Saturday, June 13, 2009

The Home Stretch


Greetings Smiles For Sophie Supporters! I wanted to take a minute, or two, or three, to share with you some thoughts and some information about our upcoming fundraising events.

This Sunday, June 14, there will be a benefit concert in Trenton, MI. The concert is being performed at St. Philip Lutheran Church on Fort Street. It starts at 4:00. A donation will be accepted at the door. The concert will feature a medley of show tunes, pop and country music presented by several vocalists with pianist accompaniment. If you live near by, take a break from the yard work, and enjoy some music, all for a good cause.

The 3rd Annual Smiles for Sophie Golf Outing will be held on Tuesday June 23 in Grand Blanc, MI. Please see the website for more information and to download the registration form. In addition to golf, there will be raffles and SFSF items for sale. There is still time to secure your spot. We'd love to see you there! Find your team and mail in your registration today!

Our 2nd Annual Birthday Bash & Dash is only 3 weeks away!

Early Packet Pick-Up:
Avoid the lines on Saturday morning by picking up your packet or registering for the race a couple days early. We will take late registrations, as "Day of Race" registrations, during these times with an entry fee of $25.

Thursday, July 2, 2009, 6-8 p.m.
Dairy Queen
33720 Walker Rd
Avon Lake, OH 44012

Friday, July 3, 2009, 10 a.m. - 2 p.m.
Walker Road Park
31621 Walker Road
Avon Lake, OH 44012

If you are unable to pick up your race materials early, pre-registration check-in and packet pick-up on RACE DAY, July 4, will be from 7:00-8:45 a.m. at Walker Road Park.

TV Raffle:
Just a date change for the sale of the Sony 40" Bravia LCD HD TV ($1499.99 value) raffle tickets. They will go on sale on July 2 at the early packet pick-up at Dairy Queen and will also be available on July 3 at Walker Road Park and then on July 4 during the Birthday Bash and Dash. Tickets will be $20 each and only 200 tickets will be sold. The drawing for a winner will be held after all 200 tickets are sold. This TV was donated to us and by selling 200 tickets we will raise $4000. That will be enough to provide 4 $1000 grants to the families that so desperately need it. It's a great opportunity for you to win a great TV for only $20! Not to mention you are supporting a great cause even if you don't win!

Hotels:
The posted deadlines for the hotel room blocks has passed, however I called the three hotels and at this point, they do still have rooms available and are willing to continue to give them to Birthday Bash and Dash participants at the rates posted on the SFSF website, until all are booked. So, if you are planning on attending the race and will need a place to stay on Friday or Saturday night, please call one of the three race hotels as soon as possible to secure the discounted rates.

Deadline for printed materials:
As you may recall from my last post, the printing deadline for the program, race t-shirt, and banner was extended until June 15. That means there are still a couple of days to solicit corporate sponsorships and gift in-kind donations. If you know of any company that may be able to help us reach our $75,000 fundraising goal, please contact them this weekend, or on Monday morning!! We are still looking for goody bag items, door prizes, items for the silent auction, flowers and other decorations, as well as monetary donations. Donors can fill out the short paperwork listed on the SFSF website, and will still make the printing deadlines giving them an advertising opportunity...the website, the program, the race t-shirt, the banner or all depending on their level of support (please see corporate sponsorship forms on the SFSF website).

Race registration:
We are currently at 144 race registrants, which is great, but we'd love to see the numbers we had last year, which was 890+!! So, please tell everybody you know about the Birthday Bash and Dash and encourage them to sign up now! Last year's event was awesome and a fun time for all. The early bird registration, which guarantees a race t-shirt, goody bag, and a chance to win a door prize is $20 for adults and $15 for kids. This closes on June 27. All entries must be complete through active.com by midnight on June 27 or mail-in entries must be POSTMARKED by June 27 to be counted as early bird. After that date, the entry fee is $25 for all ages and unfortunately, no guaranteed race t-shirt, goody bag or door prize entry. But, like last year, if we happen to have "extra" race t-shirts, they will be given to late registrants on a first come, first serve basis, starting at early packet pick-up on July 2, until all shirts are gone. We highly encourage you to register prior to June 27 though, or actually AS SOON AS POSSIBLE...those guaranteed race t-shirts being worn around the area and across the country will certainly help us raise AWARENESS about pediatric brain tumors!!

Race planning meetings:
With the event just around the corner, we only have two more race planning meetings. The next meeting will be on June 16 at 7:00 pm at the Avon Lake Library. If you haven't come to any of the previous meetings, but would still like to help, please consider joining us at this next meeting. It's never too late! Certainly there is a lot of planning that has already gone into this event, however, on race day, we can use all the volunteers we can get!! If you are available on July 4 to help with set-up, decorations, parking, or anything else we might need, please come on Tuesday to see where you can volunteer. If you can give even an hour, we would be so grateful. If you want to run or walk, you can still do so. There are plenty of jobs to be had before and after the race. Please contact Kristin at kristin@smilesforsophieforever.org if you would like to volunteer. If you know of any high school students who would like to help, this is a great opportunity to earn some volunteer hours. The final race meeting will be on June 30 at Walker Road Park at 7:00 pm. This is an important meeting so if you've committed to volunteering, please try to be there. We will be updating the website with the course map in the next few days. Please check back for other updates.

