send to any cancer family that needed them.
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Rally Masks made by Rally Kid Parent & Family Liaison, Tami

  • Rally heard from families who were inpatient at the hospital and needed snack foods and meals. They were afraid to go to the cafeteria and bring COVID back to their kids. We held food drives—our back office looked like a Costco—and increased the number of hot meals we delivered to the hospitals. One hospital told us how very grateful they were that we still were willing to deliver hot meals, as there had been a sharp decline.

Rally Kid Sara in the hospital family room

  • Rally increased our Family Emergency Fund. We knew families were struggling financially as parents lost their jobs or were furloughed. We also helped with travel expenses for families to get treatments that were out of town. We were grateful for supporters who stepped in and donated, allowing us to help more families.
  • While we couldn’t go to Washington, D.C., we advocated via Zoom meetings with many congressional offices asking for cancers in children, adolescents and young adults to be included in the Department of Defense (DoD) Medical Research Program. Our efforts paid off, and we learned that $52M will be available for nine cancers specific to children, adolescents and young adults—a 126% increase over the previous year. We are grateful for Congresswoman Ann Kirkpatrick and her office who were our champions.

  • We learned that advocacy efforts from 2019 resulted in $10.8M in new grants from the DoD for cancers in children, adolescents and young adults, bringing the total given by the DoD Medical Research Program to $29M in four years.
  • In November 2020, the FDA approved naxitamab as a new drug for neuroblastoma. The survival rate for kids with high-risk neuroblastoma went from less than 5% to 50% because of the research for this new drug. We started funding this research at Memorial Sloan Kettering in 2009, in honor of Rally Kid Alexa. Though she lost her battle, it’s special to think that Rally Kid Alexa was on one of the early trials and that, today, Rally Kid Addie and several other Rally Kids are cancer-free from this very .

Rally Kid Addi & Rally Kid Alexa

  • We had so many supporters call or just send checks to support Rally through this year. It was so encouraging to receive those phone calls and open the mail to find generous gifts.
  • We learned how to put on a successful virtual event by attending many webinars and talking with organizations who were willing to share what had and hadn’t worked at their own events. We were so fortunate to have experts in television and video come work alongside us and teach us. We were amazed when our virtual Benefit Bash raised over $1M!

Rally’s Virtual Benefit Bash that took place back in November

  • Best of all, we attended drive-by end of treatment parties for Rally Kids while observing social distancing and wearing our masks. Although these weren’t “normal” off-treatment parties, they were celebrations that brought hope and joy.

  • Sadly, some aspects of our “normal” life did not change over the past year.

    We wept with families who heard the devasting news that their child’s cancer had returned, and our hearts broke as they navigated the rough and rocky waters through COVID trying to find treatment options. We cried fresh tears when news came that a Rally Kid had earned angel wings and that the families couldn’t have a big celebration of life. We listened and tried to help when new families found out their babies had cancer.

It is true. Childhood cancer doesn’t take a break. And it is true that all of Rally—our supporters, our families, our staff and volunteers, our researchers and our three boards—has never taken a break in the fight for children with cancer.

So, for the entire Rally community, the Rally Family, we are proud to continue to say, “See you on Monday!”

1 Comment

  1. Ginger Diamond

    Inspired!
    As always Rally On!

    Reply

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