#GoGold

Honoring Mathias Giordano through Team Mathias: Our December Community Outreach Partner

MathiasGravesite

There are a million and one things wrong with this photo. It’s a photo taken by Roya Giordano at the graveside of her son, Mathias. The day Roya posted this photo, it had been 1,085 days without her precious son on this earth. Mathias passed on December 7th, 2014 after a 29-month long battle with Osteosarcoma, a bone cancer diagnosed mostly in boys, mostly whom are under the age of 25. Mathias was just 11 years old when he and his family were given the devastating diagnosis. Mom’s should never, ever have to post a photo like this, or count the number of days it has been since their little one was last kissed or hugged by them.

We wanted to share Mathias’ story with you and have again selected the foundation set up in his name, Team Mathias, as our December Community Outreach Partner as it is our hope that one day, there will be a cure for all childhood cancers. Spreading Mathias’ story is one way we can honor him, remember him, and spread awareness about childhood cancer.

Mathias had an amazing smile. Our bet is lots of 11 year old girls were smitten with him! He was funny and giving of himself, always looking for ways to serve others while he himself was battling an awful disease. Mathias, Roya, and Jay Coakley, founder of Ellie’s Hats, worked together toward the end of Mathias’ battle to create a Childhood Cancer specialty plate in Virginia, after learning one did not yet exist. (We urge you to order a CC plate through the DMV.) We posted last year about the tremendous LOVE for Mathias that is so apparent when looking through photos on the Team Mathias Facebook page. Since that post, more beautiful photos have been published of people coming together in Mathias’ memory to do good for others. Sorrowfully, another photo posted was the one above, whose realization smacks you in the face that childhood cancer is not rare, is desperately underfunded, and sadly not spoken of enough in our society. It’s a harsh reality, but one that will not be changed by looking the other way or avoiding the topic.

We urge you to please learn more about the facts of childhood cancer. Then we urge you to do something. There are some amazing ideas on the Team Mathias site, on their Take Action page. Register with Be the Match, donate blood, sponsor a Team Mathias Care package, volunteer at an event, share facts on your Facebook page.

This December, Salon Khouri will be sharing Mathias’ story with our community. We are also donating $1 from every haircut from our Fairfax and Loudoun locations to Team Mathias.

 

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

Gold Hair for a Cure!

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!

 

GoGold

Promise us this …

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!

 

#GoGold

Why we will continue to #GoGold every September

ErinAndAmanda

Erin Griffin and Gabriella Miller at CureFest in September 2013. Gabby succumbed to her tumor in October 26, 2013, and Erin to hers on September 1, 2014.

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!

  1. We will be donating $1 from every haircut in September to the childhood cancer dream team through The Truth 365.
  2. 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
    Gold Hair for a Cure

    Gold Hair for a Cure

    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!)

  3. 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.
  4. 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:

  1. 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!
  2. 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.
  3. 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!
  4. 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.
  5. Get involved through a social media outreach campaign through The Truth 365.
  6. Watch the Truth 365 Documentary to learn more about the state of pediatric cancer.
  7. 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.