Childhood Cancer

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Ependymoma

Ependymoma is the third most common type of childhood glioma, a type of brain and spine
tumor. Scientists believe ependymoma tumors develop from the ependymal cells, the cells that line the ventricles (fluid-filled spaces in the brain) and the central canal of the spinal cord. Ependymomas are graded on a scale of stage I to III and include several subtypes, such as myxopapillary ependymomas, subependymoma, regular ependymoma, anaplastic ependymoma and other variants. 

Latest Ependymoma grants

Stephen Mack, PhD, Principal Investigator
The Cleveland Clinic Foundation
Young Investigator Grants, Awarded 2016
George Jallo, MD, Principal Investigator
The Johns Hopkins University School of Medicine
Innovation Grants, Awarded 2013
Linda Resar, MD & Richard Schlegel, MD, PhD, Principal Investigator
The Johns Hopkins University School of Medicine
Innovation Grants, Awarded 2015

Latest Ependymoma blog posts

September 15, 2016

Alex’s Million Mile is held every September to raise awareness about childhood cancer and to raise critical funds for childhood cancer research. There are thousands of participants—all around the world—and among the most dedicated are our childhood cancer hero families. Shannon and Jake Leonard, parents to Caleb, Xavier and Asher, log their miles in Kellyville, Australia, a Sydney suburb--a place that feels a million miles away from their hometown in Kansas. 

Their youngest son, Asher, was diagnosed with ependymoma, a tumor of the brain and spine, in October 2011 when he was just 2 years old. Asher passed away, at the age of 4 1/2 in July 2013. 

That year was also the start of Alex’s Million Mile and what would become the start of a family tradition for the Leonards and a new way forward in the fight against childhood cancer. Here is Shannon’s Alex’s Million Mile story:

The inaugural year for Alex’s Million Mile, September 2013, was just two months after Asher died. We were all reeling. The kids were back to school. Jake was back to work. I was left in the house, alone, with what felt like no purpose. I left my job the day Asher was diagnosed in October 2011, and had spent every day since taking care of him, researching treatments and doing everything in my power to give him happy, meaningful days. 

Participating in Alex's Million Mile that first year gave me a sense of purpose. I got up every day, put on my gym clothes and running shoes and hit the pavement. With every step I thought about Asher. I thought about all the years he'd miss living on this earth; all the steps he'd never run or walk; and all the firsts he'd miss. I pushed myself every day to run a little further, a little faster, because Asher couldn't.  

Our family joins Alex’s Million Mile each year for the same reasons, but I can say that every step I run and walk, doesn't carry the same weight it did 3 years ago. I smile and even laugh when I run; thinking about Asher and all the wonderfully funny, amazing and compassionate things he did. In his 4 1/2 years , Asher taught us how to live in the face of adversity. He never complained. He never asked why he had to go through such hell. He was a happy little boy, who loved knock-knock jokes, cooking, Star Wars, playing outside and his big bothers. He was always concerned about others and even on the hardest, darkest days, he was always asking how everyone else was doing, making sure we were all ok. 

Our family will always continue to do what we can—whether that be bringing awareness, seeking donations or gathering support—to  ensure that someday, no family has to watch their child and sibling suffer at the hands of cancer. We know that our hearts and Alex’s Lemonade Stand Foundation’s mission align. We will continue to support all of their efforts to further research and support families.

We moved to Australia in July 2016. To have this amazing experience of living in another country, experiencing a whole new part of the world and giving our boys the opportunity of a lifetime, was an easy decision. Our boys have such a deep appreciation for life, having lived through the death of their brother. In discussing the move with the boys, it was Caleb who looked at us one day and said "Mom, this is an easy decision. We've had to make the hardest, most awful decisions with Asher, and THIS is not a hard decision.”

The majority of our team members are from Kansas and Ohio, our "homes." Asher's Stormtroopers began within weeks of Asher's diagnosis, as my sisters wanted to make t-shirts to support Asher and our family. Our boys suggested the color yellow, like Asher's blanket, that was always in his hand, a pale yellow color, was named "yellow." Asher loved everything Star Wars, due to his brothers’ love of Star Wars, and the name and design was born. We've stuck with the shirts and team name, as we carry on in honor and memory of Asher.