As of Tuesday, we have awarded $26,000 in family grants. Although awarding the grants means that another child and their family are suffering through what we did just 2 years ago, we couldn't be more proud to be giving this money, the money from you, our dedicated supporters, to families who so desperately need it. However, we can't continue to fulfill this part of our mission without your continued support. We know times are tough for many, but if you can donate even $5 or $10, we would greatly appreciate it...no donation is too small as they all add up and allow us to continue helping families and funding research. Here is the link one more time. http://www.active.com/donate/smilesforsophie2009

I ask you to please pray for so many kids who are facing progression and struggling with the daily actions we so often take for granted. I ask you to pray for their Moms and Dads who put on a happy face for their child(ren) while their hearts are breaking into a million pieces. I ask you to also pray for a cure, so that one day, we will not need to ask for your money, because our work will be done.

A friend of mine sent me this poem yesterday. I needed to hear it. With all the stuff to be done for the race, it seems like the days have been a blur. The "work" keeps me busy during this emotional time of year. Everyday is emotional, but lately, my eyes have been welling up with tears at the drop of a hat. Often times I feel like I am going backwards in this grief process, when I should be moving forward. I thank those of you who have sent emails and/or cards to let us know you continue to think of us. It is comforting to know that you haven't forgotten Sophie and the suffering we all endured.

SLOW DANCE (author unknown)

Have you ever watched kids
On a merry-go-round?
Or listened to the rain
Slapping on the ground?
Ever followed a butterfly's erratic flight?
Or gazed at the sun into the fading night?
You better slow down.
Don't dance so fast.
Time is short.
The music won't last.

Do you run through each day
On the fly?
When you ask "How are you?"
Do you hear the reply?
When the day is done
Do you lie in your bed
With the next hundred chores
Running through your head?
You'd better slow down
Don't dance so fast.
Time is short.
The music won't last.

Ever told your child,
We'll do it tomorrow?
And in your haste,
Not see his sorrow?
Ever lost touch,
Let a good friendship die
Cause you never had time
To call and say "Hi"?
You'd better slow down.
Don't dance so fast.
Time is short.
The music won't last.

When you run so fast to get somewhere
You miss half the fun of getting there.
When you worry and hurry through your day,
It is like an unopened gift....
Thrown away.
Life is not a race.
Do take it slower
Hear the music
Before the song is over.

Today, it was nice to take a break from all of the hustle and bustle and spend the gorgeous morning at the park with Sarah and friends. I was pushing her on the swing with my "to-do" list running through my head, when I looked up and noticed a rainbow in a full circle around the sun. There was not a cloud in sight. I know it was Sophie smiling down at us.

I leave you with a portion of the message that our Race Director sent out to the volunteers earlier today. It shows you just one example of how important our work is to families battling brain cancer. It's obvious..."Pediatric Brain Cancer Doesn't Make You Smile."

"Hello Race Volunteers...

...I also have the privilege of serving as the Grant Committee
Chairperson for Smiles For Sophie Forever. To date the Foundation
has given $26,000 to help families of children suffering from brain
tumors and $15,000 to St. Jude - $10,000 of which directly
researches donated DIPG tumors. As chairperson of the grant
committee I get calls almost on a daily basis from families with a
child suffering from some type of brain tumor. Yesterday I got a
call from a social worker who was acting on behalf of the family of
a little girl who died just this week from a DIPG - she was 2 1/2
years old. Her mother had requested a grant application from me
last week. The social worker called to see if the family would
still be able to get the grant because the mother wanted to bury
her daughter instead of cremating- but she did not have enough
money to do so. I assured the social worker she would still be
eligible for the grant. When I hung up the phone my heart just
sank - again. These are the families we are helping - at all
stages of the fight against pediatric brain tumors. AND when I say
"we" I mean every person who ever raised money, volunteered time,
shared food, shared Sophie's story, passed out our a flyer,
attended a fundraiser, or put a magnet on their car. I mean -
YOU! THANK YOU! OUR WORK IS SO IMPORTANT AND WE ARE MAKING A DIFFERENCE!

