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In light of the extraordinary fundraising prowess of our more than 70 shavees, I’ve decided to raise our event goal from $35,000 to $40,000. We are currently at just over $33K and the money keeps rolling in. I’m convinced that with everyone’s last minute push (plea) for donations coupled with the cash and checks people will bring with them tomorrow and the eventual matching gifts from the workplaces of our donors, we can do this.
To give you a sense of just how successful people are being, my two boys have each raised more than $2,000 and they are only in 4th and 5th place for our event. That means that five people have raised more than $2,000! Another five have raised more than $1,000 and there are a few more pushing the door on the $1,000 mark.
Yesterday, the 14 students from Fairfax School displayed their St Baldrick’s pride with green hair (which was sort of funny considering at least half of them were participating in the school spelling bee!).
Thank you to everyone for your generosity supporting my Braedan and Austin and all their friends and classmates, year after year, as they shave their heads. We will not stop doing this. And I am so grateful that you continue to stand alongside us as we do.
And now, know anyone who could use a haircut??
We are in our final days before the clippers start buzzing and the hair starts flying. And the ticker on our event page showing how much money we’ve raised keeps moving moving moving ever closer to our goal. Our 60 shavees and 5 hair donors are now at over $25,000 and seem to be raising more than $2000 a day!
But of course, that’s not fast enough and it’s not beyond me to make one final push on behalf of my children. They are each about 75% of the way towards their $2500 goals and with just a few extra donations could reclaim their first and second place fundraising spots. Braedan’s page can be found here and Austin’s here. I know there are many children you all know who are shaving so if you’d rather put that money down on someone else’s head, that’s perfectly fine — it all goes to the same place, after all. But, while I know it seems easier to just give a general donation to the event or to a specific team, the kids really do love to see their own dollars raised go up. So if you could just pick one, even one you may not know, especially if they’ve raised very little, and give in honor of Austin or your school or anybody you wish to acknowledge, that would make the kids feel so special.
There have been a few really sweet things that have come out of this experience, as always. The little brother a shavee handed over some carefully saved up bills to his mother and was concerned about how to split them up among all the kids he knows who are shaving. His mother assured him it was easy to divide that twenty (doesn’t look easy to a 6-year old, of course) and took the time to make small donations on the heads of about six or seven Fairfax kids. The kindergarten teacher of a preschool friend of Austin’s highlighted how this child’s sacrifice reflected the IB learner traits of being caring, risk-taking and principled. She sent this message home to parents and the following day, all the little students brought in handfuls of change and crumpled bills to donate.
There’s also a father-son shaving team engaged in a head-to-head (get it?) battle to see who will raise the most money. They are both well over $1,500 and a mere $25 separates them as of this posting. If the father wins, the son has to clean his room. And if the son wins, he gets to write on his dad’s head with a permanent marker. I don’t know about you, but room cleaning seems mighty boring so I’m rooting for the son.
And tomorrow, I will go to Fernway School in Shaker to speak to their kindergarten and first grade classes about cancer and St. Baldrick’s in honor of that school’s shaving team. Then in the afternoon, I get to speak with the three kindergarten classes at Fairfax, which is really something because not only is Austin allowing me to do such a thing, he actually asked for it! And on Saturday morning, the preschool/day care center of my nephews Van and Hill is hosting a pancake breakfast to raise funds for St Baldrick’s. So, yet again, we are moved and touched by the broad community support we’ve received so far.
And now, there are just four days left. If you’ve been planning to make a donation, NOW would be a fabulous time to do it. And if you want to bake treats for the bake sale, just let me know. I’m requesting St Patrick’s themed goodies, but anything will do.
Of course, you are all welcome to come and cheer on our shavees on Sunday afternoon. We’ll be at the Cleveland Heights Community Center from 1 to 4 pm and I guarantee you’ll have fun and be plenty inspired. Heck, you might even decide to hop in the barber’s chair yourself!
