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Alex's Lemonade Stand Foundation Blog

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
Arnav is battling osteosarcoma, the most common form of childhood bone cancer.


by Adam Paris, ALSF  

Editor’s note: Previously, we shared Part 1 of Arnav’s story. If you missed that installment, read it here.

“Dad, so you’re telling me I beat half the nation’s best on a half-broken leg.” 

Arnav was riding home from the doctor after being diagnosed with osteosarcoma, the most common type of childhood bone cancer. The cancer was in his left leg. 

Arnav, as always, had what his father, Nitin, calls “relentless positivity.” 

His parents, however, struggled with their new normal. 

“Having to learn that he had cancer and that his leg would need surgery, just shattered my wife and me,” said Nitin. “We couldn’t put ourselves together.” 

Even with an unknown future looming, Arnav kept his relentless positivity. His parents began searching for an osteosarcoma specialist in the area, boiling down their treatment options to three hospitals. They chose Children's Hospital of Philadelphia (CHOP) and began preparations for Arnav's treatment, which began with pre-surgery chemotherapy.

Much to Arnav’s relief, the consulting surgeons told him that his leg wouldn’t need to be amputated. They told his family that removing the part of his leg affected by the cancer would suffice, but the particulars of the surgery would depend on Arnav’s future goals.

The surgeons devised two plans, one where he would receive an artificial knee that would recover quickly but restrict his athletic endeavors or he could embark on a year-and-a-half recovery time with a surgery that entailed reconstructing his knee. The second one meant that Arnav would be able to bike again, so his response was obvious.

“His aspirations were definitely to get back on the bike,” Nitin said. “We know he wants to get back on the cycle, we know he wants to compete and we’re fully supportive of whatever he wants to do.”

Arnav's surgery in November 2016 entailed reconstructing the leg with a donor bone, attaching fibula from the right leg, strengthening the entire leg by embedding steel rods, reconstructing the knee and then all stitched together through microvascular surgery, a type of surgery used to reattach the smallest blood vessels, as the final step of a 16-hour process.

Arnav’s pursuit of cycling again continues to pedal him forward and he uses that finish line as an inspirational endpoint for his journey.

“It’s my passion and it’s gotten me through this,” Arnav said. “Just knowing that I can race again after this.”

Arnav completed his final chemotherapy session in late April, which means the reconstructed bone will finally begin to heal. Throughout this entire process, there’s been an outpouring of support from his community, family and friends to help keep him going. 

“There were so many people we don’t know who have come and said, ‘Whatever you need, we want to help,’ and they have helped. It is amazing,” said Nitin. “Having a whole village around you is very important because you can’t do it by yourself.”

Even stronger than the rallying community is the bond between Arnav and his twin brother, Dhruv.  Already connected by their cycling commitment, this entire experience has brought the two even closer.

“Dhruv has not even once said, ‘I have this party to go to,’ or ‘I have this fun event with my friends,’ he has canceled all of those in a heartbeat and said I want to be with my brother,” said Nitin. 

“I think our bond really got stronger because he was really the only person I could play with,” said Arnav. “I think that just made our bond thousands of times better and it just grew tremendously.” 

The family’s resolve remains powered by Arnav’s courage and relentless positivity. That’s been the biggest takeaway for Nitin, who urges other families to maintain a positive outlook to help them through difficult times no matter what. Arnav knows that sharing his story of hope through Alex’s Lemonade Stand Foundation will help plenty others facing the same challenges as him.

“I think that getting the story out there so more people will know that there’s still hope and there’s a light at the end, that’s awesome,” said Arnav.

Going forward, Arnav’s dream is getting back on that bike, something he hopes to do by December. Beyond that point, he remains unsure, even if his parents may be pushing him towards becoming an osteosarcoma surgeon. 

“Who would be more empathetic to their patient than he could be?” Nitin said.

Missed the beginning of Arnav’s story? Read Part 1 here.

This September, Arnav and his family will join Alex's Million Mile, and help us go 1 million miles and raise $1 million for childhood cancer research! You can join, too! Get the details here.

 

 

 

 

 

 

Categories: 
Alex's Million Mile
Osteosarcoma claimed the leg of this young cyclist. Read about his story.

 

 

by Adam Paris, ALSF

“No, I want to compete,” Arnav said as he picked his bike up off the ground.

Despite having just fallen off his cycle and shattered his helmet, Arnav was insistent on finishing the cycling competition. Race officials cautioned him against continuing, but there was no stopping the persistent teen. Off he went, finishing 9th in the race despite his early tumble. 

That same will to barrel forward, no matter the obstacle, would drive Arnav during a far more grueling fight of his life against childhood cancer. 

At the age of 14, Arnav was diagnosed with osteosarcoma, the disease that would cost him the ability to ride. It’s the most common form of childhood bone cancer, although there are only 400 known cases of osteosarcoma in the United States.  The disease develops from the cells that help create growing bones and happens more frequently in teenage boys in the midst of a growth spurt. For Arnav, a National Honor Society member and winner of the Pennsylvania Academy of Junior Science competition, the diagnosis took away one of his passions in life. 

You can’t ride a bike if you don't have a working leg. 

The Wheels Start Turning
Biking was an integral part of Arnav’s life since he was 8. Ever since his father picked up the sport to support a friend with multiple sclerosis, Arnav and his twin brother Dhruv were enamored with the sport. Later, their science teacher and family friend noticed the duo cycling and suggested that Arnav and Dhruv train at the local outdoor professional cycling track. The obsession was instantaneous and their passion and brotherly bond only grew.

“It made us both more competitive and want to get better than the other; so we worked harder and harder,” Arnav said. “I think it’s good to have some friendly competition around.”

Arnav and his brother competed at the local, regional and even national levels. Arnav’s favorite competition is endurance based sprint races. He won a state competition and beat out cyclists in age groups older than him. Even after riding in a Northeast regional race that encompasses 13 states, Arnav and Dhruv weren't satisfied with accolades on a regional level. Both of the brothers eyed a place in the national competition and signed up for the USA Cycling Elite & Junior Track National Championships. 

A week or so before the Championships in late July 2016, Arnav started mentioning his leg bothered him. The sore calf and lower leg led to a noticeable limp at points, but that seemed typical for an athlete whose training regimen required four to six hours of intense training per day, six days a week. The typical rest, ice, compress and elevate (R.I.C.E.) tactic proved ineffective at curbing the pain. Despite the injuries, Arnav persisted and went to Nationals brimming with optimism. On the day of the competition, more than 50 athletes participated in his age group starting with the initial heats. From there, Arnav emerged to finish a respectable 18th place and his brother wound up 10th overall. Despite the joy at his accomplishment, Arnav’s pain didn’t disappear.

First, a masseuse massaged the aching limb and suggested they see a doctor. A week later, Arnav saw his general physician, who quickly referred them to a sports medicine specialist. Upon looking at his leg, the doctor said X-rays and an MRI would be necessary. Within days, they discovered the osteosarcoma in Arnav’s left leg. The disease would require extensive surgery on his leg. 

Arnav was forced to pump the brakes on his cycling career and face his cancer diagnosis with the same relentless spirit he gave to cycling.

Want to read more of Arnav's story? Read part 2 here.

This September, Arnav and his family will join Alex's Million Mile, and help us go 1 million miles and raise $1 million for childhood cancer research! You can join, too! Get the details here.

 

 

 

 

 

Categories: 
Alex's Million Mile

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