This one is going to be super short and sweet because I'm still trying to finish a paper. This paper season is killing me, I'm so glad it's almost over. I've been listening to a song lately to get me in a positive working mindset and I just looked up the lyrics now and saw how appropriate it was. The things that you accomplish in life are proportionate to the things you take aim at. We should always know that we can do anything!
The past week has been AMAZING for the fundraiser! I raised the goal to $15,000 and we've now got just over $4600! Also, we're just a few members shy of 1000 on the Facebook group. I truly, truly never dreamed it would get this big and am so thankful for everybody's receptiveness.
The song is called Go Do by Jónsi (singer of Sigur Rós), here is the youtube link http://www.youtube.com/watch?v=T6HjT4SQKJI. Check out the lyrics, I find that they're especially applicable for everything that is going through my mind these days.
Go sing too loud
Make your voice break - Sing it out
Go scream do shout
Make an earthquake...
You wish fire would die and turn colder
You wish your love could see you grow older
We should always know that we can do anything
Go drum do go out
Make your hands ache - Play it out
Go march through crowds
Make your day break...
You wish silence released noise in tremors
You wish I know it surrender to summer
We should always know that we can do everything
Go do you´ll know how to
Just let yourself fall into landslide
Go do you´ll know how to
Just let yourself give into low tide
Go do!
Tie strings to clouds
Make your own lake - Let it flow
Throw seeds to sprout
Make your own break - Let them grow
Let them grow (Endless summers)
Let them grow (Endless summers)
(Go do endless summers)
You will survive we´ll never stop wonders
You and sunrise will never fall under
You will survive we´ll never stop wonders
You and sunrise will never fall under
We should always know that we can do anything
Go do!
Friday, March 26, 2010
Monday, March 15, 2010
Updates
Since I started the facebook group, I've been running full steam ahead with the fundraiser and putting a significant amount of time into it. It may not seem like a lot gets done on the surface, but behind the scenes I am constantly writing emails to people in important places, brainstorming new ways to get our message out, training for the ride, and working on the media side of the equation. This weekend I put a lot of hours in at work and had family engagements and, thus, wasn't able to spend as much time on this as I have been. March is also a crazy month, for example, I have three major papers due in the next week and a half. There won't be as many updates over the next two weeks, but I promise I'm not sleeping at the wheel and we've had some great concrete developments over the past few days!
The first is that thanks to Juan Morales, we now have a flyer which I have already begun to distribute in my classes. I'm really excited about the flyer because it's an easy way for people to spread the word in a non-intense way. The flyer is a great thing to distribute in classes, post in public places, post in work places, email as an attachment, etc.
Another great development is that I've received confirmation from the owner of a bar in Toronto that they will host an end-of-bike-ride party for us and all cover will go directly to our fundraising efforts. I will post more specifics once he and I have covered all the necessary details, but I'm really excited about this as it's going to be a great way to wind down after the bike ride, have fun, and raise a lot of money at the same time!
A third awesome development is that The Mike, the student run paper of St. Michael's College, has asked me to write an article about my sister and about my efforts to spread the word and raise money, so I'm really excited about getting to work on that article and hearing the response from students.
Both my parents have also asked me to draft a letter about what I'm doing so that they can send it out to their contacts, most of whom don't use facebook.
So, essentially there is a lot going on right now in my own personal life, but also a lot going on with the fundraiser, so stay tuned everybody!
Thanks again for all your support!
The first is that thanks to Juan Morales, we now have a flyer which I have already begun to distribute in my classes. I'm really excited about the flyer because it's an easy way for people to spread the word in a non-intense way. The flyer is a great thing to distribute in classes, post in public places, post in work places, email as an attachment, etc.
Another great development is that I've received confirmation from the owner of a bar in Toronto that they will host an end-of-bike-ride party for us and all cover will go directly to our fundraising efforts. I will post more specifics once he and I have covered all the necessary details, but I'm really excited about this as it's going to be a great way to wind down after the bike ride, have fun, and raise a lot of money at the same time!
