Wednesday, September 17, 2014

Throwing Down the Gauntlet against Childhood Cancer

Here we are already halfway through SeptAMMber (not a typo, just our special Alex’s Million Mile ‘AMM’ lingo) and we couldn’t be more pleased with the outpouring of support during this important time of year, National Childhood Cancer Awareness Month. Alex’s Million Mile – Run. Walk. Ride. has inspired thousands of people across the globe to log the miles they run, walk or bike ride throughout the month, but for those participating – it’s about so much more than just keeping a tally of miles completed. People are truly challenging themselves and others to go that extra mile (literally) to get us closer toward our collective goal of reaching 1 million miles.

Challenges are nothing new here at Alex’s Lemonade Stand Foundation. In fact, Alex Scott herself was the one who inspired Alex’s Million Mile’s lofty goal as 10 years ago this past summer at just 8 years old, she challenged the entire nation to hold lemonade stands to help her reach her goal of raising $1 million for childhood cancer research. We figured if Alex could reach and surpass her million dollar goal, surely we can too.   

Of course, it’s hard to say the word “challenge” these days without thinking of one of the various challenges making their rounds on social media. We’d be remiss not to mention the widely successful ALS ice bucket challenge that raised an incredible amount of well-deserved funds (and awareness) for Lou Gehrig’s disease, and in turn,  has inspired some ALSF supporters to come up with their own social media challenges (with a lemon twist of course).

There’s Brielle Barber, a 4 year old little girl who likes princesses, butterflies and Strawberry  
Shortcake, but Brielle is also courageously fighting brain cancer. In her mom’s words, “She takes on every challenge that comes her way with fierceness and bravery.” Brielle and her family have spearheaded the Lemon Shot Challenge that asks people to drink a shot of straight lemon juice (and post their video on social media) or make a donation to ALSF. Brielle’s efforts have really taken off and even attracted support from some high profile participants including members of the Philadelphia Flyers and Philadelphia Phillies, and has raised an incredible $20,000 (and counting)!



The Lemon Challenge is another social media challenge popping up where people are challenged to pucker up and suck on a lemon slice or donate to ALSF because as one supporter notes quite frankly, "childhood cancer sucks."



Finally, others have embraced the Whipping Childhood Cancer Challenge where, you guessed it, people challenge others to take a whipped cream pie in the face and donate $7 to their favorite childhood cancer charity. The number 7 comes from the fact that every day, 7 kids die from cancer in the U.S.
Click here to see the video of Joey Montalbano take the Whipped Cream Challenge in honor of his 4 year old son Marshall who is fighting leukemia.

When it comes down to it, whether you’re participating in Alex’s Million Mile or taking part in one of these fun social media campaigns – we challenge you to get inspired and do something this month  to raise awareness of the need to support childhood cancer research. Let’s do this!

Tuesday, September 16, 2014

Guest Blog: 2014 James Beard Award Winning Outstanding Chef Nancy Silverton Shares Why she Supports L.A. Loves Alex’s Lemonade

Sure, we may be focused on Alex's Million Mile this September, but there are plenty of other events benefiting Alex's Lemonade Stand Foundation this month including the incredibly popular L.A. Loves Alex's Lemonade culinary event happening this Saturday, September 20 in Los Angeles. A limited amount of tickets remain to this star-studded event hosted by the trio of Suzanne Goin, David Lentz and Caroline Styne where more than 40 renowned chefs from across the country serve up tastings of their delicious dishes. Chef Nancy Silverton of the Mozza Restaurant Group is one of these chefs who supports the event each year. Below she tells us why she supports ALSF and why you should get your tickets to Saturday's affair before it's too late!



Host Suzanne Goin and Nancy
Great food, much like a great cause, has the ability to bring people together and change the world. Really, it’s true. Case in point - five years ago, when my dear friends, Suzanne Goin, Caroline Styne and David Lentz, first told me about this idea that they had to bring together amazing chefs, mixologists and vintners from all over the country to Los Angeles, in support of Alex’s Lemonade Stand Foundation, my first question was - what is Alex’s Lemonade Stand? They proceeded to tell me about an event they attend in Philadelphia hosted by Marc Vetri and Jeff Benjamin of the Vetri Family of Restaurants, and a remarkable young lady named Alex, who set out to change the world, one glass of lemonade at a time.

