An Update

Hey all Connor here! Just wanted to update y'all on how I'm doing. College officially started today. I had one class today (Perspectives in Learning). It was interesting. I have to do a 5 page essay on a defining moment in my life. I plan to do it about Camp New Friends. I have to do it in 3rd person though. I have no other class today, but on Wednesday I have 4 out of my 5. Orientation was great for a day or two, but because I came up early it lasted for 8 days. I met some amazing people here too. Many of them have had the same interests as me. Ive also sorta (not that consistently) have started to try and run. My roommate and I get along which is good. Other then that not much is new, but I thought Id let you all know how it was going with college.


Also the news you've all been waiting for- The Shirt Sale: We sold 68 shirts and raised $567! GREAT JOB EVERYONE!

→ Connor

Back to school!

Hey Everyone!
I'm Sorry Its been a while sense I post anything but iv been busy its a very big year for me! with it being my senior year of high school I have college applications , high school classes, a college class, I am  earning my girl scout gold award , finding a job and keeping up with the blog! so much to do in so little time!

But enough about me!

Its that time of year again, Back to School and with this comes many emotions for a lot of people. there is excitement, were going back to school seeing our friends! there's nervousness , finding our classes, meeting new people, making first impressions and then for some of us there may be a degree of fear. Sure everyone is a little afraid, afraid of forgetting there locker combination, not saying the right thing in class but for a lot of us the thing we fear the most, is being bullied.

How many of you wake up in the morning and just want to stay in bed, not because your tired but because your afraid of what someone might say to you, that someone might say something about your spots, or bumps and you really don't feel like explaining it! *raises hand* if you had asked me this in middle school I would have raised my hand every time. now I admit that I was not bullied as much for my NF but I was frequently bullied for other things like my hair and my weight (I was not overweight) I wish I could give you the answer, there were several things that I was told that helped me survive middle school.
* just ignore them , if you don't react they will stop
*Act happy and say thank you!
I found that whenever I reacted , I got more upset but I can tell you one thing once I left middle school and got to high school, things got 100% better, I found my group of friends who I belonged with, people were not as mean and I just didn't care anymore, I love high school!
if you ever need any advice on how to handle bullying just ask any of us and we can help you! and I hope you have an amazing school year!
Until later!
-Allison

Landmark College

Hey all Connor here!  Ive busy getting ready for college. By that I mean many trips to Walmart. Yes I did all my shopping at Walmart, besides my clothes. Like I mentioned in my last post I'll be attending Landmark College. Its a college for those who learn differently. Im actually going up today for pre-orientation. "Regular" orientation is on Thursday. Landmark is located in the picturesque Vermont town of Putney, that has just over 2,500 residents. Landmark was founded in 1985, and its one of two schools specifically tailored to those students who learn differently. The college is small, and only has around 500 students, 90 academic staff and 80 administrative staff. The college offers students a few different options, such as a Summer session for High School students and one for College students to help them transition into college. They also have a Bridge Semester to help students who were in college but needed extra help. You can read more about the programs on the website. Some other benefits the college offers is assistive technology, such as having the text on a computer read out loud. All in all it was the best place for me to start out. I feel as Im less likely to fail out if I attend LMC.  Landmark is just like any other college, the only difference is in the way that they teach.

The day I got into Landmark was one of the best days of my life, besides going to Iceland and graduating from High School. I remember excitedly texting Lizzy (you remember her, our first guest). Lizzy also went to and graduated from Landmark. I wasn't sure if Id actually attend at first I still had to visit other colleges to see which would be the best fit. Well we all know where I chose to go. Im really excited about starting. Im taking a few classes Im excited about- Black & White Photography, Photojournalism, a Renaissance history class (I believe), and something else I cant remember. The college also has a Campus Activity Board (CAB) that organizes both events on campus and off. Some trips include going to a sea food festival and a NYC trip. The only downside to going to such an amazing college is that its in the middle of nowhere, well according to me (Im a "city boy"), but CAB has many trips off campus to keep students entertained. Im really excited to start college but nervous too. Like I mentioned earlier its a normal college, they just cater to those of us who need that extra bit of encouragement. Enjoy the last few weeks of summer.

