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Read more about how one of our early Innovation Grants helped lead to a major breakthrough in the treatment of glioblastoma, an aggressive and often deadly brain tumor. 

In 2006, ALSF funded a project called “Targeting Pediatric Brainstem Glioma with Oncolytic Polioviruses,” led by Dr. Matthias Gromeier, a researcher at Duke University. His work centered upon using a modified version of the polio vaccine to attack malignant brain tumors. 

Earlier this month, Dr. Gromeier’s continued work has resulted in the FDA designating his treatment protocol as a “Breakthrough Therapy,” for recurrent glioblastoma, a deadly brain tumor. Now, hundreds of patients have hope; when before there was none.

Getting to this point took years and several thousand hours of research.

Shortly after the ASLF funding was complete, journal articles, like this one, started being published about the promise of the research and the breakthroughs coming from Dr. Gromeier’s team. As his project progressed, more stories of the success of a clinical trial using a modified version of the polio virus to treat recurrent glioblastoma, an aggressive brain tumor, began surfacing. 

One patient, a young woman battling relapsed glioblastoma, ran out of treatment options. She was the first person to try Dr. Gromeier’s polio virus treatment. In the trial, the patient’s brain tumor was infected with the polio virus. This triggered an immune response and the patient’s body began attacking the brain tumor. 

The tumor shriveled up and disappeared. The treatment worked and this 20-year-old patient was able to go away college to study nursing. Someday she plans on becoming a pediatric oncology nurse. 

This early Innovation Grant is truly a breakthrough. As a designated ‘Breakthrough Therapy,' Dr. Gromeier’s treatment will be fast tracked straight to the patients who need it.

Reaching this milestone for Dr. Gromeier is what the ALSF Innovation Grants are all about. Our Scientific Advisory Board uses a thorough review system to make sure the projects most likely to succeed receive funding. Even with this elaborate review system and with leading scientists guiding the process, it is still difficult to tell which projects will be successful. There are so many unknowns in science and science often takes a long time show results on whether or not it will work to help kids.

The Scientific Advisory Board is just one piece of the breakthrough process—it is also thanks to the many, many supporters that join together to fund research. 

Thank you to Dr. Gromeier for being so creative and developing this idea into a treatment and thanks to all the ALSF donors who made it possible for us to be a funder of this project.

You can learn more about Dr. Gromeier’s amazing breakthrough as featured on 60 Minutes earlier this month. Also, read more about the amazing researchers striving for more breakthroughs. 

Categories: 
glioblastoma

Taking innovative approaches, ALSF funded researchers are working to bring cures to all children—everywhere.

In Kenya, where proper diagnostic testing is severely limited, many children are never diagnosed with leukemia and die without ever having a chance to receive treatment. 

Dr. Terry Vik, a two-time ALSF Epidemiology Grantee and associate professor of pediatrics at Indiana University, is leading a team of researchers working to develop leukemia diagnostic techniques at Moi Teaching and Referral Hospital in Eldoret, Kenya.  Using existing blood slides, stained for the detection of malaria, the team is working to develop methods for proper and timely diagnosis, which can lead to treatment for children with leukemia.

Malaria, which is prevalent in Kenya, is most often diagnosed by looking at a blood smear. Dr. Vik’s study made use of these existing slides, reviewing them for high white blood cell counts (WBC) or severe neutropenia—two key markers that can indicate leukemia. In the first phase of the study, which began in 2012, the team collected and analyzed nearly 40,000 slides from patients with possible malaria. A total of 32,000 blood slides were from one site and of those, 549 slides had WBC or severe neutropenia.  

For the second and current phase of the study, Dr. Vik’s team developed a technique to isolate DNA from the slides and use it for further genetic studies that could definitively diagnosis Acute Lymphoblastic Leukemia (ALL).  The team’s technique uses a PCR Method (a technique which rapidly clones genes) to amplify genes for T- and B-cell receptors. By doing this the team can see if the high white blood cell counts have a single clone of the receptor that would indicate they came from ALL and not from another disease or disorder.  

Since analyzing blood smear slides is familiar to local technicians who utilize this method to screen for malaria; local technicians can be trained to flag slides that show indications of potential leukemia.

“The ALSF funds are allowing us to teach the Kenyans that leukemia exists and can be diagnosed and treated early, making a difference in these children's lives,” said Dr. Vik. 

