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How far would you go for childhood cancer? Would you help us on this journey to one million miles this September?

Each September, ALSF hosts Alex’s Million Mile, a month-long fundraising event that builds  awareness for Childhood Cancer Awareness Month.

Last year, more than 15,000 people logged miles and raised money for childhood cancer research. Everyone can make the most of their steps (and miles!) in September by running, walking and biking to collectively exceed one million miles! 

This summer, we are making a video public service announcement to spread the word and get more people to join us on the Alex’s Million Mile journey  and we need your help!

Send us a 15-30 second video clip and let us know how far you would go for a cure for childhood cancer. Tell us why Alex’s Million Mile is important to you—and how you plan to help go one million miles in September! 

Winners will have their video clip featured in the PSA and receive a  special, limited edition 2016 Alex’s Million Mile t-shirt!

Ready to go? Here’s what you need to:

  1. Create your video. Selfie videos are encouraged!
  2. Post your video on our ALSF Facebook page  or e-mail the video to [email protected]

Need some more AMM inspiration? Check out these amazing stories from our childhood cancer heroes and SuperSibs.

Childhood cancer heroes and their families often travel hundreds and sometimes thousands of miles to receive treatment. Check out how far these children traveled! How far will you go?

Hero Kaela Cruz lost her leg to osteosarcoma when she was just 5 years old. But nothing stops Kaela! She is a tri-athlete, a pianist and an amazing girl who inspires  everyone she meets! 

SuperSib and Alex’s Million Mile participant Meg Schwehm finished her first half marathon in 2:22, just one week before her 8th birthday. Meg runs for her little sister Morgan who is 5 years old and is currently in remission from stage 4 high-risk neuroblastoma. When approached about running a half marathon, Meg’s father Jeremy told her that it  would be too hard. Meg said that if Morgan could go through two years of treatment, she could run 13 miles.

Why do you support AMM? We can't wait to see what you come up with! But, don’t delay! Submissions are due on or before Tuesday, July 5, 2016.

Open to people 18 years and older or minors with parental permission. By submitting your video to ALSF, you give us permission to use it in an AMM PSA to be distributed to our supporters via email, website and social media channels. Multiple entries are welcome.

Happy Alex’s Lemonade Days!

This weekend, during Alex’s Lemonade Days,  36 families across the U.S. will take a “stand” against childhood cancer as Lemonade Days Hero Reps. The 36 Lemonade Days Hero Reps symbolically represent the 36 children diagnosed with cancer every day in the United States. 

Each of the 36 families has been personally impacted by childhood cancer. During Lemonade Days (June 10-12), the families will spread awareness about the ongoing childhood cancer fight by sharing their personal journeys, hosting lemonade stands and enlisting community members to host their own stands. 

Childhood cancer occurs regularly, randomly and spares no ethnic group, socioeconomic class or geographic region. But, these 36 families are living proof that everyone can take a “stand” and make a difference in the fight against childhood cancer. 

“Our family knows firsthand just how personal the fight against childhood cancer is,” said Liz Scott, Co-Executive Director of ALSF and Alex’s mom. “Our daughter would be honored to know that these 36 families will continue her legacy by literally taking a stand against childhood cancer and inspiring those in their community to come together toward finding cures.”

Alex’s legacy taught all of us that anyone can make a difference—one cup and one lemonade stand, at a time. 

Every donation makes a difference and adds up to valuable funding for innovative research. Every $50 raised equates to 1 hour of cutting-edge research in all types of childhood cancer. 

This weekend, no matter where you go, be on the look out for an Alex’s Lemonade Stand! Our 36 Hero Reps are located coast-to-coast. Meet three of these inspiring families:

 

Brady Williams, from Oakfield, NY, a 9-year old neuroblastoma survivor
“Brady is the best brother in the world,” says his brother, Eli. Brady Williams, diagnosed with neuroblastoma in 2009, is one in a set of triplets: Cara and Eli, ages 9. They also have a younger sister, Allison age 7. The Williams family wants others to know that the impact of childhood cancer does not end when treatment ends. But Brady is optimistic saying, “Someday I will help make the world a better place!”

Lina Rak, from Portland, OR, a 16-year-old neuroblastoma survivor

Linda Rak knows a thing or two about turning lemons into lemonade. She has turned a side effect of cancer and treatment – her short stature – and turned it into a positive. She is the coxswain of her rowing team, spending 20 hours a week at the boat house! Lina has aspirations to be on the US National Rowing Team. As a family, the Raks like to travel, try new foods, experience new cultures and play with their Airedale Terrier, Duke.

Kylie Newlin, from Waxhaw, NC, a 14-year old acute lymphoblastic leukemia survivor
Colleen Newlin describes her daughter Kylie as an inspiration and says she adds sparkles to her friends and family's lives. Kylie was diagnosed at 8-years-old with acute lymphoblastic leukemia. She was in treatment for two and a half years. She relapsed at age 12. She is now off treatment, back to school and starting the new phase of her life, leaving sparkles wherever she goes. As a family, the Newlins like to go to the beach, play with their dogs and go to lacrosse and baseball games. 

You can meet more of our hero reps here. 

This weekend, no matter where you are, no matter what you are doing, take a few minutes to stop by a lemonade stand.

Don’t forget to snap a selfie at lemonade stands this weekend! Share across social media and use #LemonadeDays. For more information on Alex’s Lemonade Days and to sign up to host a lemonade stand visit AlexsLemonadeDays.org

Categories: 
Lemonade Days

Dr. Jeffrey Huo, a first-time ALSF Young Investigator grant recipient and an instructor of oncology at John Hopkins University, authored a report on helping a young girl with relapsed T-cell leukemia, for which there are currently almost no treatment options. The young girl was diagnosed at 4-years-old and received a traditional matched bone marrow transplant from her sister. Six months later, she relapsed. Her team of doctors at Hopkins, including Dr. Huo and two of his mentors (also previously supported by ALSF Young Investigator grants), knew something new was needed to give the young girl a chance. 