*If you think someone you know could benefit from any of the programs LMC offers, consider attending a Open House. The next open houses this  are Oct. 26, Nov. 16, and Feb. 15, 2014. Or you can schedule a One-on-One visit. Both will give you all the information you could need.*


Well thats all for now! → Connor

Many Faces of NF- Rachel Mindrup an Artist

Hey all Connor here! I am not going to post about me this time. A friend of the NF Community Rachel Mindrup has done us a favor by not only drawing/painting portraits of those with NF (mine is pictured below with my original photo too), but she has also shared our blog on her page. She is a really amazing person. She does this to raise awareness and money. If you want a photo done her one request is that you donate to a local NF charity. She asks for nothing in return. Thats what makes her so awesome. If anyone with NF wants to have their photo done look her up on Facebook- Many Faces of NF. The wait is a long one but in the end its so worth it. Its such a unique way to help gain awareness. I highly suggest you go check her out. She's done portraits of people all around the world, with varying degrees and symptoms, and people of all ages. The best part about Rachel is that she started with one photo and it grew from there. I hope you guys check her out and check out her amazing work! I promise you, you wont be disappointed. Next week Ill go back to talking about myself, and Landmark College (where I will be attending for the next 2 years). Its a college specifically tailored to those with learning disabilities. But more on that later. Enjoy the rest of the week and our other blog posts.


**If anyone is wondering this photo was taken in 2012 when I was 16 (I am now 18). I was in Iceland over Boxing Day '11-January 2nd '12. If you have any questions about Iceland (despite being off topic) Ill gladly answer them.**

NOTE: I had to crop the photo to make them fit better side (I also had to make the original smaller) by side so the Icelandic writing is no longer visible (hence why I mentioned Iceland above).

→ Connor 

T-shirt Sign-up

We will have our t-shirts made by the end of the year. For now everyone can sign up and get us their information. That way we can get a list made up of everyone with the size(s) they want. You can use the following link.-http://www.customink.com/signup/3sikathy

News! News! News!

Hey everyone! Logan here! Just filling you in on some great news we all have to share! We are starting to make shirts! There is a link on the page titled "news" so go check that out to know more about it! Also on the "news" page you will see we have an official logo! How cool is that? I think it's pretty cool! Go check it out! we are so proud of it! And all the hard work Anthonoy Saint Thomas! Thank you so much! anyways please check that out because we will update it all the time when we have new news :)

Everyday Struggles

Hey readers, Jake here, I'm not going to say much this time. But,  I had a really busy weekend that I'd love to tell you guys about. As you know I have Epilepsy, and I have to take medication for it, but my refills ran out and I was running out of pills. I was supposed to get more on the 25 of July but I was at camp. So I had to cut back and take 1 instead of 2, then none. I started to have withdrawal symptoms. Like mood swings, headaches and just getting sick. So I had a small cold, which is bad because I had Lollapalooza to go to. But before Lolla, I had work which was difficult with my headaches. When I got there it was very hot, and I stood in very large crowds, which only made things worse. I got really dizzy at points of the day. I had at least 3 waters on me at a time. Other than all that I had a great time with my friends that where there. I saw tons of great bands play, my favorites were, Vampire Weekend and Two Door Cinema Club. I have my refill now and I am feeling a lot better.  So I guess this is it for now, until next time. Have a great day!

My New Post

 Hello Everyone This is Dylan Here.  Ever since my last post i just have been very busy working on my 2 summer assignments going into my junior year of HS.  One is for English class and the other is for AP Bio.  I have always had a huge interest in science and the world around me.  I always have expressed interest in wanting to be an engineer when i grow up and have been working hard in HS so i can get into a good college that will help me achieve my dream. on another note i am super excited to be going to Canada next week with my family. i love traveling. i hope to tell you all about it in my next post but for now i hope you all enjoy the rest of your summer and i hope to talk to you more soon.

