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Alex's Lemonade Stand Foundation Blog

Held each September, Alex’s Million Mile is a month long fundraising challenge to benefit childhood cancer research. Whether you are a casual walker or jogger, an avid cyclist or a marathoner, YOU can make a difference in the lives of children fighting cancer.

by Trish Adkins, ALSF

Held each September, Alex’s Million Mile is a month long fundraising challenge to benefit childhood cancer research. Whether you are a casual walker or jogger, an avid cyclist or a marathoner, YOU can make a difference in the lives of children fighting cancer. 

This year, you can help raise $1 million and fund thousands of hours of innovative research and give hope to children waiting on cures. One million dollars is a huge goal, but together we can do it! To help you out, we’ve assembled some of our favorite ways to fundraise! 

1. Join Alex’s Million Mile 2017! It all starts here with your registration. You can join a team, start a team or sign up as an individual.  

2. Make the first donation. When you sign up, set your fundraising goal and make the very first donation. Your donation will inspire others to give. 

3. Set a goal and make a plan for how to achieve it. Our accountant Rob Schuster shared his tips for reaching his AMM financial and mileage goals here.

4. Be Bold! Go Gold! Wear your favorite Childhood Cancer Awareness t-shirt (available in our gift shop!) and when people comment on your attire, tell them all about your team and your fundraising goals. 

5. Ask friends to sponsor you for every mile you go. Set your mileage goal at registration and ask friends to donate 50 cents or $1 per mile!

6. Maximize company matching programs. Several companies match employee donations to their charity of choice. Check if your company matches donations and ask other supporters to do the same. 

7. Motivate yourself to raise more by looking at our leaderboard. A little friendly competition between teams is a great motivator! Check the leaderboard to see where you stand!

8. Host a Lemonade support and gear (SAG) stop. The hot summer is the perfect time for a lemonade stand SAG stop! Host a stop in the middle or end of your running group’s weekly run and ask for donations for your team. This is also a great way to grab some more team members. 

9. Set up a competition within your team to do the most fundraising before September 1. Make the prize a home cooked meal for the winner or lawn mowing services or simply bragging rights.

10. Share on your social media. Set your goal and share on your social media pages with your entire network. Be sure to include the link to your Alex’s Million Mile donation page. 

11. Host a restaurant fundraiser. Ask local restaurants to host a fundraising night and donate a portion of the day’s sales to your team. 

12. Have a direct sales party! Everyone knows someone who sells makeup or jewelry or leggings or candles! Ask your direct sales friends to host a fundraiser and donate the host rewards to your team. 

13. Get baking! Host a bake sale at work or at your children’s daycare, day camp or school. 

14. Ask and inspire your friends, colleagues and family. Send out an email about your goal and ask for donations. Tell your network the story of Alex Scott, inspire them with other childhood cancer hero stories and share why childhood cancer research is important to you. 

15. Host a neighborhood lemonade stand! Plan and schedule a lemonade stand in your front yard, at a park or at a community event! Lemonade stands are a great way to raise awareness, funds and recruit more teammates.. 

Want more great ideas? Check out our Alex’s Million Mile hub on the website. We can't wait to see how far we will go together! 

Categories: 
Alex's Million Mile
Ewing's Sarcoma is the result of a single oncogene called EWS-FLI1

by Trish Adkins

It all starts with what seems to be normal pain and a bump. 

To a parent, their child is just complaining about something painful on their arm, leg or pelvis. The pain worsens. The bump lingers. And after many visits to the doctor, a diagnosis is finally made—Ewing’s sarcoma, the second most common type of childhood bone cancer

What appears on an MRI as a large tumor in the bone and growing into the adjoining tissue of the body, is really the result of one of the tiniest parts of the human genome—a single abnormal oncogene, known as EWS-FLI1. It is this oncogene that orchestrates a single cell’s conversion into an Ewing’s sarcoma tumor.

Turning off this oncogene may lead to a cure for Ewing’s sarcoma. The only trouble is that scientists continue to struggle with how to turn it off.

Trading Places: Chromosomal Translocation
Prior to the discovery of EWS-FLI1 in 1992, misdiagnosis was common because the cells of Ewing’s sarcoma and other cancers looked similar under the microscope. Now, doctors know that a tumor is Ewing’s sarcoma if EWS-FLI1 is present in the patient’s cells.

