Summer, 2014

Issue 23

Emily's Intro...

My living room and dining room are overflowing with raffle baskets; my dining room table is surrounded by boxes of stuff that we need for race day; and the table is covered with raffle prizes, race decorations, supplies and papers. My phone is beeping as the emails and texts come in. There are early mornings and late, yet sleepless nights, as I write the next day's to-do list while I lie wide awake.

My sister and her family are here to help with the last minute details, and I try to spend some time with them to take my mind off of all that needs to happen in the next four days. I knew the race would sneak up on me as it always does. The months of planning will come to a close this Friday morning with what looks to be great weather as we celebrate the life of my sweet Sophie who should be turning 11. Gosh how I miss her. It hardly seems possible that it has been almost eight years since she was here with us. Still unbelievable to me that she only lived four short years, and how unfair that she only celebrated three "happy" birthdays since we all knew her fourth birthday would be her last.

I'm sad, yes I am sad, but if life has to be this way, I will look for the positive and the happy things in my life. And Smiles For Sophie Forever is one of those happy things. I am proud of what we have accomplished and so very grateful for my family and friends who continue to dedicate their time and talents to making the Foundation and our Birthday Bash and Dash a huge success. We have so much fun planned for Friday and there is still time to register. This is our biggest fundraiser, and we really need your support to help families of kids with cancer and provide money to fund research so we can cure the evil disease of cancer.

I hope you will consider joining us on Friday, but if you cannot attend, you can support us by donating via our online Bash and Dash fundraising page.

I don't think I have ever written an introduction this short, but I don't think we have ever tried to send out a newsletter this close to July 4. My Mom and sister have been working like crazy to get the articles written and formatted and my part is all that needs doing. I want to write more, but dinner has to be made and Sarah taken to a swim meet in the next 20 minutes, and my list of things to do is not getting any shorter. Four days until our Bash and Dash --- they will fly by, just like the life of my beautiful Sophie did.

With gratitude and hope,

Emily Quayle

SFSF Board President

Sophie, Sarah, and Marie's Mommy

Bring on the 7th Annual Bash and Dash!

Only three days away, the 7th Annual Smiles For Sophie Forever Bash & Dash promises to be a perfect way to begin celebrating our nation's freedom on the Fourth of July. Friends and family of Avon Lake and its surrounding communities, along with avid SFSF supporters will be enjoying the activities and "running towards freedom from pediatric brain cancer."

New to this year's event is the Clicks for a Cause photo booth and opportunity to have professional family, team, or group photographs. The photo booth features four (size) prints for just $5.00 each and supplies Americana hats, beads, leis available for picture-taking in real Fourth of July style; the group photos and candid event photos can be ordered on-line, direct from Clicks for a Cause website, after the race. Clicks for a Cause will donate 20% of all sales to SFSF. The opportunity to capture the memories by professional photographs will leave cell-phone photographers a chance to save their batteries.

Registration for the race is still open, on-line until midnight, July 1; at packet pick-up at Holy Spirit Church, July 2, 5-8pm; and of course on July 4, 7:00-race start at Walker Road Park. A limited number of race T-shirts have been ordered, and will be available on a first-come, first-served basis to those who registered after the early-bird deadline of June 11. Those who are late in registering have the opportunity to earn a dri-fit "100-Club" race tee if they raise $100 before midnight on July 3, 2014. Parking at Walker Road Park is limited, but a $5.00 donation will entitle donors to a spot at the site. Parking passes can be purchased at packet picket, and if still available at the park entrance on the day of the race. All others must park at Holy Spirit Church on Walker and Lear Rds. and be shuttled to the park.

In addition to the race, the kids' activities have expanded and will include three professional balloon-twisters, a cookie/brownie walk, a nail-painting and tattoo booth, sidewalk chalk art, a rainbow craft and a Fourth of July craft, age-category 50-yd. dashes with 1st-3rd place ribbons, age-appropriate bounce houses, an inflatable slide and climbing wall. Lowe's employees will be on hand with a kid's building kit, and Fit Me Up will again provide a kids' obstacle course. Sno-cones and cotton candy will also be available. Children registered for the race will receive wrist bands allowing free participation in all events. Additional wrist bands may be secured for non-registered children for a donation at the event.