You can read more about Asher’s story and Asher’s Stormtroopers here. 

March 21, 2016

“Oh, you’re Campbell’s sister.” This is what I would hear whenever I was being introduced to a new person at my school, or in my town, or at my dance studio, or at work, or anywhere that there was someone new. My youngest sister, Campbell, was diagnosed with cancer the summer before I went into sixth grade. She was three. I never thought that her diagnosis would still be impacting my life in major ways almost seven years later.

I am currently a high school senior and, like many others, I had to go through the whole college application process earlier this year. I thought I was prepared, but then I was asked how many siblings I have. Automatically I said two, but I hesitated. The summer before my junior year, my sister died after battling ependymoma, a cancer of the brain and spine, for five years and two days. It sucked enough having to deal with losing one of my sisters, but being asked how many siblings I have and their ages? Wow, low blow.

That same summer, I was set to attend the Alex’s Lemonade Stand Foundation Student Leadership Academy at Villanova University. I had just gotten back from a two week trip to France when I found out that my sister had been put on hospice. The following week was the academy, but, under the circumstances at home, I was lucky enough to have my acceptance deferred to the following year.

The summer before my senior year, I finally got to attend the ALSF Student Leadership Academy and I am glad to say that I had the time of my life. It has always been hard for me to put myself out there, but at a camp geared towards teenagers interested in helping kids with cancer? With my story? Talk about being an awkward person. Luckily, my roommate and I hit it off right away and I quickly made more friends after that. The kids at the Student Leadership Academy were from across the country, from Texas to New Hampshire, and were interested in different things from entrepreneurship to student government. Although we were all different in so many ways, we all had a connection that you couldn’t find anywhere else.

The Academy taught me how to be myself, to be a leader, and to not be afraid to tell MY story. Although the patients are super important, the siblings are just as important and play a crucial role in their brother or sister’s fight. Time and time again, I found myself telling my sister’s story when I was asked to share my story. But the Academy helped me find the strength that I didn’t know I had to tell my side of what I went through.

Both my sisters taught me how to love someone unconditionally, and that sisters are forever. After my sister died, someone once corrected me, when I said that I had two sisters. They told me that I only had one, but I turned right around and said “no, as much as you disagree with me, I will always have two sisters.” I may or may not have said a few things after that that weren’t as kind, but I’ll leave those out because that isn’t my point. My point is that once you have something that you love so much, even if it’s only for a short eight years, you will always have that something with you.

If you are looking to attend the ALSF Student Leadership Academy, I strongly encourage you to do so. Trust me when I say that you will find things about yourself that you never knew, and that you will make friends and connections you never thought you would have. 

Caitlin Hoyt is 18 years old and has two younger sisters, Caroline and Campbell. In the Fall, she will be a freshman at Elon University, studying dance science on a pre-physical therapy track. 

The 2016 ALSF Student Leadership Academy is open to rising high school juniors and seniors and will begin on Monday, July 25th and will last through Thursday, July 28th, 2016 at Villanova University. The program, lodging and meals are provided free of charge to accepted students (students must arrange their own transportation to Philadelphia).  Learn more here and apply now to join us! 

 

 

 

 

November 24, 2015

by Trish Adkins, Web Content Writer for ALSF and Hero Mom

This is my first Thanksgiving working at Alex’s Lemonade Stand Foundation. 

When I asked my co-workers to share the things they were thankful for, I was floored by their amazing, heartfelt responses. So many of us at ALSF have a personal experience with childhood cancer—we are mothers, fathers and siblings of children who have battled. More of us have a close personal history with adult cancer. Some of our colleagues are survivors who battled adult cancers and know very personally the toll it takes on your body. There are also many ALSF staffers and volunteers who have no direct connection to cancer. These individuals made a choice to join the fight, inspired by our founder Alex Scott and all the childhood cancer heroes. 

Fighting childhood cancer takes an army. 

