Our Community Outreach Partner for September: The Truth 365

Over 15,000 kids will be diagnosed with cancer in the next 365 days. Cancer kills more than 2,500 children in our country every year.

The goal of The Truth 365 is to educate and mobilize millions of people through Facebook, YouTube, Twitter and other social networking sites. Their full-length documentaries and shorter films inform the public that there is a critical need for funding for childhood cancer research. Through increased awareness comes increased funding. You see, children *should be* our nations’ priority. Yet, the shocking lack of funding for childhood cancers indicates otherwise. We are sad to again be including this fact in our blog: the National Cancer Institute allocates only 4% of it’s cancer research budget toward childhood cancers. And 4% is simply not enough. Drug companies aren’t allocating research dollars either, as there are 16 major types of pediatric cancers and over 100 subtypes – all of which need to be approached differently. Much of the funding for new therapies are left to be raised by the parents, which is a burden they should not have to bear. Yet, they do, faced with no other options for helping their children. They bike, run, shave their heads, participate in ultra marathons — just about anything they can do — they will to raise money to give to advance research.

We would love for you to spread the word about CureFest, an amazing and FREE childhood cancer event in Washington DC! This year, CureFest will be September 15th and 16th, with the 1.8 mile walk on Sunday.

We are donating $1 from every haircut from both locations this September to The Truth 365. You also have an opportunity to help by donating at our front desk where you can fill out a Childhood Cancer Awareness Square to hang in our window to help us #GoGold this September! To read more about the shocking facts of childhood cancer, please read our blog post from last year.

childhoodcancersquare

Our Community Outreach Partner for August & September: The Truth 365

We cannot say enough good things about the work The Truth 365 is doing in the childhood cancer community. Their beautiful (and Emmy award winning!) documentaries and media campaigns (such as this breathtaking one of Kylie Myers) are bringing awareness to a cause that so desperately needs it. Through increased awareness comes increased funding. You see, children *should be* our nations’ priority. Yet, the shocking lack of funding for childhood cancers indicates otherwise. We are sad to again be including this fact in our blog: the National Cancer Institute allocates only 4% of it’s cancer research budget toward childhood cancers. And 4% is simply not enough. Drug companies aren’t allocating research dollars either, as there are 16 major types of pediatric cancers and over 100 subtypes – all of which need to be approached differently. Much of the funding for new therapies are left to be raised by the parents, which is a burden they should not have to bear. Yet, they do, faced with no other options for helping their children. They bike, run, shave their heads, participate in ultra marathons — just about anything they can do — they will to raise money to give to advance research.

We are encouraged by a few amazing breakthroughs in recent weeks. The RACE for Children’s Act became law, which will significantly increase the number of new drugs available to children with cancer as well as increase new research dollars flowing into childhood cancer research. And on August 30, 2017, the FDA approved a groundbreaking CAR T Cell Therapy for kids battling leukemia.

But there is more to do, which is why Salon Khouri will continue to partner with The Truth 365 #UntilChildhoodCancerIsExtinct in honor of Kate, Mathias, AlexGabby, Kyle, Gavin, Chris, Delaney, Casey, Declan, Isabella

We would love for you to spread the word about CureFest, an amazing and FREE childhood cancer event in Washington DC! We will once again be volunteering at the Crazy Hair Day booth! And this year, CureFest has some AMAZING headliners! Sabrina Carpenter, Caly Bevier (Simon Cowell’s Golden Buzzer pick from last year) and World of Dance qualifier Diana Pombo! Please share this page to let people know about the awesome talent lined up for this year and encourage them to join in being a voice for children battling cancer.

SabrinaCarpenter

 

 

We are donating $1 from every haircut from both locations in August and September to The Truth 365. You also have an opportunity to help by donating at our front desk where you can fill out a Childhood Cancer Awareness Square to hang in our window to help us #GoGold this September! To read more about the shocking facts of childhood cancer, please read our blog post from last year.

childhoodcancersquare

Our May Community Outreach Partner – and Project!

