An Update from Connor, Guest Lizzy
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Living with Neurofibromatosis
A blog run by Logan, Allison, Dylan, Jake, and Connor. We all have Neurofibromatosis (NF) type 1. On this blog we will share our personal stories then update you on whats going on with us. We will also have guest that have NF1 and NF2 (diffrent people), such as friends, parents, ect. We hope you enjoy our blog.
Sunday, September 29, 2013
Monday, September 9, 2013
New Year
hello everyone,
today was my first day of junior year today. this is probably going to be the most important school year of my life. i have the SAT's and ACT's looming throughout the whole year. to go along with that i got put into honors English and AP bio. My entire schedule is pre-calc, US history, gym, lunch, honors English, double period AP bio, and Teen action. when i first saw my schedule i was a little dissapointed but when i found out more about teen action i felt good about having it. we get involved in problems with society and help raise awareness for the problems we see in society. this is going to be a long and important year and i hope to write more about it as the year goes on but till now, live long and prosper.
-Dylan
today was my first day of junior year today. this is probably going to be the most important school year of my life. i have the SAT's and ACT's looming throughout the whole year. to go along with that i got put into honors English and AP bio. My entire schedule is pre-calc, US history, gym, lunch, honors English, double period AP bio, and Teen action. when i first saw my schedule i was a little dissapointed but when i found out more about teen action i felt good about having it. we get involved in problems with society and help raise awareness for the problems we see in society. this is going to be a long and important year and i hope to write more about it as the year goes on but till now, live long and prosper.
-Dylan
Friday, August 30, 2013
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
Also the news you've all been waiting for- The Shirt Sale: We sold 68 shirts and raised $567! GREAT JOB EVERYONE!
→ Connor
Thursday, August 29, 2013
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
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
Monday, August 26, 2013
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.
*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
Tuesday, August 13, 2013
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
**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
Sunday, August 11, 2013
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
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