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In the eleven and a half years that Mark and I have been parents, we’ve heard the words “Your child has cancer” on three separate occasions. And each time, it stunned us and terrified us and brought us to our knees.

But every day we know that we’re the lucky ones because we’ve never had to hear the words, “There’s nothing else we can do.”

And the reason for that is medical research. If Austin had been diagnosed with his rare cancer twenty years earlier than he was, I’m pretty confident he wouldn’t be here today. Pretty positive, in fact. But somebody twenty years ago funded the research that saved his life. Now it’s our turn to do the same for some other child, and some other mother, twenty years from now.

I don’t run this St. Baldrick’s event for Austin, although it certainly felt that way in the beginning. Today’s truth is that Austin does not have cancer and, at the risk of inviting bad luck, I don’t believe he ever will again. If I really wanted to do something for Austin, something that would actually benefit him as an individual, I’d be raising money for kidney research. That’s our next big thing, his next big thing.

But this isn’t for Austin. And it isn’t even for Rebecca, though she too is a driving force. This St. Baldrick’s event — and all the money that comes with it — is for the next kid. The one whose name we don’t know yet, the one whose health updates don’t appear daily in our newsfeeds. It’s for the parent who hasn’t ever had to hover over a hospital bed, watching the lines on a beeping machine, the parent who’s never had to write a CarePage update, who’s never imagined holding their dying child. That parent out there who is innocently watching their healthy child, worrying every day worries, celebrating everyday successes, with no inkling of what’s to come.

Because we were all that parent once. Every one of us who’s walked around the pediatric oncology floor with a cup of weak coffee and a dazed look in our eyes was once a normal parent, with normal expectations, normal fears, normal hopes.

So, until fewer and fewer parents have to hear, “Your child has cancer,” and until NO parents have to hear, “There’s nothing else we can do,” I will keep fighting this fight. I will keep running this event, begging for volunteers, pressuring people into parting with their hair, harassing them to raise more more more. I will keep honoring our children, the few we’ve lost and the few we almost lost, alongside the many who are brave enough to sit in the barber’s chair and shave it all off for someone else. I will keep shouting from the rooftops that this is important and necessary and urgent. I will keep fighting.

And you can too. www.stbaldricks.org/events/clevelandheights

St. Baldrick’s is less than one month away and we are well on our way to the most successful year yet. As of this moment, there are 84 people signed up and nearly $17,000 raised.  This is way ahead of where we’ve been in the past, so I am super excited, especially since the vast majority of fundraising tends to happen in the final week.

I feel like the movement I’ve been hoping to start in our community is really and truly happening.  We have teams of kids from four elementary schools in CH-UH and four in Shaker plus a Gesu Team, a Rox Middle team, and several from Heights High. We also have tons of girls, not just cutting and donating their hair, but many actually shaving, including four Heights High girls (the Bald Babes) and 4th graders from both RoxEl and Fairfax and my sweet little friend Sara Schubert, a Fairfax second grader. These girls display a sense of self-confidence and self-awareness that is most impressive to me.  I’ve spoken with several of them about their decision, trying to make sure that they understand the impact of what they’re doing (as well as the dreadfully slow growing-out period they’ll have to endure!). They’ve all responded to me with such maturity and careful thought, that I am sort of blown away. We hear a lot in today’s society about how girls are bombarded with princess images and made to believe that their looks are of singular importance in their lives. And yet these girls have stated their goals with such simple clarity, as though physical appearance were far down on their list of defining characteristics: “I know I may look funny, but I’m doing to for something good so that’s okay.” Or, “Well, I think I’ll look cool with a shaved head!” I am completely moved by their commitment and their gutsiness and can’t wait to celebrate them at our event.

Another thing that I’m very excited about for this year is that I’ve finally convinced Mark to shave at my event instead of downtown like he usually does.  This is his seventh year, which means he’ll get inducted into the Knights of the Bald Table, an exclusive St Baldrick’s club for long-term shavees (that’s written with a wink and a nudge since there are no real perks to such knighthood). But now I will have the honor of knighting him, which I believe will be highly motivating to the kids present who are in their second or third year of shaving. Braedan will be next in that regard and is already eagerly awaiting his own knighthood in two years.