A third awesome development is that The Mike, the student run paper of St. Michael's College, has asked me to write an article about my sister and about my efforts to spread the word and raise money, so I'm really excited about getting to work on that article and hearing the response from students.
Both my parents have also asked me to draft a letter about what I'm doing so that they can send it out to their contacts, most of whom don't use facebook.
So, essentially there is a lot going on right now in my own personal life, but also a lot going on with the fundraiser, so stay tuned everybody!
Thanks again for all your support!
Wednesday, March 10, 2010
Proof of much your support means to me
Those of you who know me, know that I've always been the 'glass half-full' type. I'm always positive, to the point where I'm sure it gets irritating for some. And so, I'm not really sure what to do with sadness. Don't get me wrong, I get sad sometimes, but I always find a way to shake it off about as quickly as it grips me. A couple weeks ago, however, when I decided to start this fundraiser for Val, I found that sad feeling really hard to shake. The thing is, for some reason, I've never really allowed myself to think of FOP as a big part of our lives. I wouldn't quite say that I block its existence out of my mind, but some part of me definitely likes to pretend that Val doesn't really have it, or it's not really that bad, or that at the end of the day, she's going to be fine. This kind of logic (or denial) became impossible once I began mentally planning for this fundraiser. Working out details in my head, thinking about my next steps, trying to figure out my hopes and goals, along with all of the other things I was thinking about, meant that I was constantly painfully aware of FOP and its increasing effect on my sister's life.
I found myself trying not to cry as I was doing laps at the Athletic Centre and brushing away tears and simultaneously sweating on the elliptical. Part of me hated myself for being sad because I feel like I have no right to be sad. After all, I'm not the one who lives with FOP every day like my sister and so many others do. I used the frustration that I was feeling to fuel my workouts, but found that I was unable to focus in my classes. I started feeling lethargic, and began to be concerned about how I was going to finish the school year.
Luckily, an email from my future sister-in-law encouraging me in my efforts was enough to bring back the real me, the positive me. I began to see this whole thing in a positive light and began also to get really excited about it. I got to work and created the facebook group and invited everyone I knew. I made an announcement to my entire family about my intentions and encouraged everyone I knew to spread the word. Next thing I knew, a community of people who are incredibly supportive and caring had developed around Val and I. I now receive daily messages from people who I haven't talked to in years, or who I've never talked to in my life, showing their enormous amounts of support for my efforts and concern for my sister. I want to tell everybody who has shown their support just how much it truly means to me and, of course, Val. Your open-heartedness is what keeps me so excited about this and pumped to continue.
From the bottom of my heart, thank you.
I found myself trying not to cry as I was doing laps at the Athletic Centre and brushing away tears and simultaneously sweating on the elliptical. Part of me hated myself for being sad because I feel like I have no right to be sad. After all, I'm not the one who lives with FOP every day like my sister and so many others do. I used the frustration that I was feeling to fuel my workouts, but found that I was unable to focus in my classes. I started feeling lethargic, and began to be concerned about how I was going to finish the school year.
Luckily, an email from my future sister-in-law encouraging me in my efforts was enough to bring back the real me, the positive me. I began to see this whole thing in a positive light and began also to get really excited about it. I got to work and created the facebook group and invited everyone I knew. I made an announcement to my entire family about my intentions and encouraged everyone I knew to spread the word. Next thing I knew, a community of people who are incredibly supportive and caring had developed around Val and I. I now receive daily messages from people who I haven't talked to in years, or who I've never talked to in my life, showing their enormous amounts of support for my efforts and concern for my sister. I want to tell everybody who has shown their support just how much it truly means to me and, of course, Val. Your open-heartedness is what keeps me so excited about this and pumped to continue.
From the bottom of my heart, thank you.
Monday, March 8, 2010
The beginning
Ever since I was 15, I've wanted to fundraise for Val. You see, my big sister Val has an extremely rare and incurable disease called FOP. That stands for fibrodysplasia ossificans progressiva. What happens to people who have FOP is that the connective tissues in their bodies (muscles, tendons, and ligaments) morph into bone, leaving the victim trapped in a second skeleton. People who have FOP lose mobility in their body until their joints are locked, or fused.