I appreciate all that you are doing and CAN'T WAIT FOR THE BIG
PARTY ON JULY 4TH!

with gratitude,
Kristin"

Blessings to you all, and thank you for your continued support.
Emily

Monday, June 1, 2009

We Need Your Help


Today is June 2, and the end of Brain Tumor Awareness Month. I looked hard last month for some mention of pediatric brain tumors in the media, and didn’t find much. I realize that there is an obvious lack of public awareness when it comes to brain tumors, because we just don’t hear enough about it from the media. However, I expected to hear more in May because it is now a nationally approved month recognizing “Brain Tumor Awareness” but sadly I didn’t. I wrote to a few different media sources…Oprah, The View and more, hoping to gain a national audience but I didn’t get a response. I wore my brain tumor awareness shirts as often as I could, and made it a point to mention brain tumors and tell Sophie’s story to strangers. Just because May is over, I will not stop trying to raise awareness about brain tumors, especially DIPG. Hopefully you will join me in raising awareness by continuing to share Sophie’s story.

We are getting excited about the 2nd Annual Birthday Bash and Dash and the planning is coming along nicely. We are slow with the fundraising efforts this year, so we are asking for your financial support, as this is our largest fundraiser and the primary source of income for our research and family grants. We realize that we are living in a tough economy, as family and friends of ours have had to deal with pay cuts and/or job losses. It’s hard to ask for money when we know many people have little extra to give, but when I read something from Marlo Thomas at St. Jude, it put it all into perspective. She made reference to the fact that just because we are in a recession, the needs of children with cancer are not. In fact, the recession makes the needs of these families even greater. If you are going through a tough time financially, imagine going through it with a child who has a DIPG, or some other type of terminal illness. Nothing could be worse. We were fortunate during Sophie’s illness not to have financial worries and the experience was still a living hell. I can’t imagine those families living the nightmare and also worrying about mortgage payments and food to eat. I’m asking you to consider making a donation to our race. To donate online, follow the link below, or you can mail a check. http://www.active.com/donate/smilesforsophie2009 We thank you in advance for your support. By making a donation of any amount, you truly are making a difference in the lives of families afflicted by pediatric brain cancer. You can read about the families we have helped by going to our website and clicking on the "How We Have Helped" tab. To date, we have granted almost $25,000 to families, with another $15,000 given to St. Jude, of which $10,000 has been designated specifically for DIPG research.

We are hoping to make another donation to fund a research grant of some type. We don’t know yet what it might be, but we realize the need for a cure as we read about more and more children diagnosed with brain cancer who are given very little hope. I’m including some information that I found through the DIPG online group. It’s another wake up call regarding the deadliness of DIPG. In a Korones Review article from 2007 regarding DIPG it says ".... We have made little progress in curing children with the devastating and vexing tumor. It's deep and critical location precludes surgery, its transient response to radiotherapy, its refractories to chemotherapy and its elusive biology have all conspired to make it a uniformly lethal disease....."
The Mikey Czech Foundation recently released some stuff from Dr. Mark Kieran "During the past 35 years, there have been 250 clinical trials for DIPGs and not one of those has been successful. Not one!" So please, I can’t say it any other way…we need your financial support!

Below is more information about sponsorships for the race, as well as information about the TV raffle that will start on July 4th. We are discussing the possibility of having a few silent auction items at the race, so if you have items to donate, please contact Kristin at kristin@smilesforsophieforever.org We thank you again for your support, and we would be honored to see you at the race on July 4th! You can register online at http://www.active.com/framed/event_detail.cfm?EVENT_ID=1718940&CHECKSSO=0

ADVERTISING DEADLINE:
The printing/advertising deadlines for corporate sponsors, gift in-kind donors and personal donors has been extended to June 15. So, if you were planning on donating to support the SFSF Second Annual Birthday Bash and Dash, please get your donations in so you will be included in our printed materials. See the list below for the various donation levels and corresponding advertising.

Red ($100): internet advertising
White ($250): internet advertising, name on race day program
Blue ($500): internet advertising, name on race day program and race tshirt
Firecracker ($1000): internet advertising, name/logo on race day program and race tshirt
Grande Finale ($2500): internet advertising, name/logo on race day program, race tshirt and race day banner

If you will be donating at the $1000 level or above, please be sure to email your logo to sarah@smilesforsophieforever.org.

RAFFLE:
This year SFSF will be holding a raffle for a Sony 40" Bravia LCD HD TV ($1499.99 value). There will only be 200 tickets sold and the tickets are $20 each. Tickets will go on sale on July 4, during the Birthday Bash and Dash, and the drawing for the winner will be held when all 200 tickets are sold.

SPONSORS AND GIFT IN-KIND DONORS:
If you know of any company who might like to be a corporate sponsor or of any company who may be able to donate items we could use, such as flowers, food, water, goody bag items, etc, please contact them ASAP. The slow economy has definitely affected the race this year, but there are still kids and their families who need our help. To date we have awarded $21,500 in family grants and we know the applications will continue to come. So, please solicit support from wherever you can. All applicable forms are on the SFSF website.