Ok I’m going to try and complete this!! Haha let’s see how this goes…

Day 1- Hi👋 my name is Carli, I’m 16, and I have #hydrocephalus which is an incurable brain condition where CSF can’t drain from your brain and absorb into your body by itself due to some kind of obstruction or abnormality. My type of hydrocephalus is aqueductal stenosis. I was diagnosed at 5 months old and had a #shunt put in to drain the excess fluid, to date I’ve had 56 brain surgeries; I currently have a VA shunt which drains from my brain to my heart; unfortunately I will probably need more in the future unless we FIND A CURE, a shunt is NOT a cure!!!! 

**Please follow my blog as I spread awareness about #hydrocephalus , meet new friends and tell my story! 💕😊

Ok I’m going to try and complete this!! Haha let’s see how this goes…

Day 1- Hi👋 my name is Carli, I’m 16, and I have #hydrocephalus which is an incurable brain condition where CSF can’t drain from your brain and absorb into your body by itself due to some kind of obstruction or abnormality. My type of hydrocephalus is aqueductal stenosis. I was diagnosed at 5 months old and had a #shunt put in to drain the excess fluid, to date I’ve had 56 brain surgeries; I currently have a VA shunt which drains from my brain to my heart; unfortunately I will probably need more in the future unless we FIND A CURE, a shunt is NOT a cure!!!!

**Please follow my blog as I spread awareness about #hydrocephalus , meet new friends and tell my story! 💕😊

We have some wonderful “Angels” running in the NYC More Fitness 1/2 Marathon in Central Park this month!  They are running to raise awareness and fund a cure!  If you would like to sponsor our team, please visit:

www.active.com/donate/phfny/carun

All donations go directly to the Pediatric Hydrocephalus Foundation are a 100% Tax Deductible (BONUS!)

Thank you to Cheryl, Martha and Anna and good luck!!

-Carli

Carli’s Angels Year End E-Mail to Our Supporters!

Happy Holidays!

I wanted to take a moment and thank you for all your help with Carli’s Angels during 2013.  As you may know, Carli’s Angels, as a community was started in the summer of 2013.  We had an amazing year and I am so thankful for all the support you have shown!  Having you as a part of our cause is music to my heart!  I can’t thank you enough for being part of Carli’s Angels!  It means so much to me! As you may know, we did a great deal of work with the Pediatric Hydrocephalus Foundation in 2013.  This is an organization that is very close to my heart. Which is why I knew I had to do something to help. Thus, Carli’s Angels was created. To date with your help and the support from family and friends, we have raised over $5,000 for the PHF! We couldn’t be any happier!

2013 was a very busy inaugural year for Carli’s Angels.   

During the summer of 2013 we officially launched the Carli’s Angels Facebook community!  With the help of one of our “Angels”, Chris Jacobs, a logo and various amazing artwork was created to get us started!  If you are not following us, please visit us and follow us at:

https://www.facebook.com/pages/Carlis-Angels/185521634945040

Later in the summer with the help of another amazing “Angel”, United Future, we launched our website!  Please visit us there to keep up on our activities and information:

www.CarlisAngels.org

You can also follow us on other social media sites like:

Tumblr at:     http://carlisangels.tumblr.com/

Twitter at:     carlis_angels16

Instagram at:   carlis_angels

In August, Carli’s Angels was invited to go to Washington, DC to speak to members of Congress in an effort to inform them all about Hydrocephalus and to ask them to join our Caucus and to support funding for Hydrocephalus research. We felt so honored to be a part of this opportunity and enjoyed meeting families from all over the US. We look forward to doing this again next year.

We also participated in the New York Pediatric Hydrocephalus Walk and Family Fun Day in September.  This was the first time we actually had a “table” at an event.  We had so much fun meeting people and raising awareness!  

In October, Carli’s Angels participated in the PHF Pasta Dinner and Family Fun Day.  Our friends at the PHF were generous enough to allow Carli’s Angels to have our table at this event as well!  What a fun day this was.  It was another great opportunity to meet people and share life’s stories with other families. 

I also had the privilege to be interviewed for an article written by another Hydrocephalus warrior and a video prepared by a Hydrocephalus warrior for a school project.  I love their attitudes and everything they are doing to help drive awareness!  Please take a minute to read the article here:

http://www.silive.com/healthfit/index.ssf/2013/12/an_often_misunderstood_brain_condition.html

The video and a bunch of great photos can be found on our Facebook page.

As our last event for the year, we held a “Dress Down” day at St. Patrick’s School.  This was a wonderful event where students / families were able to make a small donation to the Pediatric Hydrocephalus Foundation and in return, the student was able to wear regular clothes instead of their school uniform.  We had a huge surprise with this event as a family from St. Patrick’s actually matched the money raised during the dress down day!  Thank you to the Platt family for their support and matching gift!

2014 is shaping up to be an even more exciting year for Carli’s Angels.  We will have some big news early next year and look forward to being more active in 2014!

Our Angels can continue to support Carli’s Angels and the Pediatric Hydrocephalus Foundation by visiting our donation page listed below.  We also ask you to please help us drive awareness by sharing this e-mail with others, liking our Facebook page, following us on Social Media and by passing our donation link on to others that may wish to support our important cause! 

http://www.active.com/donate/phfwalkny2013/carlisangels

 

Thank you again from the bottom of my heart for an amazing start to Carli’s Angels! We couldn’t have done this without you!  May you have a blessed new year and may 2014 be a year of health and happiness!  Stay tuned for big news in 2014!

Sincerely,

Carli

Carli’s Angels - “Sent to Cure Hydrocephalus”