EWS-FLI1 is the result of a complicated and fascinating process called chromosomal translocation, which happens when a portion of one gene trades places with a portion of another gene and causes an abnormal chromosome fusion within a single cell in the body. Once created, EWS-FLI1 begins a very precise process of turning other genes on and off in a specific pattern to drive the growth of Ewing’s sarcoma. Tumors typically occur in the bones, but they can also arise in the connective tissue or even sometimes within the organs in the body. 

For the majority of children diagnosed with Ewing’s sarcoma, the disease is localized and has a 70% chance of being cured. For the other children with metastatic disease that has spread from the original site, a cure can be elusive and only 20% of these children will survive their cancer.

Removing EWS-FLI1 from the cells of the body seems to be the logical cure. In the lab, researchers are able to remove it, causing the tumor cells to die. So, why can’t doctors simply turn off this oncogene in children battling Ewing’s sarcoma?

That, says Dr. Stephen Lessnick, a member of the ALSF Scientific Advisory Board and physician-scientist at Nationwide Children’s Hospital in Columbus, OH, is the million dollar question.

“We need to unlock the puzzle by using research to find the critical pieces of information that show how this oncogene causes Ewing’s sarcoma,” said Dr. Lessnick. “Once we know more about how EWS-FLI1 works, then we will be able to figure out exactly how to block its function.”

Finding Drugs That Stick
There are several important discoveries, powered by ALSF-funded researchers, that are moving them closer to unlocking this puzzle. Dr. Lessnick points to two approaches that are working to end the reign of EWS-FLI1. 

One approach is to target the oncogene itself (or more properly, the protein that is made by that oncogene). For years, this has been challenging. For a medication to work, it has to stick to something useful inside the cells, according to Dr. Lessnick.  “Molecularly-targeted” childhood cancer drugs that work find a tiny pocket in the protein, settle into that spot and prevent that protein from working properly thereby ending its ability to cause cancer cell growth. 

Unfortunately, EWS-FLI1 is not thought to contain any pockets for a drug to be effective. However, Dr. Jeffrey Toretsky, a researcher at Georgetown University and recipient of an ALSF Innovation Grant is currently in a Phase 1 trial of a drug that appears to block some of the function of EWS-FLI1 by sticking to it via a yet-to-be-discovered mechanism.

Another approach, which Dr. Lessnick is studying, is to target the other enzymes that EWS-FLI1 itself sticks to and uses to drive the growth of Ewing’s sarcoma. One of these enzymes, LSD1, works in concert with several different oncogenes, including EWS-FLI1. Using a drug that was created to target LSD1 in breast and prostate cancers, Dr. Lessnick and colleagues have demonstrated that the drug kills Ewing’s sarcoma cells in the laboratory setting.  He believes this could be an important breakthrough in the treatment of metastatic and relapsed Ewing’s sarcoma. Working in collaboration with other scientists, Dr. Lessnick is close to bringing this therapy to clinical trial.

“Continued research and collaboration are so critical to advance our search for cures,” said Dr. Lessnick. “No one lab has the full complement of expertise to deliver a cure singlehandedly. It’s only by working together that we will find answers and cures.”

Read more about Ewing's sarcoma and ALSF funded projects here

Categories: 
Research
Hosting a 5k for childhood cancer research is a fun and easy way to help children battling cancer!

 


by Addie Martelli, ALSF

While lemonade stands are the foundation of ALSF, there are other fun and creative ways our supporters can raise money for childhood cancer research. One of those is by hosting your own 5K Race. I know it sounds like quite the undertaking, but that is exactly what we thought when ALSF planned its first Lemon Run 5K in 2009. However, eight years later it is our largest special event and an incredibly fun, family-friendly way for people to rally around the cause and support those affected by childhood cancer. Below are five tips to get you on your way to hosting a 5K in your community.

1. Find the right location. Figuring out where to hold this event can sound daunting, but try and think of a place where you would want to run or walk yourself. Maybe a park, a trail along the river or even a sports field/stadium in your community. You probably will want to avoid a neighborhood or area that would involve too many road closures. Permission from your town and certain permits may still be required, but you would be surprised by how many places you can turn into a 5K course. Once you find your spot, call your township or city offices and find out how you can get the permissions you need! 

