Bake sale success!

As I mentioned in the last post, I had planned several bake sales for this week. I was planning on selling for three days - Monday, Tuesday, and Thursday. Due to last sale's success, I had instructed my family to bake roughly three times as much as they had last time and here's what I got:

- a mountain of cookies
- 24 brownies
- 40 cupcakes
- 1 chocolate loaf
- 1 tray of raspberry bars
- 1 tray of maple walnut bars
- 3 massive cakes (one marble chocolate with chocolate chips, one butter pecan, and one lemon poppy seed)
- 32 rice krispie squares

I hope you all know that when I say a mountain, I'm almost certainly not exaggerating. Monday's bake sale went really well, in spite of the fact that it was a Monday which is generally a slow day for bake sales. I had the chance to talk to quite a few people about what FOP is and what it does to the people who have it. I handed out a lot of the fliers that Carrie from the Canadian FOP Network had sent over. I even sold some FOP awareness bracelets :) At the end of the day, we had made $196.86 which is AMAZING for a bake sale! Usually on a good day they make around $90-100, so we killed it!

Tuesday rolled around and I brought all the baked goods to campus on the off chance that we would go through everything. Well, good thing I did because we did! It was amazing to see the difference between business on a Monday and business on a Tuesday. First of all, there are significantly less people wandering about on a Monday (everyone is avoiding reality in their beds at home). Secondly, people are just generally friendlier after they get over the Monday blues. This is all to say that Tuesday was a resounding success. I ran out of CFOPN fliers, had several more engaging conversations with people curious about FOP, sold a few more bracelets, and we ended up selling out completely of the baked goods before the sale was even over! By the time everything was sold we had made $172.62!

Now, I found all of this pretty exciting, but something happened to me today that rivaled that excitement. While studying in the library, I saw a friend of mine, and wrapped nicely around his wrist was a FOP awareness bracelet. This marked the first time I had seen anyone who was not a family member wearing the bracelet. My lovely friend Tut is African and thus the light red of the bracelet pops beautifully against his dark skin. I only hope others will notice and question him about it!

New giving page up!

Hey everyone!
We're getting in the thick of some new fundraising which is super fun!

A few weeks ago I hosted a bake sale which made over $200 - which blew me away! Next week I'll be hosting three more of these and I'll keep you posted on how much we make!

Tomorrow I'll be giving a speech at the AIESEC Toronto General Assembly about my journey fundraising for FOP, my sister, and the challenges I faced. Wish me luck!

And best of all - the new givingpage is up! Yayyy! Here it is: http://www.canadahelps.org/GivingPages/GivingPage.aspx?gpID=9966

p.s. there was a ridiculous amount of exclamation marks in this post.

Lots and lots of love,
Vanessa

Aaaaand we're back!

A lot has happened since my last time posting. Most importantly, the final numbers are in for the Ride for FOP fundraiser and we ended up raising $33,670! Pretty crazy, huh? It was an amazing ride (literally and figuratively) and something I will always remember. It was amazing to have my family riding along with me, I could not have done it without them!

And so begins a new slew of fundraising! I hosted a bake sale yesterday, along with some amazing friends to whom I am incredibly grateful. My awesome family pitched in and we ended up with countless cookies, 24 rice krispie squares, 16 slices of marble walnut cake, 24 brownies, 24 chocolate cake squares, and 12 chocolate cupcakes. The best part is that we sold out, got some people learning about what FOP is, and made $201!

I'm really grateful to somebody new in my life who I met through an organization that is also new in my life, AIESEC Toronto. Ammad is awesome. He is incredibly kind and supportive. From the moment he found about my Ride for FOP, he has been trying to think up ways to help me get the word out and get some funds in. It was thanks to him that I was able to host the bake sale yesterday, and thanks to him that I have three more coming up in November. He's also asked me to speak in front of a crowd of about 100 about FOP so I will update with how that goes. It's just more proof of what I have learned through this process - so much of the battle is meeting people who are receptive to your message. So thanks Ammad!

I'm already in discussions with Carrie from the CFOPN to pin a date for next year's ride. The best part about it is that this is now becoming a Canada-wide event. Last year's event was so successful and garnered so much attention that it seems to have inspired other communities to do the same! So, this year the ride for FOP will be occurring not just in Toronto, but other locations in Canada. I'll update as I find out more, but how exciting is that?

Lastly, I will be opening up a new donation page soon. I'm just trying to figure out the best route to take. CanadaGives was a nice layout but they take 3.9% of the funds raised which is a lot with something as little known as FOP. Any suggestions or thoughts on this?