The race will begin at 9am with the playing of the National Anthem and singing of "Happy Birthday, Sophie." Flowers will be given to runners and walkers to leave on the Quayle's lawn in Sophie's memory. After the race, fruit, bagels, and water will be available, along with cold, wet, cooling towels. In true birthday spirit, cupcakes will be available for all.

In addition to the traditional 50-50 raffle, there will be auction items, with silent bidding, and a Chinese raffle. Up for silent bidding will be a tailgate and bar-tasting package for ten at Market in Rocky River, two sets of club seat tickets for four to the Brown's game, a 3-month membership to the YMCA, a 3-month membership to Avon Center for Health, 20-wks of classes at The Little Gym, a set of club seat tickets for four to an Indians game, two tickets to the Jimmy Fallon show and assorted Tonight Show goods, massage and photography packages and more!

Chinese raffle items include a "Believe" Scentsy burner with bars, Thirty-One totes, a Crock-Pot and cook book, a two and a half foot stuffed Dalmatian, a duct tape basket, a 16-piece, stainless steel Lazy Susan Fondue set, a Hallmark Card basket, bar baskets, Avon Lake apparel, fitness packages and much, much more.

Concession style food: hot dogs, chips, and lemonade will be available for purchase. The Awareness Tent will feature pictures of some of the more than two hundred children whose families have received SFSF grants; the SFSF store will have logo-themed apparel and items on sale. In short, or long, there will be something for everyone.

Saline School District Does Denim Day

Jamie Collins, long-time friend and school mate of Emily Quayle and current physical education teacher for the Saline, Michigan School District was instrumental in securing a district-wide denim day for SFSF. Denim Days, popular fundraisers in the district, require the sanction of the superintendent. With her request submitted and approved, the Saline District earmarked Friday, May 2, 2014 as SFSF Denim Day. $500 was raised, and SFSF benefitted from those teachers who paid $5.00 each to wear jeans on that Friday. SFSF thanks Superintendent Scot Graden for his approval, Jamie for organizing, and the Saline staff members who participated.

A gift consists not in what is done or given, but in the intention of the giver or doer.

~ Lucius Annaeus Seneca

Michigan Golf Outing Re-scheduled for August

Registration for the Eighth Annual SFSF Michigan Golf Outing at Warwick Hills in Grand Blanc, MI, is on-going. Originally scheduled for June 16, the outing had to be postponed until August 25, due to the loss of 10 of the 18 greens from last winter's harsh weather. (Remember last winter? No, forget last winter!) Discovered in May, the ten greens had to be refurbished before the course welcomed golfers.

The $175 fee per golfer ($700 per foursome) includes green fees, cart, driving range privileges, awards, hors d' oeuvres, and dinner. Long-time home of the Buick Open, Warwick Hills is renowned for its large, outstanding greens and relatively short, parkland course of just 7,127 yards.

Organizers for the eighth consecutive year are Sophie's paternal grandparents, Bob and Kathy Quayle and Sophie's aunt and uncle, Brett and Amy Quayle. Register on-line and contact Bob Quayle (810-241-8340) or Brett Quayle (810-252-3053) for questions or additional information.

Come August 25, the new greens should be more than perfect.

Out of the mouths of babes...Outstanding

SFSF receives many heartwarming thank you notes and letters, positive feedback and congratulations, and thoughtful and poignant inquiries, but the little note pictured here was too precious not to share with all SFSF supporters. Hope it brings both smiles and tears.

Gratitude is the memory of the heart.

~ Jean Baptiste Massieu

July $2,000 Contest and $5 New Member Bonuses Mean Bigger Donations for SFSF

Summer's a great time to help Smiles for Sophie Forever just by sharing. Each person who joins iGive (for the first time) in July and names "SFSF" as their cause guarantees a $5 donation to SFSF. It's that simple. No purchase is necessary, just try the iGive Button through 10/15/14.