The current treatment protocol for ALL in Kenya is similar to the treatments used in the 1980s in the United States. However, even with a less aggressive treatment approach, Dr. Vik believes that proper diagnosis and timely treatment can save over half the children diagnosed with ALL.

Since the team is studying previously collected blood smears, tracing the patient with possible ALL remains a challenge. Dr. Vik is hopeful that further phases of his research can lead to more timely diagnosis and treatment of childhood leukemia in Kenya.  

The ALSF Epidemiology grants are designed to support the research of investigators who have a specific focus on incidence, distribution, detection or prevention of childhood cancer. Dr. Vik's research is co-funded by the Northwestern Mutual Foundation. 

ALSF is working to fund breakthroughs and find cures for all types of childhood cancer. Read more about our innovative grants program here. 

Celebrate Hero Moms all May-long! Thank you to the amazing hero moms who fight childhood cancer alongside their children, tirelessly raise awareness of the need for more research and never stop believing that there is hope for cures. Share May's social media post with your network as a tribute to these amazing women making a difference everyday for all children. 

About Monthly Shareables:

You can help Alex's Lemonade Stand Foundation raise awareness of the need for childhood cancer research and cures for all children! Each month we will share a new "shareable," an image for you to share with your social media network. Every time we start a conversation about childhood cancer, we bring ourselves closer to cures.

How To Share:

Sharing is easy! Links to the shareable on Facebook and Twitter are on the tabs below.  Simply click on each tab and share, like and favorite! Thank you for helping ALSF fund innovative, cutting-edge childhood cancer research. 

 

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Special thanks to the very special Hero moms who shared their wisdom and lessons with us: Miriam Matz, mother to Ellie; Laurie Thompson, mother to Caelin;  Keren Fitzgerald, mother to Cole; Stephanie Cassabria, mother to Nico; Trish Cartafalsa, mother to Ryan; Dina Dodd, mother to Owen, Lauren Boerlin, mother to Nathaniel, Tish Hearne, mother to Thomas; Heather Banaszek, mother to CJ.

If you asked any hero mom—those mothers with children battling childhood cancer—who their hero was, they would each have the same answer:

My child.

If you asked these hero moms what they would change in their lives—obviously they’d each wish cancer away. However, they’d never wish the lessons away. Motherhood is the toughest job (right in line with fatherhood). Toss childhood cancer in the mix and the entire journey changes; what’s considered normal becomes something else entirely. 

We talked to a group of hero moms to find out what they learned from mothering through, during and after childhood cancer.  Here are ten motherhood lessons from childhood cancer: 

1. Our children have far more strength than we do and we draw our strength from them. We watch them endure treatments that would destroy us; yet they do it everyday and still find the strength to play, laugh and be kids. 

 2. Hold on to hope tightly, without fear. The love for our children helps us move mountains and the hope for a cure for our children and all children keeps us moving forward.  Look towards the future—make plans and keep dreaming big, no matter what is thrown in your path.

3. Childhood is beautiful. Kids want to be kids. No matter how sick and awful they feel, they take any opportunity possible to feel normal and to be happy.

4. Time spent with your family, whether in a waiting room or a hospital bed or at home or away, is the greatest gift of all. Treatment brings so many quiet moments when you can truly focus on each other. 

5. It takes a community; when one feels included and supported anything is possible. We never fight alone. We need help and we know we can’t be afraid to ask for it and conversely, to offer it when we can to other mothers. New friendships form, old friendships deepen and strangers really are kind, loving and available, when you least expect it.

6. There are no right words. Even though we’ve been through childhood cancer, we still struggle with the right words to say to grieving friends. We know sometimes there is nothing to say. It is okay to simply offer a listening ear and friendship. 

7. Never feel guilty taking time for yourself.  Self-care, meditation, stress relief, naps and even just a warm cup of tea in a quiet place are all critical to your health and your ability to embrace hope and order in the midst of chaos. Never feel guilty. 

8. You will negotiate, challenge, lobby and love on your child’s behalf, but they are the ones who will fight the battle.  Your love for your child will carry you to the battle line; but it is their fight and you will learn to observe and guide them while letting go of expectations and living in the glow of their strengths.

9. Pretty much everything in life seems small when your child’s life is on the line. Regular life and its expectations continue to march on when your child is in treatment; but you have a clear understanding of what is important and what is not. 