Our community outreach partner for May is two fold!TT365
First, we will be donating $1 from every haircut in May to the Childhood Cancer Dream Team of Pediatric Oncologists via the Truth 365. We love what The Truth 365 is doing in the childhood cancer awareness arena and, they are funding research grants that are helping multiple childhood cancers. In April 2016, The Truth 365 funded $440,000 in grants through a Collaborative Pediatric Cancer Research Awards Program that will fund groundbreaking research for the following childhood cancers: Medulloblastoma, Neuroblastoma, High Grade Glioma, Recurrent Brain Tumors, AML & ALL, Ewing Sarcoma, Fibrolamellar Hepatocellular Carcinoma, and DIPG. Research for childhood cancers is severely underfunded. In fact, the National Cancer Institute spends only 4% of its federal research dollars for cancer research on childhood cancers. These children deserve more than 4%. In the past thirty years, there have only been three drugs approved by the FDA specifically formulated for childhood cancers. Most protocols being used to treat these children are outdated and were never intended to be used on children. We are blessed to be able to support The Truth 365 and, although we don’t have millions to give, the dollar we donate from your support of our salon could just be that one dollar that saves a life. Every dollar — every penny — counts.

 

KatesCauseSecond, we are also asking for your help to purchase toys for Kate’s Cause Birthday Toy Drive benefiting the children of the PSV Center for Cancer and Blood Disorders! And, this project is super easy! Kate’s Cause has put together a wish list. Simply bring a toy from this list to Salon Khouri or purchase via Amazon and ship to us at Salon Khouri at either of our locations. We will then deliver all the amazing LOVE our clients sent to The Rhoades Family before June 5th, which is Kate’s 5th birthday. Sadly, Kate lost her life to leukemia this January at just four years old, and we would like to make this toy drive the biggest and best 5th birthday present we could give to Kate! We know she will be smiling down on this project with her sweet cheeks from heaven!

We won’t give up …

For those of our friends that have been Salon Khouri enthusiasts for a few years, you know our passion and the story and names behind our passion for childhood cancer awareness. This past year has seen tremendous strides being made, but there is still a lot of work to do. Here are a few stats borrowed from our friends at The Truth 365:

  • Cancer is the leading cause of death by disease in children and adolescents in the United States. (Source: National Cancer Institute)
  • One out of every 300 males and one out of every 333 females in America will develop cancer before their 20th birthday. (Source: American Society of Clinical Oncology)
  • More than 40,000 children undergo treatment for cancer each year. (Source: CureSearch)
  • Approximately 20 percent of all children with cancer will die for their disease, a secondary cancer,  or complications from treatment. (National Cancer Institute)
  • Incidence of invasive pediatric cancers is up 29% in the past 20 years. (Source: National Cancer Institute)
  • In the last 20 years, the U.S. Food and Drug Administration (FDA) has approved only two pediatric cancer drugs—Clolar (clofarabine) and Erwinaze (asparaginase Erwinia chrysanthemi)—that were initially studied in children. Other drugs for children’s cancers were first studied in or approved for adults with cancer. (American Association for Cancer Research)
  • Cancer treatments can affect a child’s growth, fertility, and endocrine system. Child survivors may be permanently immunologically suppressed. (Source: National Cancer Institute)

There are more facts, but reading just these few is hard enough. And that’s sort of the predicament these children are in. Childhood cancer is scary. It’s not easy to look at, and it’s certainly not easy to see photos of children battling the disease. Finding a way to rally in a positive way is often difficult, particularly when a child is terminal. And that’s why we chose to support this cause more than once last year and again this year. We feel more people need to know the truth about childhood cancers. Many times, it’s the parents of the children fighting who are out raising awareness. That’s just not fair to them. They have such a heavy load — it is our responsibility to pick up the banner and march on their behalf.

If you think childhood cancer is rare, think again. As we mentioned in our September 2013 blog post, we know at least eight children in our immediate circle of friends who have been diagnosed with a form of childhood cancer. Ava Buhr, the daughter of a long-time Salon Khouri client, was diagnosed with Pre-B Acute Lymphoblastic Leukemia when she was just two and a half years old. After two and a half years of chemotherapy — yes two and a half years — we got to cheer as Ava celebrated her last day of chemotherapy! You can read more about Ava here

Left: Ava after being diagnosed. Right: Ava on her LAST day of chemo!!

Left: Ava after being diagnosed. Right: Ava on her LAST day of chemo!!

Then, just last year, we received heartbreaking news that a long-time family friend’s daughter, Kate Rhoades, was diagnosed at just two and a half years of age with high risk, Pre-B-Cell Acute Lymphoblastic Leukemia — just like Ava. You can read more about Kate’s story here. The survival rates for ALL are great — which is the good news. However, Kate, just like Ava, will still have to endure a grueling two and a half years of chemotherapy. That’s a lot of pokes, a lot of nausea, a lot of just not feeling well at all. Probably one of the most difficult introductions I’ve ever had to make in my life was introducing Kate’s mom to Ava’s mom. Happy introductions would be something in the realm of, “both your daughters love Hello Kitty — I thought I’d introduce you!” Instead, it was, “Lindsay, let me introduce you to Jeannie. Her daughter was also diagnosed with ALL at two and a half years old and she can hopefully answer some questions for you.” 