All in all, I think this event is extremely empowering for young people, as it gives them an opportunity to truly make a difference in their world. They are giving away a literal piece of themselves on behalf of others, and while it’s certainly a fun and cool thing to participate in with their friends, it is also a meaningful and often very powerful experience. I am so proud to be able to bring them this chance to change the course of someone’s life, as they raise money to save the next kid diagnosed, someone they don’t and will likely never know.  We have a seventh grader from Rox Middle who’s currently in treatment for leukemia and his mother said he was initially very hesitant about being honored by this event, as he’s usually the one raising money or doing good for others. I told her to make sure he knows that his participation in this event is for others. Unless he remains in treatment for many many years (which I sincerely hope he doesn’t), the money that is raised today in his name and in his honor will be used for treatments for some child diagnosed well into the future. Likewise for Austin, who is always a bit overwhelmed (and even surprised) by the number of kids who say they’re doing this for him, while Austin will never benefit from the new cancer research that gets funded by St Baldrick’s. At least, I hope he won’t since I hope he never needs treatment for cancer again. If we wanted to do something truly for him, we’d raise money for kidney research! But this isn’t about us, this is about the families who come next, the families that don’t yet know their world will be rocked by childhood cancer. This is to ease the path of the next child and the next mother and the next brother who have to bear this terrible burden.

This is why we do what we do. This is why people shave. And this is why we come to you year after year asking for your financial support. I will keep coming back to you because you also have the chance and the power to change the course of someone’s life. You too can sign up to shave your head, by linking to our event page here. Or you can make a donation on the heads of any of these brave men, women and children. Austin is here, Braedan here and Mark here.

On behalf of my extremely lucky family and on behalf of all those who don’t yet know how unlucky they may be, we thank you.

And so, another Childhood Cancer Awareness Month comes to a close. And I wonder if the general public is really any more aware. Did anyone learn anything new this month, anything that will change their actions or their giving patterns or their voting patterns? Did someone in a position of power see an image or read a story and decide to make a big change? Sometimes you wonder what it’s all for. We “like” some sad photos of sad bald children on Facebook and feel like activists. We share someone’s status update or read a heartbreaking blog written by a heartbroken parent and feel like we’ve made a difference.

We’re not really making a difference. Not enough anyway.

We walked on Saturday in the CureSearch Walk for Childhood Cancer. This was our fourth or fifth time walking and the crowd was smaller than ever. It was a gorgeous day, the route takes you through a gorgeous part of Cleveland (a very short, gorgeous part so that can’t be the excuse). There are free bagels and coffee and even post-walk lunch provided by Chik-Fil-A (trying to earn some brownie points with a non-controversial cause, perhaps?). By no one shows up. Like, really, almost no one. There were maybe 150 people registered. Couldn’t have been more than 200 there. 250 with kids and babies?

It’s weird. And sad. I know everyone has their causes and I certainly don’t go to every walk or race or stair-climb I’m invited to. And I’m not at all guilt-tripping my people for not going, I promise — not one tiny bit. I would have asked harder if I wanted you all there. St. Baldrick’s is our thing and that’s more than enough to satisfy us personally. But in terms of the bigger picture, the big, broad, general public picture and its “awareness” of childhood cancer? Well, it seems pretty non-existent.

And if the public is truly aware — aware of the truth that pediatric cancer kills more children than any other disease (and indeed more than the top five other disease killers combined), that one in every five children diagnosed won’t survive, that of those who do survive, more than 60% will have long-term, life-threatening or life-altering side effects, that less than 4% of national cancer funding goes to pediatric diseases, — if we really know all that and we still don’t show up. Well, . . . like I said, that’s sad.

We will again be walking in the Northeast Ohio CureSearch Walk for Children’s Cancer. This year’s event is on Saturday, September 28, capping off what will hopefully be a productive and effective Childhood Cancer Awareness Month (don’t get me started on the pink versus gold ribbon debate). I’ve set up a Team Austin and welcome anyone to join us. I also must mention that, upon my suggestion, the friends and family of Becca Meyer have established Team Becca, currently in first place for both walkers and dollars raised. If you’d like to join or donate on Becca’s behalf, that is totally fine with us. The reasons we walk are all the same anyway. Those reasons, in a repost from last fall, are here:

From a September 2012 article about the Walk, 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 the 28th, if you can. Stand with us. Walk with us. With Austin. With Becca. So we don’t have to add another name to this list next year. Because our work isn’t done.

 

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!).

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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??

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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:

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And another in Hawaii:

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A friend of my brother’s saw this one in a bar in Denver:

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A high school in Chicago:

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A different friend in Chicago was obviously in the very same building:

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At a Starbucks in Bowling Green:

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An ice cream shop in New Jersey:

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In Traverse City, Michigan:

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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):

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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.

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