10. During diagnosis, treatment, recovery and even in death, our children teach us some of the greatest lessons and give us the greatest gift: calling us Mom. There is nothing more we need. We just need to be their moms. 

Happy Mother’s Day to the amazing Hero Moms, who fight along their child and support the fight for cures for all children battling childhood cancer.  

Warmer days are the perfect time to help your kids host a lemonade stand!  Hosting a stand is more than just a great way to raise money to support Alex’s Lemonade Stand Foundation (ALSF) and childhood cancer research—it is also a great learning experience for your children! 

Our founder Alex Scott was just 4 years old when she hosted her first lemonade stand. She is a bright example of how even the youngest children can make a difference. 

Here are seven things your kids can learn from hosting a lemonade stand of their own:

1. Event Planning
Hosting an ALSF lemonade stand takes just enough work ahead of time  so make it a great opportunity to teach them about  event planning! Your children can help you pick a location, a date and a time for your lemonade stand. Suggest that they consider places that are easy to get to, have good foot traffic and access to water (for your lemonade!). Let them come up with ideas, make a list of pros and cons and put your plan down on paper. 

2. Budgeting
After you’ve planned the basics of the event, take a few minutes to make a budget. Kids can brainstorm the supplies needed (lemonade, cups, decorations) and how much each of these items will cost.  Then, set your lemonade stand fundraising goal! How much do you want to raise and how many cups of lemonade will it take to reach your goal?

3. Marketing
What’s a lemonade stand without customers? Take some time with your kids to figure out creative ways to market your stand. Create homemade posters and flyers to share with family and friends. Send out invitations on social media and via email to your contacts. See what wonderful ideas your kids have and let the world know! 

4. Culinary Skills
Teach your aspiring chefs some cooking skills in the kitchen! Making lemonade is a great way to teach children how to read a simple recipe and an opportunity to take their math homework out of the classroom and use it in real life. Measuring ingredients (and doubling or tripling a recipe) is a great exercise  in fractions. If you want to kick it up a notch: plan some additional lemonade-themed baked goodies for the stand.

5. Customer Service
Kids can practice all those good manners—like please and thank you—and get a lesson in customer service. Before your ALSF stand, practice customer service skills such as asking if they want traditional lemonade or pink; how many cups; and any other questions you think your customers might have! 

6. CommunityHosting an ALSF lemonade stand in your front yard is a great way to get to know your community! Invite your neighbors, local leaders, police officers, fire departments and teachers. Help your children introduce themselves to local community members that you know. 

7. Philanthropy 
Hosting an ALSF lemonade stand is a great way to introduce kids to the concept of philanthropy. No matter how much money your lemonade stand raises—your kids will make a huge impact for other children battling childhood cancer. Every penny and every dollar raised for ALSF  adds up to money for research grants to find a cure. Just $50 funds one hour of ground-breaking, innovative childhood cancer research. Share Alex’s story with your children and show them how they are just like Alex: kids who want to make the world a better place for other kids!

Ready to plan your lemonade stand? Join ALSF for our annual Alex’s Lemonade Days from June10-12. Register your lemonade stand for this weekend and join with others nationwide to make a difference for children fighting childhood cancer. 

 


Happy April! Spring is in the air. At Alex's Lemonade Stand Foundation, warmer weather means it is time to prep for our annual Alex's Million Mile in September. 

To help everyone train for September, we've launched our One Million Mile week long training plan. Our plan is simple: runs are broken down into a daily, ambitous workouts that incorporate a mix of running, walking, climbing and cycling.  Start your training now, so in September, YOU and you alone can go the Million Miles for Alex's Million Mile--run, walk and ride! 

Sound impossible? Well, alone it is! Join Alex's Million Mile and together we will go 1 million miles for childhood cancer. Each September, teams join together to collectively walk, run or ride one million miles to help fight childhood cancer.

Last year, over 15,000 people logged over 960,000 miles! Together, we will find cures, one mile at a time! Sign up for Alex's Million Mile today and share this post to spread the word, that together, we can cure childhood cancer!

About Monthly Shareables:

You can help Alex's Lemonade Stand Foundation raise awareness of the need for childhood cancer research and cures for all children! Each month we will share a new "shareable," an image for you to share with your social media network. Every time we start a conversation about childhood cancer, we bring ourselves closer to cures.