At the end of last week, I was starting to get worried about our head-shaving event this year, feeling like we didn’t have enough shavees, no one was interested, it was a one-time wonder, yada yada yada. Then I had thirteen new registrations on Friday and Saturday alone. We are now up to 47 children and adults shaving and 3 girls cutting and donating, which is a few more than we had at this point last year. It’s still not too late (I did order a few extra participant t-shirts in an optimistic moment), but it’s almost too late so if you’re still signing up, do it today.
So I’m feeling pretty good about our number of people, but the number of dollars raised leaves a little to be desired. Actually, it leaves about twenty thousand to be desired! Last year, not knowing what to expect, I aimed low, with an initial event goal of $15,000. I quickly upped that to $18K, then $20, eventually $30 and finally settled on $35,000, which we surpassed. This year, I thought I’d save myself the hassle of editing the online goal and started high: $45,000. Well, we are currently at just over $16,000 and Monday I lowered the total to $35,000. Boo.
So, now I’m gonna lay on the pressure. This is serious business. This is the business of saving lives. Every parent of a child with cancer already knows the ugly truth about how other organizations use images and stories of children to do their fund raising, but give pathetically little to childhood cancer research or treatment. The esteemed American Cancer Society gave a mere 3.7% of its nearly 2 BILLION dollar budget to pediatric cancers in 2011. Now, I get that cancer affects a great many more adults than children and I, of course, support well-funded and rigorous research into all adult cancers. But I will refuse to give the ACS a single dollar until they stop prostituting photos of sick children, all in the name of opening donor wallets. That pisses me off. (Can you tell?)
St Baldrick’s is different. All they do, all they fund, is childhood cancer research. That is what they devote every second and every dollar to. And it’s research that is truly making a difference. We have St Baldrick’s fellows right here at Rainbow, making discoveries and treating kids every day. I’ve given you the stats before: how many kids are diagnosed, how many survive, how many don’t. But think about this for a moment: the treatments that kids receive today, Austin included, are developed with adults in mind. They’re intended for use on adult bodies, which are distinct and unique from the rapidly developing bodies of young people. The chemo agents Austin had pumped into his bloodstream for all those months were never meant to be used in a one-year-old. Or a three-year-old. So, by the time they hit age 30 or 40, 73% of the “lucky ones” will have a chronic health problem as a result of their treatment. And Austin will no doubt be one of the 42% of survivors who will be living with a severe or life-threatening condition. In fact, he already is.
The very medicines we give our children to keep them alive will most likely kill them.
That’s not okay. That’s not just an unfortunate consequence, the price we have to pay for keeping our babies alive. It’s unacceptable. And St. Baldrick’s knows it. And they are working tirelessly to change it.
And guess what? You’re not just an idle bystander, listening helplessly to bad news. You can actually do something. You can save a life. And be a hero. And all you have to do is shell out a few bucks. It doesn’t even have to be on the heads of my children; they’ve raised more than $1,600 apiece. You can give to some of the lovely and brave children who’ve raised just $15. Or to the female high school senior who’s shaving her head, and who I’m really hoping will hit the thousand dollar mark. Or to the young mom who’s so terrified that her children may someday have cancer that she figured she better do something about it right now. And so she’s doing something about it, right now.
And you can too.