Busy Busy Bee

Hey everyone! Logan here! August so far has been a crazy busy month for me! For starters starting the blog, looking into different beauty schools in my area. I just graduated highschool this year and i'm so excited to be out looking for schools but finding the right one is hard. You see I have a passion for hair and makeup, always have since I was a little girl. So not only am i been looking I've been practicing. I went from having blue and black hair this month to dark brown hair! I did a photo shoot with my beautiful best friend

Photography is just another one of my passion. I love the way you can capture such beauty in a single shot of the camera. These are the non-edit version of the pictures but anyways i should get back on topic about August here!

I'm trying to find a job because I've been stressing out lately at home and planning on moving out but that will be another post. I've been enjoying my last summer as a kid being with my friends and boyfriend who fully accepts and loves the fact I have Nf. He find my spots the most adorable thing ever. Isn't that just an awhhh moment? Anyways where was I? Oh yeah Also my eighteenth birthday is coming up in the next few weeks and im totally excited! Who would want a birthday post? Just let me know and i"ll do it because I love talking to you guy's even though were not really talking, haha silly me anyways. Not much more to say right now. I know August has just started though so i'm sure i'll have more to say soon.

My next post!

Hey everyone! Allison Here!

This week has been very busy for me! I am working on my gold award project which is the highest award a girl scout can earn and it is comparable to the boy scout eagle award. I am also packing and getting ready to go to Cape Cod with some of my best friends. I met David and Michelle thru my NF in a way. At age 8 I was diagnosed with Moya Moya , something I will talk about more later. my mom met Michelle through a support group website for parents. a year after our surgery's we met! Michelle , David ,myself and my mom have gone on more then 20 vacations together! David does not have NF but he knows what it is like to experience a medical illness and he shared a illness that many people with NF experience. if it is alright with all of you me and David are going to do a joint blog next week on moya moya, our friendship and our trip! what do you say? leave your comments below, if you would rather us keep it to strictly NF people just let us know. looking forward to tell you all about moya moya !

Lizzy's Amazing Story!