On the left, Kate after being diagnosed checking out the "tubies" that will be implanted in her port so that chemo can be given with less "pokes".  On the right, Kate having a particularly bad chemo week. Blankies and iPad time were all she was up for doing that week.

On the left, Kate after being diagnosed checking out the “tubies” that will be implanted in her port so that chemo can be administered. On the right, Kate having a particularly bad chemo week. Blankies and iPad time were all she was up for doing that week.

We will continue to raise awareness for these little cuties. And we will continue to raise awareness for those we lost to this awful disease just this past year: Talia Joy Castellano, Zach Sobiech, Chase Johnson, and two local children, Gabriella Miller and Gavin Rupp. Each time we hear another child has lost their battle, our heart is filled with a heavy sadness. It is then filled with anger — anger that pediatric cancer is given such little funding compared to adult cancers, and anger that childhood cancers have risen 29% in the past 20 years and it’s not a headline story on every news channel.

As a little ol’ hair salon in Fairfax, VA, we are just trying to help in any way we can. Spread awareness, raise a little money, and hopefully, inspire others to learn more about childhood cancer and what they can do to help. One easy thing everyone can do is to sign the petition at The Truth 365 asking Congress to make childhood cancer research a national priority. You could follow Kate and Ava’s stories, volunteer at Cure Fest this September, or just simply pray for these kids. We will continue to pray daily for these little ones. Also, this May, Salon Khouri will donate $1 from each haircut to the dream team of pediatric oncologists working hard to find a cure via The Truth 365.

Crazy Hair Day for Kids Cancer – Help Us Spread the Word

Those of you who have been long-time Salon Khouri enthusiasts know our passion for helping children with pediatric cancer. We recently became aware of a grant program from Wella, the color line we use at the salon, called Hairdressers at Heart. This program will donate $10,000 to a salon’s charity of choice. I immediately emailed Mike Gillette, long-time pediatric cancer advocate and the guy behind The Truth 365 to share the information with him and to see if he had any ideas. As usual, Mike came up with a great idea that will not only help raise money and awareness for pediatric cancer funding, but also gets children directly involved in helping. The program is called Crazy Hair Day for Kids Cancer.

Here’s where we need your help. We are just asking you for help with two simple things:

  1. First, we need you to vote, daily, until May 15th, to help us win the $10,000 grant for The Arms Wide Open Childhood Cancer Foundation. Winning the grant will directly fund pediatric cancer research. Not many people realize that there is a severe lack of funding for pediatric cancers, particularly when compared to funding for adult cancer research. In fact, most drugs given to these little guys were developed for adults 20-30 years ago, and never tested on children. These kids need donations from grants and private donors to help them win their fight against cancer with tools made for them. These kids need current medicines designed for them to fight their specific cancers. Many children with cancer are oftentimes made more sick due to the toxicity of the drugs given to them to help them fight cancer.
  2. Second, if you have kids in school, or know someone who does, please see if your school would be open to having a Crazy Hair Day for Kids Cancer. It’s a simple, kids helping kids, no frills fundraiser. We have two flyers available that you can print and bring to your school’s administrative office. For more information on scheduling a Crazy Hair Day for Kids Cancer at your school, please email info@thetruth365.org. We have one flyer for preschool and elementary schools, and one for middle and high schools. Again, every dollar raised from your Crazy Hair Day for Kids Cancer fundraiser will directly fund pediatric cancer research.

Salon Khouri will be donating $1 from every haircut the month of May to The Arms Wide Open Childhood Cancer Foundation. We would love for you to make donations in the amount of $1, $3, and $5 at checkout as well! Also, if your little one would like to stop into Salon Khouri to have a little pink, blue or purple Eufora Creative Streak sprayed into their hair for their Crazy Hair Day, we’d love to help them out at no cost! The spray washes out and is non-toxic. Just give us a ring at 703.273.7878 to let us know you are coming by. And, if your school agrees to do a fundraiser, let us know as well. We would love to send a stylist out to help make kids hair crazy, again, at no cost!

Crazy Hair Day for Kids Cancer

Crazy Hair Day for Kids Cancer

Update 5/25/2013:

We were so thrilled to be invited to Let’s Talk Live to share information about Crazy Hair Day for Kids Cancer. You can watch the video here.