04.12.16: We wanted to share this sad news about Casey’s family. On March 28th, their home was burglarized. The thieves took a lock box from their home which contained not only photo CDs of their family photos, but also Casey’s ashes. We are praying that Casey’s ashes are returned home. The Truth 365 shared this news on their Facebook page. Please share the story on Facebook. The more people who see it, the more chances there are that Casey’s ashes will be returned to the Kropf’s.
Sweet Declan Carmical was diagnosed with AT/RT when he was just eight months old. We learned of Declan in 2009, when we were rallying behind Taylor Love, another local child diagnosed with cancer. We were quickly learning that childhood cancer is not rare.
Sadly, Declan lost his battle on August 18, 2010, just 8 days shy of his first birthday. Just one year later, one of our friends lost their sweet 14 month old,Casey Kropf, to the same cancer (AT/RT). Childhood cancer is taking too many children from loved ones. We hope to do everything we can to raise funds and awareness for local non-profits who are working toward a cure.
Journey 4 A Cure was created in memory of Declan to raise awareness, fund research and help families battling this horrible disease. Their objectives are to:
- Enable cutting-edge pediatric cancer research
- Inform the community about the realities of pediatric cancer, the statistics and funding inequities, and encourage public policy reform.
- Enhance the quality of life for children currently undergoing cancer treatment.
- Encourage families of children currently undergoing cancer treatment.
We will be donating $1 from every haircut in the month of April to this amazing, local non-profit in memory of Declan and Casey.
Alex Green was diagnosed with a Stage IV Wilms Tumor in 2009 at the young age of 5. To say he is a fighter is a bit of an understatement. As of September 2014, Alex has endured 400 chemo/infusions/immunizations, 100 clinic visits, 15 ER visits, 200 inpatient admissions, 300 IV pokes, 34 total days of radiation, 32 times being put to sleep, 1 bone marrow aspirate, 100 scans (CT/Xray/PET/Echo/EKG) and 15 surgeries. None of it has been easy, and we hope and pray for a cure for Alex and for the thousands of other children battling cancer.
We love finding local non-profit organizations that are making a difference in unique and meaningful ways, and for the month of March, we chose Alex’s Army Childhood Cancer Foundation. AACCF was created to provide Christian based support to children, parents, siblings, family members and friends living with a Pediatric Cancer diagnosis while raising awareness and funding for Pediatric Cancer Research.
We will be donating $1 from every haircut this month to Alex’s Army in the hopes that one of those dollars will help bring us one step closer to a cure.
This battle is relentless, exhausting, heartbreaking, but we stand strong and fight for our baby, no matter what that might mean. – Jenni and Derek Green
Ellie’s Hats is a Northern Virginia Non-Profit who seeks to bring joy and help to local families whose children are battling cancer. Ellie’s Hats was inspired by a sweet NoVa girl, Ellie Whitfield, who was diagnosed with Acute Lymphoblastic Leukemia in the Spring of 2013. After losing her hair from chemotherapy, Ellie began to wear different fun hats to school to help express her personality. Her P.E. teacher, Jay Coakley, noticed her affinity for “fun and cheery hats” and organized a hat drive to provide Ellie with a broader selection of hats to wear – and thus was born Ellie’s Hats! Thousands of children across the country now receive new hats through Ellie’s Hats.
In addition to providing joy to kids battling cancer by providing unique, fun hats, Ellie’s Hats collects gift cards and other items to give to local families whose children are battling cancer. Also, in 2014, Ellie’s Hats worked closely with Team Mathias to introduce a Cure Childhood Cancer License Plate in honor of Mathias Giordano to help spread awareness about childhood cancers. Mathias, diagnosed in 2012 with Osteosarcoma, inspired thousands through his determined cheer, his powerful courage and his extreme kindness. Mathias passed after a 28 month battle in December 2014.
This February, Salon Khouri will be donating $1 from every haircut from both our locations to Ellie’s Hats. Please take a moment to learn more about this wonderful organization. Please visit their website to see how you can help by knitting a hat or donating to this local, Northern Virginia non-profit.