Traditional bone marrow transplants replace a patient’s cancer-ridden immune system with a genetically matched immune system from a sibling or a volunteer donor. However, it is thought that a cancer which learned to hide from the patient’s original immune system can also, sometimes quickly, hide from the new genetically matched immune system, leading to relapse. In response, researchers at Johns Hopkins and other centers developed new strategies to perform haploidentical (half-matched) bone marrow transplants from parents or siblings. Since the new haploidentical immune system only genetically half-matches the original, cancers have a harder time hiding again from destruction. This graft-vs-tumor effect can be further enhanced if necessary with booster shots called donor lymphocyte infusions. However, no one reported trying trying this before in T-cell leukemia. The family bravely decided to try this new approach, in hopes that it could save their daughter’s life. 

After undergoing a haploidentical bone marrow transplant and two successive donor lymphocyte infusions, the young girl has been back in school for three years and is now free of disease. Dr. Huo and his mentors co-authored a scientific paper published in Pediatric Blood & Cancer about her cure, giving hope to other young patients faced with the same deadly dilemma.

Dr. Huo was inspired to become a physician-scientist by the doctors who saved his cousin’ life after he was diagnosed with childhood cancer. The grant from ALSF allowed him to join the faculty at Hopkins to continue his research and publish this exciting clinical works with his mentors. 

 

It is always a great time to host a lemonade stand! Here are five fast ways to make your lemonade stand a sweet success and help us raise funds for childhood cancer research! 

1. Get inspired and meet our 36 Lemonade Days Hero Reps! These 36 amazing families represent the 36 children diagnosed every school day with childhood cancer. Each  family has been affected by childhood cancer and is sharing their story, raising awareness and holding stands to support the fight. Read their stories, stop by their stands and help raise awareness about why childhood cancer research is so critical! 

2. Get your most important supply: lemonade! Use our handy formula to get just the right amount of lemonade. It takes 2 minutes to sell and serve one 8 oz cup of lemonade! To figure out how much you need, simply divide the amount of time (in minutes) that you will hold your stand by 2. Then, multiply that result by 8 oz (the average size of a cup!). For example, if you held a 60 minute lemonade stand;  you would need 30 cups and 240 ounces of lemonade. 

3. Gather your team! Lemonade stands are a blast when you have a team of friends and family involved. Enlist your baker pal to make some treats and assign your social butterfly the job of spreading the word and greeting lemonade stand customers. Tap into the talents of your friends and watch your lemonade stand grow! 

4. Decorate! Use all the great ALSF items in your stand. Also, visit our Downloads Toolkit for great printable materials that can make your stand sign. Pick up yellow and blue balloons, a bag of lemons and create homemade signs that make your lemonade stand stand-out! 

5. Plan some fun at your stand! Go beyond just lemonade and have temporary tattoos, a sour-lemon face selfie station, coloring sheets and other fun games for your kids. Check out our Pinterest page for fun craft and activity ideas.

Don’t forget to share your stand information with everyone you know. Update your stand page with all your great plans, share on social media and use the hashtag #LemonadeDays!  Plus, here are some more great lemonade stand tips for your big day. 

Haven’t planned your 2016 Alex’s Lemonade Days Lemonade Stand?  Never fear, you can sign up online for Alex’s Lemonade Days 2016 or pick any day to host a stand. 

Categories: 
lemonade stand

Everyday, 36 children in the United States are diagnosed with cancer. 

This year, during our annual Alex’s Lemonade Days weekend, you can join thousands of supporters from coast to coast to help find cures for children battling childhood cancer.

Here’s how you can help:

  • Sign up to host a lemonade stand in your front yard, at work or anywhere you choose during Alex’s Lemonade Days from June 10-June 12
  • Can’t host?  Head over to our website and find a stand in your neighborhood and swing by for a cup of lemonade or donate online!
  • Spread the word! Share this image and let everyone that everyday 36 children are diagnosed with cancer and that together, we can each make a difference and find cures for all children!
  • Learn about our 36 Lemonade Days Hero Reps from all across the country, selected to represent the number of children diagnosed with cancer every day. 

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. 

Categories: 
shareable

Hi!

What do you stand for? I stand for finding a cure for all kids with cancer. I'm Bailee Madison and as Alex's Lemonade Stand Foundation's Youth Spokesperson, I've been helping to fight childhood cancer since 2010.

Today, I'm asking you to take a stand and hold a lemonade stand during Alex's Lemonade DaysJune 10-12. It is easy and fun and the money you raise from your lemonade stand will bring hope and help to kids with cancer. It's easy and a fun way to spend time with your family and friends.  Register online at
 
Join families all across the country, like the Millefamily from Indianapolis, Indiana. These siblings and theirparents are supporting Alex's Lemonade Days and holding a lemonade stand in honor of their sister Jillian and all the other kids affected by childhood cancer.
 
Remember, you're never too young to make a difference!
 
 
Your friend,
 
Bailee 
 
Bailee Madison is ALSF's Youth Spokesperson and has taken an active part in fighting childhood cancer by hosting and attending numerous lemonade stands and events. You may recognize her from her roles in the TV series The Good Witch, The FostersTrophy Wife and The Wizards of Waverly Place.

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. 

 

Social embeds

Facebook

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.  

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