 

How To Share:

Sharing is easy! Links to the shareable on Facebook and Twitter are on the tabs below.  Simply click on each tab and share, like and favorite! Thank you for helping ALSF fund innovative, cutting-edge childhood cancer research. 

Social embeds

Facebook

We are excited to launch our 1 million mile week-long training plan! The plan is simple and includes ambitious daily...

Posted by Alex's Lemonade Stand Foundation on Friday, April 1, 2016

Alex's Lemonade Stand Foundation founder Alex Scott always believed we could help children battling cancer if we all worked together. ALSF has a team of Community Outreach Specialists that work in their home region to spread awareness, host events and raise funds for innovative, ground breaking childhood cancer research. This week, we will spotlight the amazing things happening in Kansas City, Missouri.

You might wonder, why Kansas City? Well, like our founder Alex Scott, Kansas City is the home of another amazing childhood cancer hero, Charlie Walsh. Charlie was diagnosed with Atypical Teratoid/Rhabdoid Tumor (ATRT), a brain tumor, when he was 3 years old.  Today, Charlie is 11 years old and continues to inspire his hometown to join the fight against childhood cancer. His aunt, Susan Blowey is our Community Outreach Specialist in Kansas City. 

Kansas City is also the home to Midwest Lemonade Days (founded and sponsored by Hy-Vee grocery stores), Alex Gordon (World Series Champion with the Kansas City Royals, who was honored as the 2016 ALSF Volunteer of the Year) and several other amazing, inspiring events. 

Here are some of the great things happening in Kansas City:

Alex Gordon Baseball Classic (April 22, 23 & 24)

Local youth baseball teams participate this annual baseball tournament that benefits ALSF. Teams are encouraged to host lemonade stands and fundraising events prior to the tournament. The teams who raise the most are treated to amazing experiences courtesy of Alex Gordon and the Kansas City Royals. Last year the event raised over $34,000. 

Lemon Mixer (May 20) 
Enjoy this adult lemonade stand with cocktails by Tito’s Handmade Vodka and sponsored by Nick and Jake’s, Hy-Vee’s Grocery Stores, HerLife Magazine, Kendra Scott, and Pace Sound. Live auction items include Kansas City Royals Diamond Level tickets, an in-home catered meal for eight by Nick and Jake’s plus amazing silent auction surprises. Grab your tickets here. 

Midwest Lemonade Days (June 3-4)
Since 2004, Hy-Vee grocery stores have supported ALSF and raised over $1 million during Midwest Lemonade Days. Twenty-six Hy-Vee locations in the Kansas City metro, Lawrence, St. Joseph, Topeka and Manhattan, host lemonade stands manned by over 600 volunteers. Local childhood cancer hero families attend as honored guests to share their story with volunteers and donors. Hy-Vee was also integral in matching Alex Gordon with ALSF. 

Royals Family Lemonade Stands (August)
Each year, Jamie Gordan, wife of Alex Gordan, leads the Royals Wives and their children in hosting a lemonade stand in the Outfield Experience at Kauffman Stadium. In addition, Aramark and Royals Charities make a donation for every fresh squeezed lemonade sold during the regular season at Kauffman Stadium 


Freedom Ride (July 2)
Starting in Independence Missouri, the Freedom Ride, now in its 8th year is a 35 to 75 scenic bike ride through country roads in Missouri. One of the most unique parts of the Freedom Ride are the SAG stops on the ride. Each stop features pie for weary riders! Get more details here.

BBQ and Lemonade for A Cure (August 26 & 27)
 This 2nd annual event brings BBQ competitors together for a cause. Being held at Lake Paradise Resort in 2016, barbecue enthusiasts can camp, play sand volleyball or eat great BBQ! 

Want to learn more about the events in Kansas City? Want to volunteer, contact Susan Blowey, the Community Outreach Specialist for details. 

 

“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! 

 

 

 

 

When Theo Hansel was 3 years old, he was diagnosed with stage IV high-risk neuroblastoma, a childhood cancer that most commonly originates in the adrenal glands. At the time of his diagnosis, the survival rate for high-risk neuroblastoma was just 40-percent, a bleak outlook for a little boy just starting his life. 

Today, Theo is 18 years old and preparing for a career as a pediatric oncologist. 

How his life came full circle speaks to the courage of children who battle childhood cancer—the disease leaves its scars, but it also seems to ignite passion, strength and courage in the littlest fighters. 

