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!

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 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 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 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.

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 -

I appreciate all that you are doing and CAN'T WAIT FOR THE BIG

with gratitude,

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


Anonymous said...

Emily, I'm honored to be able to help you and Marc fight this monster that has shattered so many families. My thoughts and prayers are with you always and I will help you fight this fight until these precious children walk out of the hospitals and back to their homes healed and whole again. Love, Aunt Lynne

Autumn said...

I've been following this blog since I first saw the link on Ethan Powell's website, but I never have commented on anything. Your family has been in my prayers and thoughts throughout.

I'm actually entering college this fall to be a Pediatric Oncology nurse, and it's mostly because of Sophie.

Thank you for always sharing her story and the awful battle that she fought. It makes a difference in so many lives.

Taneka Gibson said...

Hello Emily and family. I'm the mother of the 2 1/2 year old girl Ari Noelle Rich who received a grant from you to help bury my daughter. I'm so greatful for your assistance and thank you very much. Ari was diagnosed Dec. 9, 2008 and only survived 6 months. How could she appear so healthy but have a deadly disease? Why does this have to happen to our kids? I would not think twice if I had the choice to trade places with any of them. I'm so saddened when I think about the "quality of life" she endured that consisted of having weekly labs, taking chemo infusions for several hours, the bitter medicine taking orally daily, being put to sleep everyday for weeks for radiation, my baby being scared when she passed and the thoughts of how much pain she was in is sickening. My heart is torn. I lost the one person in the world who loved me.I find myself angry when I awake in the morning because I'm still alive. What if she thinks it's unfair that she's not here anymore? How do you cope with this?