2. Promote, promote, promote. You can’t have an event without people. Print out marketing materials like signs, fliers or postcards and ask local businesses to hang them up or keep a stack at their register. Social media is also a great way to get the word out. Post on Facebook, Twitter or Instagram and be sure to email all of your friends to encourage them to spread the word. Most people learn about our Foundation events through word of mouth, so the more people you tell, the better.

3. Don’t be afraid to ask. You would be surprised by how many people want to support community events. Go around to your local businesses, friends and family to tell them about the event and ask for donations of any kind. Some may donate money, but others may offer up food and beverage donations, gift cards or other services you can use.

4. Make it special. Hopefully, your 5K will turn into an annual event, so you want to keep people coming back. Make the day memorable for participants by including elements like giveaways, food, music, t-shirts and even have people cheering along the course. Although we have been hosting our 5K for years, we are always looking for what other races are doing to make the event an amazing experience for all involved. Do some research by participating in other local races and find 5Ks online to get fresh ideas about how to enhance your event.

5. Bring it back to the cause. Make your event in honor or memory of a child with cancer and encourage others to run or walk to benefit someone they know who has been affected. A lot of people don’t know what they can do to help when they learn that a family member or friend has been diagnosed. Participating in fundraisers like a 5K is a great way to show a childhood cancer hero your support and raise critical funds for research. 

Bonus Tip: Make sure there is something for everyone! Not everyone is a runner. Offer the option of walking the course as well. Also, a kids’ dash is always a hit with the little ones. And, as long as the location allows it, make your race stroller and dog-friendly so that even the smallest or furriest of supporters can be a part of the big day.

Addie Martelli is the Director of Special Events for ALSF. Since starting part-time in 2006, Addie has helped organize over 60 special events, including the Lemon Run, Philadelphia's most inspiring, cancer-fighting 5K! Register for Lemon Run here. 

 

 

 

Categories: 
Special Events
Two-time childhood cancer survivor Maya Rigler has raised over $410, 000 for research!

13-year old Maya Rigler (above with her family at Alex’s “Original” Lemonade Stand) has fought two different types of childhood cancer and managed to raise enough money for over 8,000 hours of childhood cancer research. And she is not stopping—not until there are cures for all children. ​

 

by Maya Rigler, Childhood Cancer Hero

Alex’s Lemonade Stand Foundation has been a part of my life for as long as I can remember.  Although I never met Alex, her story has always impacted me. We both fought cancer and were even treated at the same hospital with some of the same doctors. Her home is just a few miles away, and she’s been a hero of mine for as long as I can remember.

Just before my second birthday, my doctor discovered a mass in my stomach. I found out I had a type of cancer called Wilms' tumor in my kidney. I had to undergo chemotherapy and radiation for eight months. I don’t remember that much of it, mostly sitting in hospital rooms and watching Elmo while getting chemo. I had to miss a lot of preschool for treatment! I had to get surgery to remove one of my kidneys since it had a tumor on it, so I’ve always had to drink a lot more water than my friends. During treatment, my family was introduced to ALSF. 

My two younger brothers and I hosted lemonade stands every year. Each year, we brought the money from the lemonade stand to Alex’s “Original” Lemonade Stand at Penn Wynne Elementary School. It became an annual family tradition. I would have never imagined that the disease I barely remembered would soon become a much greater part of my life.

When I was ten years old, my parents took me to the doctor’s office because something seemed off. I was taken to Children’s Hospital of Philadelphia (CHOP) to be checked out. The doctors told me it looked like I had a mass in my stomach and that we just needed to find out what was going on. I heard the doctors use the term “mass,” I immediately gave it a name - Bob the Blob! After a week, we found out that Bob the Blob was a type of cancer called Ewing’s sarcoma in my pancreas. Within days of being diagnosed, I had countless gifts arrive at my hospital door. So many people were extremely generous, but I thought about the other patients on the oncology floor, who might not feel the same support that my family was feeling. My cancer had a cure, but some of theirs didn’t.

I decided to start up a virtual fundraising page on Alex’s Lemonade Stand Foundation’s website. In just a few weeks, we were up to $100,000! The immense happiness I got from knowing I could make a difference, even at such a young age, was way better than any presents.