I am thankful for all these amazing people who have dedicated their lives to finding cures for all children. My daughter Lily battled childhood cancer. She was 14 months old when she was diagnosed with ependymoma, a brain tumor. Lily is now 9 years old and cancer-free. Her health is one of our biggest gifts—but cancer and Alex’s Lemonade Stand Foundation have given us so many more gifts. 

None of us can change the past diagnosis, but all of us soldier on together— doing our part to fight all these horrific diseases and carrying on the amazing legacy of Alex Scott. Alex’s dream is a world where childhood cancer treatments worked—a world where sick kids get better.  On the days when this work seems too much, I think of Alex, who raised $1 million while fighting neuroblastoma.  I think of Alex saying she could do it, if everyone helped. Alex’s legacy teaches each of us that nothing is insurmountable when we all work together. 

Alex Scott gave us all the gift of empowerment and the gift of each other. Her dream created a place where lemons are always lemonade and a place where cures will be funded, found and delivered to the children who are so desperately waiting. 

At ALSF, we all work together. From staff to volunteers to hero ambassadors to SuperSibs to stand hosts to corporate sponsors to bloggers to the media to donors to the person who always clicks “like” on a Facebook post—each of us work together to save lives, find cures and grow hope. 

I am thankful for the lemonade that flows from pitchers and cups and hearts and minds all over the world in honor of the little lemonade girl with a dream. I am thankful for my incredible co-workers. I am thankful for the health of my daughter Lily and her two SuperSibs, Chloe and Nicholas, who all count Alex as their hero and role model.

Each of us at ALSF share in this gratitude for a little girl who changed the world, one cup at time. 

Enough of me, here’s what my other heroes—the children who have fought this disease, their amazing SuperSibs, parents and of course, the incredible ALSF staff are thankful this Thanksgiving.  But before I go: I am thankful to each of you. If you are reading this, it is because you, too, have shared in that lemonade magic. Thank you for your donations, your time, your energy and for believing in Alex’s legacy.

From our Heroes, their families, SuperSibs and the ALSF staff:

"Our family is thankful for organizations like Alex's Lemonade Stand who continue to raise money for research, awareness and hope for cancer families.”
"I am thankful for Slim Jims and roast beef."
"Our family is thankful for second chances." 
"I am thankful for a break from treatment for the holidays."
"I am thankful for all those that volunteer / help in any way to make our children’s lives a little bit brighter."
"I am thankful that the cancer family community is so full of hope."
"I'm thankful my survivor gets to grow up!"
"I am thankful for Mommy and Daddy!"
"I am thankful for HoHo and trash trucks and Papa. "
"I am thankful for the Tooth Fairy!"
"We are thankful for our family and friends and all the support we get from them."
"I am thankful for my life and that I get to be a big sister." 
"I am thankful for my dog, my sister, my home, my brother and my whole family."
"We are thankful for higher mountains to climb!"
"I am thankful for my crazy brothers and sisters."
"I am thankful to be alive."
"I am thankful for everything." 
"I am thankful for medicine."
"I am thankful for family."
"I am thankful to be healthy enough to enjoy Disney World."
"I’m thankful for the opportunity to spread childhood cancer awareness and get people involved with ALSF in my new city, Boston. "
"I am most thankful for my 4 wonderful children who make me smile everyday and that I get to work and live with my best friend, my husband Jay."
“I am thankful for the opportunity to keep my son’s memory alive through my work with ALSF, while helping other children and families who are affected by childhood cancer.”
"I am thankful for all of our amazing hero families who continue to inspire and motivate me to work hard every day."
"I am thankful for my supportive team here at Alex’s who pushes me to be better everyday."
"I am thankful for a clean bill of health, great family and friends, and the privilege to work at an organization that I am proud to be a part of!"  
"I am thankful for laughter."
"Grateful to have such a close relationship with my teenage daughter!"
"I am thankful to work with families."
"I am thankful for the opportunity to live out my dream by working for ALSF; to help kids fight cancer every day!"


Thank you, and happy Thanksgiving!