We meet again

Dear Blog,
I'm sorry I've seemingly abandoned you. I mean to write, I really do. Here is how it goes:
1) I think, "I really want to write about this in the blog post"
2) I look at my to-do list
3) I faint
4) By the time I regain consciousness, I've forgotten that I meant to write in the first place

Okay, so maybe it's not as dramatic as that. But I really have been meaning to write, so many times and I just can't seem to find the time. There is so much to say! But I will try and keep it short for me, which is pretty long for most.

Another reason that I haven't updated is that this journey has been a lot more about ups and downs than I'd anticipated. I expected everything to be breezy and full of good emotions but I've been surprised by the friction this has sometimes caused in my life. But, at the end of the day it's all been more than worth it. Nothing that is worth achieving is easy to attain.

So, here is how things are looking, we're standing at over $25,000 in donations! That's right, over $25,000! As you know, the goal is $30,000, and I'm hoping that we'll be able to reach it, judging by the amazing amount of support that we continue to receive from amazing people every day. I still can't believe what a success this all has been. When I think back on what I was aiming for when I first decided to do this back in March... I was hoping for a few hundred dollars and to raise awareness in as many people as possible. I never dreamed it would get this big.

Speaking of getting big, thanks to my amazing sister-in-law Sarah, we are now getting media coverage! I had an interview with Sean, a really nice guy from the Aurora Banner today, who told me that the story would come out in tomorrow's paper! Val and I are also having an interview tomorrow with Rogers TV in Aurora about the ride. And finally, I believe there is interest from the Era Banner about writing a piece. Oh and everybody - keep your fingers crossed! Breakfast Television is going to be in Niagara Falls near us on the Friday morning but they're all booked and they said we'll get called if anything happens... Not to wish bad luck on anybody but.........

Okay so I'll sign off right about now. I've got an interview soon and an exam. I've also got to be researching for a paper I have to write about community justice in Rwanda.... And then I also have to start packing for Israel....... Ahhhh....


Thank you again to everybody who has shown Val and I amazing amounts of support! We love you all for it!

Greased Lightning

I'm back!!! Sorry for the long absence, I really needed to focus on my studies and get all those papers and exams done.

So, this summer I decided to sign up for multiple charity fitness events in order to make sure I stay on top of training for my FOP ride. One of those events includes the 10k Sporting Life Run which is on May 2nd. Now, those of you who know me will know that I've never (and I mean never) been a runner. I suck at it. But I'm also a perfectionist and I hate sucking at things, so I figured this was a great opportunity to force myself to run more. So it happens that on Monday I'm at the gym, minding my own business, clocking some kilometres on the track, when I run [read: slow jog] by some guy who goes, "Go Grease!" to me. Needless to say, I was a little perplexed when I heard that and spent the next few laps trying to figure out what the heck the guy was trying to say. I'm thinking, "Is he calling me greasy 'cause I'm really sweaty? Am I really sweaty?" I decided that couldn't be it since I really wasn't very sweaty (yet). My next thought, which I'm sure had to do with my background in musical theatre, was that maybe he was referring to "Greased Lightning" from Grease! Maybe he was making a pun on my awesomely fast running skills. But then I realized that, no, that couldn't be it - I wasn't running awesomely fast. But then, it dawned on me that he had meant "Go Greece!" and not "Go Grease!". You see, I was wearing my Argentina soccer jersey, and he mistook the blue and white of our flag for the blue and white of Greece's flag.

However, I decided I like Greased Lightening better. Admittedly cheesy though it may be, it fits well with two themes of this recent FOP experience for me. The first is how incredibly quickly this campaign has taken off, with an amazing show of support from everybody along the way. I never, ever dreamed of it becoming as big as it has, let alone this quickly. The second (which is definitely cheesier than the first) can refer to the training that I know not only I am doing for this FOP bike ride. Everybody that has offered to bike ride along with me is training for the 140km challenge as well and I'm pretty sure we're all going to resemble some pretty greased up lightning out there on the road from Niagara Falls to Toronto.

Now that I'm done classes (for now - I'll be starting up some summer courses soon), I'll be updating this more frequently. Also, expect a lot of movement in the campaign. Those who have shown support for the FOP project have demonstrated to me how important it is to dream and dream big! Thus, I'll be writing up press releases for newspapers starting now, trying to get our story in their pages.

Wish me luck!

We should always know that we can do anything

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!

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!

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.

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