We are once again offering yellow-gold extensions for $10 with all proceeds being donated to the Pediatric Dream Team through The Truth 365! Please come in this September and show your support – #GoGold!
We are working hard to turn Gold Hair for a Cure into a national program with She by SO.CAP. If you have two seconds, please send them an email to let them know how much it would mean to you if they implemented a National Program with The Truth 365!
The Childhood Cancer Awareness movement is growing. Our hope is that the color gold instantly makes people think, “childhood cancer awareness” just as pink conjures up “breast cancer awareness” for many. Yes, the movement is growing, but there is still a lot of work to be done.
There have been only three drugs in the past twenty years approved by the FDA that were specifically developed to treat children with cancer. And that number grew from two to three just this year. This is simply not acceptable.
The National Cancer Institute spends just 4% of it’s federal research dollars on childhood cancer research funding. Just 4%. This is simply not acceptable.
The incidents of childhood cancer have increased 29% in the past twenty years. As our friend Tom Mitchell at Stillbrave said, “we spend more as a nation on potato chips than we do finding a cure for various childhood cancers.” This is simply not acceptable.
There are more facts on childhood cancer, but you are probably getting a little overwhelmed thinking, “what can I do?” Well, the truth is, there’s a LOT you can do!
First, you can sign the Petition on The Truth 365 website asking Congress to make children a national priority by increasing federal funding for childhood cancer research.
You can volunteer with local organizations such as Stillbrave, Ellie’s Hats, Kyle’s Kamp, Journey4ACure, participate in CureFest on September 20th, or email us to get connected to other many wonderful groups.
You can come into Salon Khouri during the month of September and get a haircut or a yellow-gold hair extension. We are donating $1 from every haircut in both our Dulles Landing and Fairfax locations to The Truth 365. We are donating net proceeds from the $10 yellow-gold hair extensions as well! Or, come see us at CureFest to learn more about how to implement a Crazy Hair Day at your school to raise money and awareness for childhood cancers.
Will you promise that you will do just one thing on this list? Then, tell someone about it. Ask them to do one thing too. Let’s keep the movement going! Help us spread awareness!
Do you realize that, in the last 20 years, there have been only two drugs approved by the FDA for childhood cancers that were initially studied in children? That’s out of 146 drugs approved drugs for cancer treatments in the last twenty years. In fact, many do not realize that cancer is the leading cause of death by disease in children and adolescents in the United States. (Source: National Cancer Institute).
Last night, Erin Griffin died from DIPG, the brain tumor she had been battling for two and a half years. Erin was just 14 years old when she died. You can see Erin pictured to the right with her friend, Gabby, who also died from DIPG in October 2013 when she was just 10 years old. Two sweet girls, taken far too soon because there is simply not enough research dollars going toward childhood cancers. Did you know that only 4% of the National Cancer Institute’s Budget for cancer research is allocated toward childhood cancer research? And, if you think that these kids get the short end of the stick because childhood cancers are rare, think again. Childhood cancers have risen 29% in the past twenty years. (Source: National Cancer Institute). Since we were made aware of childhood cancer in 2007, we’ve learned personally that childhood cancer is not rare — just read our blog post from September of 2013, childhood cancer is not rare.
Our apologies if this post isn’t pretty, but childhood cancer is far from pretty. And, until that changes, we will continue to #GoGold in September, sharing stories about these children that have touched our hearts so dearly. We will continue to be a voice for these children because the majority of the people doing so currently are the family members fighting for their kid’s life, or have lost their child to cancer, and that just doesn’t seem fair. Unfortunately, we don’t know of a way to make it pretty. We can only make it a journey of hope and to celebrate the wins in this arena with triumphant celebration! Learning of a “No Evidence of Disease” (NED) in one of these children fills us with so much hope and excitement that we are giddy for days. We will continue to pray for these children, and to share the facts about childhood cancer, until a cure is found.
Here’s what we are doing to help, and we will share a few ways you can help below!
- We will be donating $1 from every haircut in September to the childhood cancer dream team through The Truth 365.