One thing I forgot to mention in my last St Baldrick’s post is that I am indeed adding a Bobs for Baldrick’s station to this year’s event. Any girls (or boys) or moms (or dads) who wish to cut and donate their hair for wigs can sign up as a “volunteer” on the St. Baldrick’s site (our event page is here) and then raise money much as the other shavees do. Instead of going under the buzzer, these participants will get a beautiful haircut by either Shawn Paul or Laura Griffith of the Shawn Paul Salon, if donating at least 8 inches of hair. There are four organizations to donate the hair to: Locks of Love, the best known of these organizations, will accept 10 inches of hair, which is more realistic than Wigs for Kids, which requires 12 inches. However (and this is a pretty big however), Locks of Love only makes wigs for children, teens and young adults with long term hair loss. Now, that hair loss could be due to radiation for brain tumors, but is mostly caused by alopecia or scalp burns. A worthy cause, no doubt, but this does not include the kids with cancer that St. Baldrick’s is dedicated to keeping alive. Wigs for Kids does make wigs for children with temporary hair loss due to chemotherapy (but again, they need 12 inches). There’s another group, Pantene Beautiful Lengths, run by the shampoo company, that accepts just 8 inches of hair to make wigs for cancer patients, but from what I gather it’s mostly for grown women. And I just found another group, Wigs 4 Kids in conjunction with the Children’s Leukemia Foundation that will take ten inches of hair. Either way, I’ll have envelopes and forms ready to go for all three and people can choose the day of depending on how long their hair is and how much they’re willing to cut off.
Please consider this option if your hair is long enough but you’re not willing to shave it all off. You’d still be making an enormous statement, helping children with cancer in a tangible way and raising additional research funds in the process. Let me know if you want more information about how this will all work; there are lots of little details like that hair can’t be colored and must be clean and dry, etc etc.
And again, if you’re planning to shave, please register today. I hate to be nagging and pleading, but I need to send in my t-shirt and event supply order by this Friday and I can name twenty kids off the top of my head who’ve told me they’re shaving but aren’t yet registered. It only takes a few minutes and you’ll help put my mind at ease! But don’t do it for me. Do it for Jordan. Do it for Justin, who really really needs us. Do it for the nearly 400,000 children in the US battling cancer right now. You won’t regret it.
JORDAN’S STORY: When he was 16, Jordan was diagnosed with a very aggressive soft-tissue sarcoma. The doctor said, “We have your diagnosis. It’s alveolar rhabdomyosarcoma, and you will most likely not survive.” Jordan responded with strength and a sense of calm. He was the very definition of grace, courage and strength. After 23 months of treatment, Jordan passed away five days before his 18th birthday.
During treatment, Jordan found inspiration in the words of Atticus Finch in To Kill a Mockingbird: Courage is when … “you’re licked before you begin but you begin anyway and you see it through no matter what.” Jordan’s ability to accept his fate, yet continue to live his life with passion, hope, and unrestrained joy was astounding and courageous.
Read more of Jordan’s story.
Jordan is one of five St. Baldrick’s Foundation Ambassadors, representing the thousands of kids touched by cancer each year. Learn about how you can get involved to help children with cancer, just like Jordan.
Twenty days from right now, I will be surrounded by bald children. And I hope that you will be too.
Our St. Baldrick’s head-shaving event for kids and teens (and adults) is fast approaching, now less than three weeks away. We currently have 31 registered shavees, which isn’t awful but I know there are many many more out there who’ve said they plan to sign up. Now is the time, people! If you need to be re-inspired, go back and look at these posts from last year’s event: Noble, which talks about the bravery of the Fairfax students: Heroes, short and sweet, but gets me every time (and I wrote the darn post); Thank You filled with pictures from our event; and The Petri Dish, with more pictures and the very important message that every single dollar raised makes a difference to children living with cancer and their families. I also urge you to spend three minutes and watch this video put together by St Baldrick’s.
And then, right when you’re feeling sufficiently emotional, visit our event site to sign up or donate. Braedan’s page can be found here, and I must tell you that this boy loves his hair. He wills it to grow the second he’s done shaving and isn’t satisfied until about six months later, when it starts to skim his eyebrows again. He really loves it long. So much so that I told him he didn’t need to shave this year if he didn’t want to. But oh no, he said then his friends would be less likely to shave and he wants everyone to do it so he will too. He is now motivated by the prospect of earning his knighthood by the time he’s in 6th grade, as shavees who’ve been involved for seven years are welcomed ceremoniously into the Knights of the Bald Table.
