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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.

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.

 

Ok, so that was an unintended hiatus.  I guess blogging is sort of like exercise in that the longer you go without doing it, the harder it is to ever start doing it again.  Anyway, here’s the post-St Baldrick’s wrap-up I started writing a full three weeks ago.

Another St Baldrick’s season has come to a close.  St. Patrick’s Day was great, as always, even with the shift in time and the cold gray weather. Mark is bald once again, time number eight if you count the two at-home shaves he did prior to Austin’s first and second rounds of chemo.  This time he was joined by our friend Sagi, who had a serious head of hair:

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(Mark’s sacrifice wasn’t quite so big….)

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The morning after St Patrick’s Day, I attended a breakfast at Rainbow with the CEO of the national St. Baldrick’s Foundation, as well as the St Baldrick’s-funded research team at Rainbow (almost all bald) and the organizers of all the local events, which totaled eight and raised over $495,000, making Cleveland a force to be reckoned with in the world of pediatric cancer research. I should mention that our little Cleveland Heights event is hovering a mere $540 below my grand goal of $45,000 and is in fifth place in the state of Ohio for dollars raised.

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It was very inspiring to hear Kathleen speak and to be surrounded by so many other people putting their hearts and souls (and hair) into this cause.  She talked a lot about the changing face of research funding in our country given the economy and how bleak the prospects are for the coming years, mentioning that the St. Baldrick’s board of directors would really like to transform this once unknown organization based on the crazy idea of a couple of guys from a 33-million-dollar-a-year bit player into a 100-million-dollar-a-year big time player. This is, of course, wildly ambitious and will take an enormous effort on behalf of all the St. Baldrick’s foot soldiers around the country, but I do believe it can be done. And I believe it must. And I believe that we, right here in Cleveland and right here at the Community Center, can help make that happen.

I will come calling . . .

Thank you, thank you, thank you. To everyone. To all of the hundreds of people who donated money on the heads of our shavees. To our tireless barbers from Quintana’s and Shawn Paul for putting everyone at ease and working without complaint in such good spirits for so many hours. To Mike Kenney who entertained the kids with juggling and balloon art. To all of my friends (including both my mom and my honey) who volunteered their afternoon to check people in, collect cash and checks (tougher than it sounds), sell baked goods or take more than 1,500 pictures (Dallas was a busy woman!). Thank you to everyone (I have no idea who) who baked those yummy looking treats, which brought in an additional $220. And of course, the biggest and most enthusiastic THANK YOU to every man, woman and child who shaved their head or cut and donated their hair.

As of this moment in time, we have raised $43,101.71. Yup, that’s right: seventy-one cents. I wasn’t kidding when I said every penny counts. And the total continues to rise online. We may reach my original $45,000 goal after all.

That is really something. Really really something to be proud of, for all involved, certainly not just me. And more than anything, everyone should be proud of the very brave souls who climbed into those barber chairs and allowed strangers to shave their heads completely bald. It is not a small thing to do. It is a big thing, even for the men with little hair. Even for the littlest kids who don’t care what they look like. Especially for the women and girls who do. It is a serious and powerful statement to make to the children currently battling cancer. And to all those who love them.

I’m only gonna mange to tell a couple of the stories tonight, so you’ll all have to check back tomorrow. But let’s start with the father-son team who went head-to-head in a heated battle to see who could raise more money.  The younger won (ah, youth always wins, doesn’t it?), by about $80, but together they raised more than $6000. Now that’s a competition we can all support.

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We don’t actually know them all that well, but when asked why they shave, the father simply said, “We do this for Austin.”

And then there was Erica, who emailed me out of the blue a few months ago asking if women could join our event too. “Sure,” I told her, knowing women generate lots of buzz (and donations!). She wasn’t the first or only woman to sign up, but I could tell from the beginning that she was serious about this. She was driven, as I mentioned in an earlier post, by an intense fear that one of her young children might one day have cancer. And like a true hero, not one spurred into action by disaster that’s already struck, she saw this as an opportunity to do something before she was ever impacted. To do something right now. And boy, did she ever. Erica raised more than $3000, taking the coveted first place fundraising spot for our event. And she did it with courage and grace and beauty.

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There were so many more fabulous parts to the day but a picture is worth a thousand words and I have a few hundred pictures, so I’m going to add some more here and then post again tomorrow, including about a mother-daughter team and all the CHUH kids. I’m still working on a public photo gallery on Flickr, but it’s not quite ready. For now, I’m inspired by this image that was posted on the St Baldrick’s Facebook page last week:

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And here are our very own, “Oh my god, I’m actually doing this!” photos:

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And with those slightly stunned, pretty excited and damn proud faces, I leave you. But only until tomorrow, I promise.

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.

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.