Over the years, I have had the pleasure of getting to know Alex’s parents, Liz & Jay Scott, and the thousands of supporters (nationwide) that help each and every day in the fight against childhood cancer. To think that the Foundation, which started out as a simple front yard lemonade stand, has raised more than $80 million to help fund hundreds of childhood cancer research projects is simply amazing.

This year marks the 5th annual L.A. Loves Alex’s Lemonade event and while each event is fun as it gives me the opportunity to see friends from all over the world, the impact that it has on the fight against childhood cancer is truly what makes the day so meaningful. The event has helped to raise more than $1.75 million – that’s $1.75 million that will help to fund childhood cancer research, something that is incredibly important since it is vastly underfunded by the federal government, yet continues to take the lives of so many young people.


Matt Molina and Nancy
Besides the great food, drink and atmosphere – one of my favorite parts of the day is hearing from a family or child who has been affected by childhood cancer. To hear firsthand what these brave children and their family have to endure, and to think that I have the ability to contribute to research that could potentially save a child’s life simply by sharing my love for food – is extremely powerful and something I’m honored to do. In fact, members of the staff from the Mozza Restaurant Group have also embraced Alex’s vision of finding a cure and Chef Matt Molina participates in several of the ALSF culinary events held across the country.

I invite you and your family to eat, drink and help
contribute to cures at the 5th annual L.A. Loves Alex’s Lemonade event on Saturday, September 20, from noon-4pm. Be sure to stop by and say hello to the Mozza Team where they will be serving up Ribolita "Da Delphina” - yum!

Cheers,
Nancy

Friday, September 12, 2014

Clues Found to Cause of Leukemia in Infants




As we wrap up the week here, we wanted to share a great research update from one of ALSF's first 'A' Award recipients, Todd Druley, MD, PhD, from Washington University in St. Louis, recently discovered through his research that babies who develop leukemia during their first year of life appear to have inherited a genetic predisposition that can make them highly susceptible to the disease.


Unlike leukemia in older children, which can often be cured, infant leukemia is very rare and more difficult to cure. Doctors have been baffled why babies that are just a few months old can develop cancer since they have not lived long enough to accumulate a critical number of cancer-causing mutations. Dr. Druley’s research has shed a bit of light on this question. His findings indicate that babies appear to have inherited rare genetic variants from both parents that by themselves would not cause problems, but in combination put the infants at high risk of leukemia.

Dr. Druley wants to continue to study these inherited variations and learn more about how they can lead to leukemia. The hope is that it may be possible to use a technique called genetic editing to remove the harmful gene from the DNA of infants who are susceptible to leukemia, and replace it with a healthy version of the same gene, ultimately sparing babies and their families from a devastating diagnosis. 

Thursday, September 11, 2014

Hope on the Horizon for DIPG Patients - Meet Dr. Michelle Monje Deisseroth


Diffuse Intrinsic Pontine Glioma (DIPG) is the second most common malignant brain tumor in children. It's a particularly devastating diagnosis because there is no cure, and it is difficult to treat because the tumor cells grow in between and around normal, healthy cells. Most often, doctors cannot remove the tumor because in doing so they would also damage the healthy brain tissue around the tumor, which is critical to survival.  
  
Michelle Monje Deisseroth, MD, PhD
However, hope may be on the horizon. Michelle Monje Deisseroth, MD, PhD, an ALSF 'A' Award grantee from Stanford University, is studying a combination of two drugs to treat children with DIPG. Dr. Monje provided us with the update below on her progress:

With an essentially 100%, 5 year mortality rate, new therapeutic strategies for DIPG are in dire need. As a direct result of my ALSF funding, we have been able to screen our DIPG cell lines against many potential therapies. We have been performing single cell analyses of gene expression and, preliminarily, have found 3 molecularly-defined subpopulations of tumor cells. This work is ongoing. At the same time, we have been working to define effective treatment strategies for DIPG and this translational effort has resulted in a clinical trial proposal that we hope will come to fruition. Finally, as science frequently leads us down unexpected paths, we have found important microenvironmental interactions that promote the proliferation of both normal and malignant glial precursor cells, including DIPG.