And then there’s Austin, who cares little about how he looks. His message is linked here and copied below because it’s a good one (what a little writer that 6-year old is, huh??):
Numbers, numbers, numbers . . . here are my numbers: I’m 6 years old; I’ve had cancer twice; this is my third year as a St. Baldrick’s shavee; I’ve had six abdominal surgeries, 13 months of chemo and 12 rounds of radiation; I have half of one kidney; I am a two-time cancer survivor and I am two-and-a-half years CANCER-FREE.
More numbers: Last year, I was one of 5 St. Baldrick’s Ambassador Kids and helped the organization raise more than $33 million. I was joined at the Cleveland Heights head-shaving event by 48 other shavees, including 9 kids from my preschool and 11 from what is now my elementary school. Altogether, we raised over $38,000.
This year, I ask you to consider these numbers: 38 children are diagnosed with cancer every day, 46 if you count teens and young adults. One in five of them won’t survive.
So join me. Shave your head, donate your time, contribute some money. Let’s solve this.
As I said in my email appeal for donations, I sometimes feel selfish for asking so often for others to support our causes. But then I remember that this is not about us, this is not about Austin, as he will hopefully never need to benefit from the medical advances that St Baldrick’s funds today. This is about who comes next. This is for the kid who’s diagnosed today and the one who’s diagnosed tomorrow. This is for their siblings. And this is for their parents.
So join us. Shave your head, donate your time, contribute some money. Let’s solve this.
Ready for these? Oh, they’re good ones alright . . .
From a restaurant in New Jersey:
And another in Hawaii:
A friend of my brother’s saw this one in a bar in Denver:
A high school in Chicago:
A different friend in Chicago was obviously in the very same building:
At a Starbucks in Bowling Green:
An ice cream shop in New Jersey:
In Traverse City, Michigan:
This one is just from good ol’ Cleveland, but it was cool because this church had another even bigger one posted out on the road that surprised me one day as I went running by (with no camera):
I had one that was sent to me from New Orleans that I can’t find any more. And, of course, many people told me they saw them out and about but have no photographic proof (slackers). Thank you for keeping your eye out for us over these past twelve months. It has been such an incredible honor to be the face for so many of this year’s events, especially considering the fact that St. Baldrick’s raised more than $33 million in 2012, a $5M increase over their previous record-breaking 2011. A new poster child will be revealed in January and my boys’ sweet faces will be relegated to some dusty old storage boxes. I am going to ask St. Baldrick’s to send me any extra posters they have so I can use them again in 2013.
So, speaking of St. Baldrick’s 2013, our event page is up and running, with four registered shavees: Braedan and Austin as co-captains of Team Fairfax and two brave women I don’t yet know. It’s not too early for the rest of you to get started: register as a shavee, form a team of kids from your school, club or sports team, and start spreading the word and raising money. I am setting up a special Bobs for Baldrick’s station for women and girls who want to cut and donate their hair. I’ve been advised that anyone doing that should register as a Volunteer and not a Shavee but then use the message on your personal page to describe what you’re doing to friends, family and potential donors. Let me know if you want more information about that option. I believe the barbers from Quintana’s will be shaving heads and Laura and Shawn Paul from Shawn Paul Salon will be doing the haircuts (so you can trust you’ll get a good one!)
And of course, I’ll need Registrars and Treasures too, the more the merrier, so hit me up if you’re interested. I’m really excited to do this again and am hopeful that we can surpass last year’s fundraising total of $36,146 by at least ten thousand. As importantly, I think we can surpass last year’s shavee total of 49 by about twenty. Join us . . . and be a hero for kids with cancer.
I’m still here . . . just have been ridiculously busy, mostly with school-related stuff. Too many balls in the air right now, that’s for sure. But anyway, looking ahead to my busy winter season, I invite you all to start thinking about that other month in which childhood cancer is pushed to the forefront of the public conscience . . . March.