I began chemotherapy and six weeks of radiation. I was in and out of the hospital for many days at a time, and I had different surgeries. I saw many doctors, too. One time, a doctor had on an Alex’s Lemonade lanyard. I jumped and asked her how she was involved. The doctor told me that she was a researcher and that ALSF helps fund her research to help find a cure for childhood cancer! The doctor tested my tumor and was able to tell me that my two cancers were unrelated. It is amazing to know that ALSF helped make a difference in my own treatment! 

Even with support, love and a strong community surrounding my family, having cancer at any age is really hard. I learned so much about helping others while I was sick. It was incredible to see the donations pouring in from everyone who donated, no matter how much, to help find a cure for this horrible disease. I was so thankful, and soon we had reached $250,000. I was in awe of how much of a difference one person could really make. Through things like Instagram, Facebook and the ALSF website, I was able to share my story. Once the idea caught on, the local news covered my story and the stand took off even more! It was amazing to see what could happen when you ask for help. My friends and family began hosting lemonade stands on their own to help benefit my page. As of today, I have raised a total of $410,010!! 

If you’re reading this and think one person can’t make a big difference, think about what Alex Scott said “when life hands you lemons, make lemonade.”

Maya Rigler is 13-years-old and a two-time cancer survivor. In 2016, she was honored at the Lemon Ball as Stand Host of the Year. 

 

 

 

 

 

Childhood cancer survivors have an increased risk of cardiac dysfunction and a risk of poor heart health

by Trish Adkins

ALSF-funded researcher (Innovation Grant 2009 and Epidemiology Grant 2013) Dr. Richard Aplenc of Children’s Hospital of Philadelphia is working to understand the underlying causes of cardiac dysfunction in children battling acute myeloid leukemia (AML). Five ALSF –funded POST Grant students have also worked on this research in the Aplenc Lab: Yang Ding, Alexandra Blumer, Joe Horowitz, Julianna Mann and Elizabeth Goodman. 

In the treatment of acute myeloid leukemia (AML), most cardiac side effects come from a type of chemotherapy called anthracyclines. Anthracyclines are used pretty extensively in treating pediatric cancer. In general, the more doses of anthracyclines a child receives, the greater the risk of long-term side effects, such as cardiac dysfunction. These long-term side effects of anthracyclines have been researched extensively. However, the short-term cardiac side effects, which can affect some children during treatment, have been less researched. 

ALSF-funded researcher and Scientific Review Board member Dr. Richard Aplenc is working to understand the underlying causes of short-term cardiac dysfunction. These side effects could happen immediately or within the first year of treatment with anthracyclines in children battling AML, a form of leukemia that requires more intensive chemotherapy.

Dr. Aplenc’s lab is working on a genome-wide genotyping effort to discover the genetic variations that change the risks of relapse, life-threatening infections and heart complications in these children. He also leads several efforts to use administrative data and sets out to improve the care of children with AML, particularly focusing on antibiotic and intensive care use.

Long-term cardiac side effects of anthracycline treatment can include an increased risk of heart attack and cardiomyopathy. In the short term, heart attacks do not happen, but some children experience cardiomyopathy, which is a dysfunction of the heart muscle. The heart muscle does not squeeze effectively, which can lead to a myriad of problems including congestive heart failure. This short-term side effect can lead to treatment delays, jeopardizing its effectiveness.

Dr. Aplenc is also studying the link between blood infections and short-term side effects of anthracycline treatment in children battling AML. Blood infections can also trigger cardiomyopathy. However, this link is poorly understood. 

The first part of his research will:

  • Define the clinical experience of children with AML who experience a decrease in heart functions
  • Define the cardiac risk factors in kids who have a blood infection versus those who do not have a blood infection
  • Understand the pathophysiology that leads children with an infection to have a worse infection
  • Determine if decreased heart function affects the risk of AML relapse 

The second part of his research is using DNA sequencing to understand if changes in a patient’s DNA could be related to their risk of cardiac side effects. 

“I want to be able to provide patients and their families with accurate estimates of cardiac toxicity risks in AML, so when a physician sits down with a family, they can accurately predict treatment outcomes and manage risk,” said Dr. Aplenc. 

Categories: 
Research

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