Grueling Treatment
Theo’s treatment protocol was intense and grueling. It included five rounds of chemotherapy, surgical resections of tumors, two stem cell transplants, many weeks of local radiation and six weeks of Accutane, a drug that can prevent recurrence of neuroblastoma following chemotherapy and stem transplants in some patients. 

After his second stem cell transplant, Theo developed Epstein Barr Virus and a lymphoproliferative disorder in his liver, which would land him in and out of the ICU over two months, struggling to breathe and struggling to survive. 

If it was not for the skilled nurses and doctors at the Children’s Hospital of Philadelphia, Theo might not have survived. 

One year after his initial diagnosis, Theo was finished treatment. It would be a month before he could eat and speak; and three months until he finished rehabilitative therapy and was able to leave medical quarantine. After 15 long months, Theo was finally back and able to continue his childhood. 

Future Pediatric Oncologist
Theo does not remember being sick; however he feels he owes his life to the skilled medical professionals who cared for him and guided his treatment plan. 

“I was given my life when too many others were not. Now I want to give it back to other patients the way my doctors and nurses gave their time and expertise to me,” said Hansel.

Now a freshman at Harvey Mudd College, a prominent science and engineering college in California, Theo spent his high school summers in the lab of Dr. Yael Mosse at the Children’s Hospital of Philadelphia. 

In addition to time in the lab, Theo spent time shadowing Dr. Mosse as she treated patients—some of whom had exhausted all treatment options. 

“Dr. Mosse often speaks of how inspired she is by her patients, by their strength and resolve. Now I am, too,” said Theo. 

This summer, Theo will study neuroblastoma as an Alex’s Lemonade Stand Foundation POST (Pediatric Oncology Student Training Program) grantee in the lab of Dr. Clay Gustafson (an ALSF ‘A’ Award and Reach Grantee) at the University of California San Francisco. He will also shadow Dr. Kate Matthay, who is a Center of Excellence and Program Infrastructure grantee and member of the ALSF Scientific Advisory Board. 

The ALSF POST Grant is designed for undergraduate, graduate and medical students who have an interest in pediatric oncology research and would like to experience the field first hand. Students train with a pediatric oncology research mentor. Students may join a research project underway in a mentor’s lab or begin an original investigation with the mentor. POST Grantees are able to launch a career in pediatric oncology research right away and go on to continue innovative, cutting-edge research that will result in safer treatments and cures for all children battling cancer. 

Theo suffers from a number of side effects from the toxicity of the chemo like high- frequency hearing loss, kidney cysts and hypothyroidism—but none of these deter him from pursuing a career as a pediatric oncologist.

“I have the responsibility to give back to those who did not survive or are currently fighting. I would like to do so in any way I can,” said Theo.

ALSF has funded over 550 childhood cancer research projects at 102 top hospitals and research institutions. Read more about the ALSF Grant Program and how cutting-edge, innovative research works in the fight against childhood cancer. 

Happy March! This month, we are gearing up for lemonade stand weather--warmer, sunnier days! Our founder, Alexandra "Alex" Scott (1996-2004) started a national fundraising movement with a simple lemonade stand, intended to raise money to help find a cure for all children with cancer. Today, Alex's Lemonade Stand Foundation has raised over $120 million and funded over 550 research projects dedicated to finding a cure for childhood cancer!

It all began with one front yard lemonade stand! Help us tell the world that cures are possible if we all work together. Share our March social media shareable and spread the world: Together, we will find a cure for childhood cancer! 

Want to get more involved? Sign up to host a lemonade stand during Alex's Lemonade Days June 10-12, 2016. Learn more about Lemonade Days here. 

About Monthly Shareables:

You can help Alex's Lemonade Stand Foundation raise awareness of the need for childhood cancer research and cures for all children! Each month we will share a new "shareable," an image for you to share with your social media network. Every time we start a conversation about childhood cancer, we bring ourselves closer to cures.

How To Share:

Sharing is easy! Links to the shareable on Facebook, Twitter, Pinterest and Instagram are on the tabs below.  Simply click on each tab and share, like and favorite! Thank you for helping ALSF fund innovative, cutting-edge childhood cancer research. 

Social embeds

Facebook

Alex's Lemonade Stand Foundation emerged from the front yard lemonade stand of cancer patient Alexandra “Alex” Scott...

Posted by Alex's Lemonade Stand Foundation on Monday, February 29, 2016

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