I will again be hosting a St. Baldrick’s head-shaving event for young people in our community on Sunday, March 10. I welcome the participation of any and all of you and hope that those kids who shaved last year want to do so again and have inspired their friends and classmates to join them. I’d been hoping to convince the counselor at Fairfax to adopt St Baldrick’s as our school’s charity for the year. Unfortunately, I discovered that the entire district has committed yet again to the Pennies for Pasta fundraiser run by The Olive Garden.
Let me vent for a moment about this particular effort, promoted heavily to schools through the restaurant’s marketing team. The monies ultimately go to the Leukemia and Lymphoma Society, a worthy cause no doubt. But, despite some valiant searches through GuideStar and Charity Navigator, I can find no reports on exactly how much of the money goes there and how much stays with The Olive Garden. Maybe I’m being cynical and maybe they just hand all the donations over for the greater good, but the very name Pennies for Pasta bothers me. The idea is that students bring in their loose change (pennies) and the class who raises the most money wins a catered lunch by the restaurant (pasta). Of course, the prospect of sitting down with table clothes and real silverware in the classroom is exciting for kids and everyone likes a little motivation. But it also teaches kids that you only give when you get something in return.
One of the things I love about St Baldrick’s — and that I think proves meaningful to young and old alike — is that there are no prizes. Sure, you get a t-shirt and a button, but that’s not the same thing (and those serve to promote awareness not just of the organization but, more importantly, of childhood cancer). Instead, the children who participate in these events learn that no matter how young they are, they have the power to make a true difference. They can sacrifice in ways that (some of) the grown-ups around them are unwilling to do. That’s quite a powerful realization: I can change the world, I have impact. Not because I found some spare change in my couch cushions and won a prize, but because I gave something real, a piece of myself, and expected nothing in return.
Of course, the truth is that these kids get a lot in return and for good reason. They feel like they’re part of something important . . . because they are. They’re celebrated in their homes and schools and local media for their bravery . . . which they display in all its glory. They’re praised by their teachers and classmates and friends and families as heroes . . . because they are. No noodles necessary.
I never had a chance to post about the CureSearch Walk, as I was busy packing for my fantastic getaway. Thank you to those who joined us or donated on our behalf. We had a nice group of about 25 friends and neighbors who walked alongside us on a beautiful sunny morning. The kids, of course, thought it was all about making baboushkas out of their new bandanas and devouring free bagels. And when they called up those who had lost a loved one for the balloon release, Austin eagerly insisted on going up. “Oh-kaaaaayy,” I hesitated, trying to quickly determine which child we’d release a balloon for. I settled on our beloved Ariana (of course) and Dylan, another young friend whose story is too pathetically heartbreaking to relate on this dreary gray Wednesday.
The overall event was nice, raising more than $60,000 for research. My one friend who attended for the first time was amazed at how small it was, compared to the breast cancer events she’s used to. Which brings me to my own little pity fest, egged on by the ever-increasing pink in our world. I don’t mean to begrudge the breast cancer movement its marketing success. I am indeed amazed and impressed by the truly remarkable feat it has achieved in in just three decades, making this once-silent disease the darling of corporations and advertising campaigns. And of course I believe we need to fund breast cancer research and of course I believe that awareness raising is a part of that. And I hate to act like my disease is the only one that matters, because if we all thought that, we’d never make any progress.
But the fact that Childhood Cancer Awareness Month falls right before Breast Cancer Awareness Month does make for a stark comparison, as that wave of pink inevitably bleeds over the calendar’s edges. I remember last fall, over Labor Day weekend, a local design shop began setting up its two-story pink ribbon display facing a busy intersection. Now, I am perfectly fine with them supporting breast cancer awareness and research, but does anyone even know the ribbon color for childhood cancer? It was Labor Day, all of three days into September. Keep your pink confined to those 31 days, dammit!