- Again, this year, instead of a cut-a-thon which only lasts one day, we wanted to do something that people could participate the entire month. Similar to the Pink
Hair for Hope campaign, we are launching a Gold Hair for a Cure campaign. Come and have a SO.CAP gold extension added to your locks for just $10 and we will donate 100% of our profit to finding a cure for pediatric cancer. When people ask why you have a gold hair extension, tell them about Pediatric Cancer Action Month! (And, we have contacted SO.CAP USA to see if they can make this a national campaign. We’ll keep you posted!)
- We will be asking every person checking out if they would like to add $1, $3 or $5 to their ticket to be donated to pediatric cancer research funding.
- We will be supporting Camp Sunshine in January 2015, and a bunch of us from the salon will be taking the Virginia Polar Dip to support Camp Sunshine. More details to come on that later 🙂
Here’s what you can do:
- Participate in CureFest in Washington DC on September 21, 2014. The festival is FREE and the walk is just $20. We will be there again this year showing people how easy a Crazy Hair Day for Kids’ Cancer fundraisers are!
- Take a Crazy Hair Day for Kids’ Cancer flyer to your school and have your school host a no-cost fundraiser. It’s so very simple. Kids get to wear their hair crazy for a day and they bring in a small donation. We have a flyer for preschool and elementary schools, and one for middle and high schools. When other kids ask why their hair is ‘crazy’ for the day, it’s a *great* opportunity for these kids to share why. Don’t have kids in school? Take a flyer to work and hang it in your office kitchen. And if you are not a client of ours, take the fliers to your salon. Share with your stylist or the owner of that salon. Get them involved in promoting this amazingly easy fundraiser.
- Donate to any one of the many organizations helping kids battling cancer. Here are just a few great ones we know about or have donated to in the past: The Band of Parents, The Isabella Santos Foundation, Journey 4 A Cure, Arms Wide Open Childhood Cancer Foundation, Stillbrave Childhood Cancer Foundation and the DC Candlelighters. Please do not think any amount is too small. If everyone gave $1, these organizations and the children they serve would benefit tremendously!
- Participate in a walk in Nova, at CureFest, or a run, or join Team Salon Khouri on our Virginia Polar dip. Come on, it will be fun — submerging into a little freezing water for less than one minute of your life for these kids sounds like a great way to have fun and spread awareness.
- Get involved through a social media outreach campaign through The Truth 365.
- Watch the Truth 365 Documentary to learn more about the state of pediatric cancer.
- Write your Congressperson, and ask him or her to sign The Pledge. We need more than 4% of federal cancer research dollars going toward pediatric cancers.
Hopefully one of these will speak to you. These kids do not have a voice. They are busy fighting for their lives. Be their voice, take action for them.
Just about a week and a half ago, Tattoo Tom Mitchell ran 100 miles in honor of one hundred children battling or who have lost their battle with cancer. Following his grueling journey via Facebook, we saw many times the fatigue and the mental exhaustion involved in such a physical challenge. But each mile, he stayed the course. As Tom posted to the Stillbrave Facebook page, “I wanted to quit many times, everything hurt so bad I could hardly take a painless breath,” yet he finished by thinking about the “100 children who carried me the entire way,” including his daughter Shayla who lost her several year battle with cancer.
Stillbrave’s mission is simple, yet powerful: “To provide non-medical, supportive care to children with cancer, and their families in the Washington, DC Metro area.” Many times when thinking of childhood cancer, the focus is only on funding research. Don’t get us wrong, research funding must be the primary focus. With a measly 4% of the federal cancer budget, we believe without a doubt that childhood cancer research needs more funding. However, there are many non-medical needs these families face. Parents miss work and often lose vital income needed to maintain the household. Siblings need babysitting while mom and dad are at the hospital. A faucet may start to leak in the house — the repair of which is the last thing any of these families need on any given week of treatments.
This July, we are supporting Stillbrave Childhood Cancer Foundation by donating $1 from every haircut we do this month. Additionally, you can choose to add $1, $3 or $5 to your ticket at checkout which will also be donated to Stillbrave. We encourage you to take time to read the cold hard facts about childhood cancers, sign the petition at The Truth 365 to ask Congress to increase federal funding for childhood cancer, and look at the many volunteer opportunities available. #StepUp for Childhood Cancer!