And so it begins. Tomorrow is the Kick Off for the Young Authors Conference at Fairfax.  I have an author coming in from Columbus who will do three repeat assemblies in the morning, one for kindergarten and 1st graders, one for 2nd and 3rd and another for 4th and 5th.  This will include her interactive game “The Inside Track to Creative Writing.” Then eight lucky 4th and 5th graders will have lunch with her (and moi) and another 24 will attend a one-hour writing workshop int he afternoon.

I will then spend most of the month in the building, working with individual children on their stories or teaching mini-lessons on writing. I will also be coordinating an army of volunteers who will be visiting the classrooms for several weeks. By the end of the month, we will have 392 typed, illustrated and bound books.

And then in my spare time, I am co-chairing a fabulous event for Family Connections on May 12. Every single one of you is invited and strongly encouraged to attend. It’s an adult carnival (not as racy as that sounds though, I promise … or I’m sorry) with, among other things, a Wine Pull Ring Toss, Hula Hoop Contest and juggling/fire-eating act.  Click here for tickets.

And then on May 21, we’re hosting a fundraiser for Cullen Sweeney, the Democratic judicial candidate for Court of Common Pleas, who runs in the same legal circles as Mark. You’re all invited to that too — with your children.

And, this one is exciting, I will be a guest blogger on Mother’s Day on Melinda Roberts’ The Mommy Blog, an author and one of the original “Mommy Bloggers” (she’s been around since 2002 — I didn’t even know what blogging was then!) and the recipient of all sorts of impressive media attention and awards.

And I was just asked to be the speaker at a Circle of Friends event to benefit Rainbow on May 25.

And then there’s baseball practice twice a week and eventually games, end-of-the-year picnics, PTA meetings, art shows and teacher appreciation brunches calling for homemade muffins.

And, of course, we must throw in this Thursday’s Big Scans.

So, if you see me on May 31 and I’m still standing and speaking in complete sentences, consider it a mission accomplished. And know that in June, I’m doing a whole lotta NOTHIN’.

We are well on our way.

The twenty-nine brave shavees registered for the Cleveland Heights St. Baldrick’s event have raised more then ten thousand dollars. And we are well on our way to reaching our event goal of $15,000. Of course, if every shavee actually met their own individual goal as stated on their page, we would bring in a grand total of $24,710. It seems like a lot for a first year event and I know I do a lot of asking, but I believe that by working together, we can make that happen.

It’s worth remembering that St Baldrick’s is not about people’s hair and it’s not about fundraising competitions. It’s not about the entertainment at the event, although I do have a balloon bender and the Heights High Barbershoppers both confirmed , in addition to the Irish dancers. It’s not about spraying your bald head green and proudly showing off your peach fuzz.

It’s about kids. And it’s about lives. There are 36 children diagnosed with cancer in the United States every single day, 46 if you count teens and young adults. One quarter of them will not survive. More children die of cancer each year than of AIDS, asthma, cystic fibrosis, diabetes, and congenital anomalies combined. Granted, survival rates have gone up dramatically over the past twenty years and that is certainly worth celebrating (we celebrate it here every single day). But two-thirds of those kids who do survive live with life-long health complications as a result of their treatment. Sometimes these are relatively minor, like learning problems or infertility (by “minor” I only mean not life-threatening because I bet if you ask people with learning problems or infertility, they’d tell you those aren’t “minor” at all). Others live with major health consequences, like Austin. Yes, we have cured him of his cancer (so far), but at what cost? With more funding and better research, maybe there would have been targeted chemotherapies that could have shrunk his tumors without necessitating the removal of one and a half kidneys. This are not small things, trivial side effects. These are life-altering.

It is important to note that research into preventing and treating childhood cancers is woefully underfunded. While organizations like the American Cancer Society like to include images of children in their advertising materials, a measly 4% of all their dollars raised go to pediatric cancers. Of course, cancer strikes a huge number of adults and I’m not in any way suggesting that they are not worthy of improved treatments. But think of the number of years a child has to live with the consequences of having had cancer. If a 65 or 70-year old receives a chemo drug that causes heart damage in fifteen years, well …? Not great, but so be it (most Americans aged 75 to 80 will have some form of heart damage already). If a one-year-old receives that same chemo drug (as Austin did) and may have to contend with heart defects at the age of sixteen? That’s just plain wrong.

So, if you’re still thinking about signing up or donating, know that these events and the money they raise make a true difference. You are impacting the lives of hundreds of thousands of children and all those who love them. Think of the road we’ve all been on with Austin over these past four years, the pain and the fear, the grief and the worry, the exhaustion and the uncertainty. Let’s take that away from the next family. Let’s make it so no other baby, no other mother, no other family has to go through what we went through.

And yes, let’s have fun at these events — fun is part of what makes them so special for cancer families (we need a little light in the darkness of treatment), but let us never forget why we do this. Every head shaved and every dollar raised matters. You matter.

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