Hey there, my name is Lizzy Hubbard. About 19 years ago when I was coming close to my 3rd birthday my parents noticed that I was different. They took me to the doctor thinking I had a lazy eye when the doctors told them it was something else they had a biopsy done. That’s when we found out I had Neurofibromatosis type 1. When the doctors told my parents “oh she has tumors don’t worry about it” and basically left it at that. Since no one else in my family has NF their first thought was “oh my god it’s cancer!”
I’m not sure when I started getting the café aux lait spots, neither does my mother. About the time I was 4 or 5 I started to get two tumors in my face and neck that affected how I looked. I didn’t really think anything of it until I was 6; that’s when I started getting made fun of. I refused to look in mirrors because when I did I would start sobbing. Shortly after I started school my mom got notified about an organization called “Children’s Craniofacial Association” this was an organization for children and their families who have craniofacial anomalies. This organization has a retreat each year in a different state so families can get together and be able to be with others who might have similar stories. My first year at the retreat was in 1998 when it was in Dallas, Texas. After that long weekend there was an instant change in my attitude about myself, I didn’t cry anymore when I saw my reflection and I felt good about myself. I still got picked on by I knew how to cope with it better.
I had also started getting more MRI’s at least once a year. They stopped sedating me when I was 6 because of an incident with the anesthetic. I kept trying to sit up in the MRI and my mom kept giving me my Adderal so it didn’t mix well and I got really sick because of it. I still get at least one MRI a year as well as the occasional pet scan or CT scan.
I don’t remember when exactly but about the time between 7-11 I had a few surgeries to help my teeth grow in that were blocked by tumors, and getting wisdom teeth removed from my sinus cavity, the doctor who told me my teeth were up in my sinuses ironically had NF type 2 so he was able to give me insight on what someone with NF2 might have to deal with, just so I could know how the different types cold effect someone.
Middle school started to prove to be one of the worst years of my I was a loner and didn’t have many friends. Mainly because I wasn’t athletic, when I tried to play sports I was terribly uncoordinated and felt like I didn’t fit in.  5th grade a girl came to school there again who I knew from 1st grade. She proved to not be a real friend because she would try to make me do things I didn’t want to do and became abusive when I didn’t comply with her, and I began to feel ugly and that because of how I looked I wasn’t good enough. Thankfully when I got into 8th grade I actually made real friends and was able to start showing that I wasn’t just this weird uncoordinated loser. I actually started to feel pretty and good about myself, and people wanted to hang out with me at school.
This was able to go on even in high school, but unfortunately my 9th grade year I put on a good amount of weight and my self-esteem went back into a severe low because if the tumors, and I started to self-harm. It was that summer that I ended up with body dismorphic disorder and stopped eating. Dropped down from over 130-105. That’s when I really started to change, I started to grow into my tumors, they weren’t as noticeable other than in my nose being slightly deformed. I have kids tell me a lot “your nose looks funny” or “you have a big nose” but I learned to let those comments brush off me. I did start to feel pretty again. People in my grade knew me as “the nice girl.” I still got made fun of by the upper classes. It wasn’t until my junior year that things changed for me, either I got more of a backbone with people or people just stopped caring. Maybe it was a mixture of both things.  I also started to realize how hard classes were due to learning disabilities caused by the NF, no one in my family… including myself believed I would ever graduate high school. I also started having an issue with a tumor that developed in my leg that when we got it removed that it was “pre-cancerous” thankfully it got removed when it did.
Fast forward to June 12th 2009 the day my family was able to see a feat we all deemed impossible, I graduated high school, granted it was close to the bottom of the class but I still graduated. Unfortunately I was dating a really big jerk who took all the progress on my self-esteem away. He was abusive and just awful. I became someone who I hated and started to self-harm even more. At least I smartened up and got back on track with my life after I dumped him. I was able to do something even better, and that was to be the first grandchild on both sides to graduate from college. Even through the NF and learning disabilities.
Recently I found a tumor in my back that started to cause issues and constant pain, but unfortunately they can’t remove it, same goes for the tumors in my face. At least I stopped caring what people thought about me.
There is one big thing that helps me get by, and that is each year having the opportunity to go to Camp New Friends and see my “NF” Family. Without then I wouldn’t be as far as I have gotten today. I know that if I have a problem I can go to them, even if it’s just needing a shoulder to cry on.

We Have a Logo!

Thanks to Anthony Saint Thomas for designing the logo for us! We love it. What do you guys think? Comment below! We hope you like it as much as we do! We will be making shirts soon.

A New Piercing and College

Hey all if you haven't yet click on "Connor" thats my introduction. This has been a big week for me, from the blog launching, to getting my 4th piercing of the year and 5th overall (I'm kinda addicted), and I finally found out my roommate in college. My new piercing is the lower one, its called a conch. The top one I got in June, its called an industrial. Those are on my right ear. On my left ear I have my lobe (standard piercing) and a double helix [I like science]. I will be attending Landmark College-the college for those who learn differently. I'm really excited to start, orientation is on the 26th so about 3 weeks to go! Its exciting yet nerve racking, Im going to be away from all my friends and family. But its college, a new experience! Well thats what new with me. The others will have updates soon. If you have any questions dont hesitate to ask below. Until next time → Connor

First guest coming soon!

Hey everyone! I'm so excited to announce our first real post will be our first guess post! She's a girl from our camp all of us attend and we are so excited to share her story with all of you so be ready guys!

After that we will alternate between a girl and guy every 2 weeks. They will be a mix of kids from camp, people off twitter and as we grow... well just wait and see! We want to thank you all for all the support!