Advocacy

“See You On Monday”

“See You On Monday”

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. 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...

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Two Girls. Three Cancers. One Goal.

Two Girls. Three Cancers. One Goal.

When Rally Kid Peyton was 15, her life was going as planned. She filled her time with rigorous academics, cross country and lacrosse. Nearing the winter of her sophomore year, Peyton’s quick feet began holding out and persistent headaches became unbearable. To Peyton's “utter disappointment” she was diagnosed with two types of leukemia. Peyton soon began a five-month treatment plan, receiving chemotherapy, full-body radiation and a bone marrow transplant. Sadly, she relapsed almost immediately. Peyton had to start treatment again, including a clinical trial and another bone marrow transplant. Her chances of survival were slim. But Peyton—being the strong and relentless fighter she is—persevered through her second battle against leukemia. A year and a half following her initial diagnosis, Peyton was finally cancer-free! I too was a normal kid before cancer. I spent my days dancing at my...

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A Letter from Dean – December 2020

A Letter from Dean – December 2020

Thank you for opening this letter. And for caring about kids fighting cancer. What a year. We can all agree that 2020 is not a year we will soon forget. When the pandemic struck, I thought about the Rally Kids and their families. Their “normal” is living with an immunocompromised child, yet I have always been inspired and in awe of their ability to adjust and readjust. So personally, and at Rally, I took my cue from them. Our theme became adjust and readjust. And that is what we did. Like many businesses and non-profits, when 2020 started, we were projected to have a record-breaking year. In March, when we sheltered in place to flatten the COVID-19 curve, Rally had to cancel four major fundraising events that were projected to raise $1.5 million. In spite of all that was going on, the Rally Board of Directors stayed committed to our mission and voted to award $3.3 million to 59...

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Vincristine: Controlled Distribution

Vincristine: Controlled Distribution

First, thank you to all the families who reached out and shared your children’s stories with us. Thank you, 11 Alive and reporter Kaitlyn Ross in Atlanta and NBC Nightly News, for reporting on the shortage. These news stories along with others are key to raising awareness. Below is a link to the webinar that the Alliance for Childhood Cancer, of which Rally belongs to, and CAC2 with Dr. Peter Adamson, Chair of the Children’s Oncology Group. Here are a few of the key points from the webinar: Pfizer has received vincristine and has made shipments to hospitals. “Controlled Distribution” of vincristine is currently how Pfizer is distributing the drug which means they will hold a buffer so that no hospital runs out of vincristine and no child should miss a necessary treatment. “Recovery” which means Pfizer should have more than enough vincristine to meet market demand are anticipated as...

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Vincristine Shortage Call to Action

Vincristine Shortage Call to Action

From Dean Crowe Vincristine is the most commonly used childhood cancer chemotherapy drug, and it works by stopping the cancer cells from separating into two new cells. Its job is to stop the cancer from growing. And now, because of the shortage, kids are being denied vincristine. The Vincristine Shortage: What You Need to Know On Monday, October 14, 2019 the New York Times reported that there was a shortage of vincristine. https://nyti.ms/2MBtKCM The article stated that the shortage was due to a manufacturing issue that the sole supplier of vincristine in the United States, Pfizer Pharmaceuticals, was experiencing.  The FDA and Pfizer both confirmed the manufacturing issue. That same day, Rally heard from parents that their children were denied vincristine.  One child was told that, even after having his port accessed so vincristine could be administered, he would not be getting the...

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Vincristine Shortage – Note To Pediatric Oncologists

Vincristine Shortage – Note To Pediatric Oncologists

Dear Pediatric Oncologists, As I’m sure you’re aware, the vincristine shortage is very real. But what I want you to know is that I am sorry. I know this is hard—hard on the families who can’t get vincristine for their kids, but also hard on you as these precious children’s doctors. My heart breaks for the families and for you. It cannot be easy to look a parent and a child in eye and tell them that they will not be able to get vincristine, the very medicine you told them they needed to save their life. I am sorry. We have failed our children who are fighting cancer, and we have failed you as their doctors. I am still trying to figure out how this has happened in America. The sacrifices you made to become a pediatric oncologist are nothing short of heroic. My son is a first-year neurology resident in Boston, so I’ve seen firsthand (and stand amazed) of what every doctor goes through not...

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Advocacy

“See You On Monday”

“See You On Monday”

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...

read more
Two Girls. Three Cancers. One Goal.

Two Girls. Three Cancers. One Goal.

When Rally Kid Peyton was 15, her life was going as planned. She filled her time with rigorous academics, cross country and lacrosse. Nearing the winter of her sophomore year, Peyton’s quick feet began holding out and persistent headaches became unbearable. To Peyton's “utter disappointment” she was diagnosed with two types of leukemia. Peyton soon began a five-month treatment plan, receiving chemotherapy, full-body radiation and a bone marrow transplant. Sadly, she relapsed almost...

read more
A Letter from Dean – December 2020

A Letter from Dean – December 2020

Thank you for opening this letter. And for caring about kids fighting cancer. What a year. We can all agree that 2020 is not a year we will soon forget. When the pandemic struck, I thought about the Rally Kids and their families. Their “normal” is living with an immunocompromised child, yet I have always been inspired and in awe of their ability to adjust and readjust. So personally, and at Rally, I took my cue from them. Our theme became adjust and readjust. And that is what we did. Like many...

read more
Vincristine: Controlled Distribution

Vincristine: Controlled Distribution

First, thank you to all the families who reached out and shared your children’s stories with us. Thank you, 11 Alive and reporter Kaitlyn Ross in Atlanta and NBC Nightly News, for reporting on the shortage. These news stories along with others are key to raising awareness. Below is a link to the webinar that the Alliance for Childhood Cancer, of which Rally belongs to, and CAC2 with Dr. Peter Adamson, Chair of the Children’s Oncology Group. Here are a few of the key points from the webinar:...

read more
Vincristine Shortage Call to Action

Vincristine Shortage Call to Action

From Dean Crowe Vincristine is the most commonly used childhood cancer chemotherapy drug, and it works by stopping the cancer cells from separating into two new cells. Its job is to stop the cancer from growing. And now, because of the shortage, kids are being denied vincristine. The Vincristine Shortage: What You Need to Know On Monday, October 14, 2019 the New York Times reported that there was a shortage of vincristine. https://nyti.ms/2MBtKCM The article stated that the shortage was due to...

read more
Vincristine Shortage – Note To Pediatric Oncologists

Vincristine Shortage – Note To Pediatric Oncologists

Dear Pediatric Oncologists, As I’m sure you’re aware, the vincristine shortage is very real. But what I want you to know is that I am sorry. I know this is hard—hard on the families who can’t get vincristine for their kids, but also hard on you as these precious children’s doctors. My heart breaks for the families and for you. It cannot be easy to look a parent and a child in eye and tell them that they will not be able to get vincristine, the very medicine you told them they needed to save...

read more

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