Val was diagnosed when she was 15. It was a huge shock for all of us. We didn't know anything about FOP (it's so rare that mostly only people who have FOP and their family and friends have ever heard about it) and so we googled it. That only served to terrify us more as we saw all the frightening pictures of what we assumed Val would soon look like.
However, our family has been blessed in that Val seems to have a very slowly progressing type of FOP. Although it doesn't really seem mild or slow to me, Dr. Fred Kaplan, the leading FOP researcher in the world, assures us that Val's case is relatively mild. The key word here is relative. Val's life has been significantly affected by FOP; recently she got a scooter so that she will no longer have to walk for long durations (this is very hard on her body).
The past few months have been very hard for Val. She has experienced a lot more flare-ups (a flare up is what happens when a bone is beginning to form in a new spot, it is often painful), a lot more frequently than we are used to. So I decided that my procrastination had to end and I had to act on what I've had in the back of my mind for 6 years now.
And so, I decided to bike ride from Niagara Falls to downtown Toronto to raise money and awareness for FOP. I created a facebook page and a personal donation page to start my efforts and invited everybody I knew. Initially, I intended to do the ride on my own but have been surprised (and incredibly touched) by the dozens of offers I have received from people who want to ride the whole way with me! Not only that, but I have received numerous heartfelt messages (some from people I don't even know) wishing me the best of luck and offering their thoughts and prayers for Val and my family.
The facebook group and donation page have been up for only 2 days now and we already have 380 members and $545! I am so excited and happy to see people coming together to support me in my efforts and my sister in her experiences.
I want to offer a sincere thank you to everybody who has taken the time to message me, to donate, or to offer their help. Your support means everything.
If you have not seen my facebook page here is a link: http://www.facebook.com/group.php?gid=368155889047
Also, here is a link to my personal fundraising page: http://www.canadahelps.org/GivingPages/GivingPage.aspx?gpID=6904
Val was diagnosed when she was 15. It was a huge shock for all of us. We didn't know anything about FOP (it's so rare that mostly only people who have FOP and their family and friends have ever heard about it) and so we googled it. That only served to terrify us more as we saw all the frightening pictures of what we assumed Val would soon look like.
However, our family has been blessed in that Val seems to have a very slowly progressing type of FOP. Although it doesn't really seem mild or slow to me, Dr. Fred Kaplan, the leading FOP researcher in the world, assures us that Val's case is relatively mild. The key word here is relative. Val's life has been significantly affected by FOP; recently she got a scooter so that she will no longer have to walk for long durations (this is very hard on her body).
The past few months have been very hard for Val. She has experienced a lot more flare-ups (a flare up is what happens when a bone is beginning to form in a new spot, it is often painful), a lot more frequently than we are used to. So I decided that my procrastination had to end and I had to act on what I've had in the back of my mind for 6 years now.
And so, I decided to bike ride from Niagara Falls to downtown Toronto to raise money and awareness for FOP. I created a facebook page and a personal donation page to start my efforts and invited everybody I knew. Initially, I intended to do the ride on my own but have been surprised (and incredibly touched) by the dozens of offers I have received from people who want to ride the whole way with me! Not only that, but I have received numerous heartfelt messages (some from people I don't even know) wishing me the best of luck and offering their thoughts and prayers for Val and my family.
The facebook group and donation page have been up for only 2 days now and we already have 380 members and $545! I am so excited and happy to see people coming together to support me in my efforts and my sister in her experiences.
I want to offer a sincere thank you to everybody who has taken the time to message me, to donate, or to offer their help. Your support means everything.
If you have not seen my facebook page here is a link: http://www.facebook.com/group.php?gid=368155889047
Also, here is a link to my personal fundraising page: http://www.canadahelps.org/GivingPages/GivingPage.aspx?gpID=6904
Subscribe to:
Posts (Atom)