Okay, that was harsh and selfish, and probably isn’t the answer at all. Maybe we don’t need to designate any set period of days or weeks to one disease versus another, just like we don’t need to confine black history to the month of February. Maybe we simply need to look at numbers and impact and fairly and appropriately fund research across the board. Easier said than done, I know. And it’s no doubt true that more adults get and die from cancer than young people do. But it’s frustrating to know that pediatric cancer kills more children each year than AIDS, diabetes, cystic fibrosis, congenital heart defects, asthma and muscular dystrophy combined. But receives 4% of all national funding for cancer research and treatment. That alone should shock us into action. Not to mention the fact that of those children who do survive, one quarter suffer from life-threatening or life-altering complications from their treatment. And a major study out of Britain recently concluded that for survivors of childhood cancers “their risk of dying earlier than their peers who had never had cancer remained significantly elevated even after 45 years.”
So, I’m certainly not proposing that we stop or slow the progress made by movements like breast cancer awareness (although some people do raise very interesting questions about the tactics and especially about the promotion of products with pink ribbons that likely contain carcinogens, see here and here). But I am proposing that we focus on what’s actually important — in the case of breast cancer, what’s actually important is not saving the ta-tas but saving lives. And the same goes for our nation’s children. We must save them, every one.
There are too many balloons in this scene:
Sorry this is so last minute but I’ve gotten a few questions from confused Walk participants, so here’s the scoop. The CureSearch Walk starts at 10am tomorrow morning at Wade Oval, right where Wade Oval Wednesdays happen (you won’t be able to miss it, I promise). If you plan to register once there, you need to arrive earlier (registration is from 9 to 10). Then we walk around the pond in front of the Art Museum and strollers are welcome. Following the Walk, there’s a ceremony, which was very moving last year. The stated end time is 1:00pm, but I don’t ever recall being there that long, and Austin has soccer starting at 11 (with team pictures starting at 10:30 — not sure we’re gonna swing that one!). You will be close to your car the entire time and are, of course, free to go whenever you choose.
In years past, we’ve all worn red, but Austin will be in his soccer jersey which is gray so that’s not much help (luckily, Braedan’s is red!). A fair sized crowd shows up but it’s not like the Susan G Komen run or even like Wade Oval Wednesdays so you’ll be able to find us pretty easily. And I’ll have my cell phone (come on now, when do I not?).
Thank you, friends! We look forward to walking with you. (And, you know, it’s not too late ... )
Childhood Cancer Awareness Month is quickly coming to a close and I feel as though I haven’t done my awareness-raising duties. So, here’s my please-come-walk-with-us-this-Saturday push, as published in The Heights Observer:
Krissy and Mark Gallagher, also of Cleveland Heights, are participating in the Walk for their five-year-old son Austin, a two-time survivor of kidney cancer. “Austin has lost his entire right kidney and half of his left to cancer,” explained Krissy. “He’s had 10 surgeries, 13 months of chemotherapy, 12 rounds of radiation, and has spent hundreds of nights in the hospital. Despite all that, he’s one of the lucky ones. Because he’s alive. Until we can say that for all children diagnosed with cancer, our work is not done.”
And that’s just it: Our work is not done.
Childhood cancer remains pitifully underfunded, with only 4% of dollars raised by the American Cancer Society going to research for pediatric and young adult cancers. That’s why our work isn’t done.
No new chemotherapy drugs have been developed specifically for childhood cancers in more than twenty years. That’s why our work isn’t done.
Austin’s cancer story, featured here in the first newsletter for the parent support group In It Together, is sadly not unique. But instead starts anew for nearly 40 families every single day. That’s why our work isn’t done.
Earlier in the month, following the fabulous Stand Up To Cancer telethon, there were many Facebook statuses that read, “I stand up for. . .” I commented on one, listing the names of eight children: Austin, Ariana, Ashley, Dylan, Olivia, Abby, Seamus and Emily. Afterwards, I sat back and read over my list and realized that only two of them, including my own Austin, were still alive. Two out of eight. That’s why our work isn’t done.
Please join us for the CureSearch Walk on Saturday, if you can. Stand with us. Walk with us. Because our work isn’t done.