Furthermore, the person who gets the most new members to join iGive in July and try the Button through 10/15/14 earns $1,000 for his or her cause - no matter what cause or charity the new members they invited choose to support. $500 prizes go to the second and third place winners' causes.

SFSF grants near $500,000

Since March 1, 2014, the Foundation has helped 11 families and awarded $10,700 in grant money, bringing the total amount of family grants awarded to $332,253. The grand total donated by SFSF, including donations to The Cure Starts Now ($77,000) and St. Jude ($70,000), is $479,253.

Every month, the SFSF Grant Committee approves applications for financial assistance for families of children with brain cancer. The children of the families who received grants in March and April 2014 are (there were no applications in May 2014):

Natalia, age 10 - infiltrative bithalmic mass
Michelle, age 18 - medulloblastoma
Haley, age18 - anaplastic astrocytoma grade III
Anonymous, age 7 - DIPG
Anonymous, age 2 - ATRT
Anonymous, age 2 - pilocytic astrocytoma
Anonymous, age 3 - medulloblastoma
Destiny, age 4 - brainstem glioma
Alexius, age 15 - brainstem glioma
Jah'Navi, age 6 - passed away in Dec 2013 from a DIPG
Michael, age 9 - passed away in May 2014 from a medulloblastoma

In This Issue

Bash and Dash

Saline's Denim Day for SFSF

MI Golf Outing still on!

Sincere "thank you"

iGive for SFSF

SFSF Family Grants

Supporting the search for a cure

OH Golf Outing success

St. Jude Marathon Weekend Team

Origami Owl fundraiser

SFSF's new domain name

Best of the West again!

Sympathies

What comes in, must go out!

The Cure Starts Now logo

A great deal of planning, organizing, labor of love, and pure generosity is involved in SFSF fundraising activities as evidenced by the events covered in each Smiles For the Season. And SFSF is proud to announce that what comes in, just goes out. At the May 16, 2014 SFSF Board meeting, Board members voted unanimously to donate $20,000 to TCSN (The Cure Starts Now) to help fund its DIPG Collaborative which awards research grants, which according to its stipulations, to only those who share their results with other researchers in the Collaborative. SFSF has continued to support TCSN's efforts, and to date, has donated $77,000 to further the mission of TCSN.

Most recently, the DIPG Collaborative is a proud sponsor of the 16th International Symposium on Pediatric Neuro-Oncology (ISPNO), being held now in Singapore. ISPNO brings the leading neuro-oncologists, researchers, institutions and foundations together to present research data, discuss treatment options and explore promising developments in the world of pediatric brain tumors. SFSF, along with several other foundations, has been instrumental in funding the DIPG Registry through its participation in the DIPG Collaborative. The Collaborative has in turn provided over $3M in targeted research funding for DIPG and is moving to be the driving force in making the DIPG Registry the benchmark in the international research community.

Over the next 12 months the DIPG Collaborative has committed $1M to fund promising research projects, clinical trials, and targeted studies to move the bar closer to finding a cure for the most deadly type of pediatric brain tumors. At this year's ISNPO there is an increased emphasis on DIPG and shows that the diligence of the DIPG Collaborative is succeeding in getting international attention.

Keith Desserich, Chairman of TCSN International, and part of the DIPG Collaborative steering committee, is presenting at the ISNPO Symposium, but plans to make it back to the U.S. in time to be here for the Birthday Bash and Dash.

st. jude logo

In addition, the SFSF Board voted to donate $20,000 to St. Jude, where Sophie was treated in 2007, in the name of the 36-strong, Smiles For Sophie Forever Team. The team will participate in the St. Jude Marathon Weekend in Memphis, December 5-7, 2014. The $20,000 donation brings the total donated to St. Jude to $70,000. This donation helps not only St. Jude, whose operating costs are $1.8M per day, but also helps the St. Jude Heroes to secure rooms in Memphis for the event weekend, enabling them to focus on their individual fundraising and training. Not including this year's fundraising, Team SFSF has raised an additional $60,804 for St. Jude.

SFSF thanks all donors and supporters who make this grant-giving possible.

Those who expect to reap the blessings of freedom, must, like men, undergo the fatigue of supporting it.

~ Thomas Paine

All is more than well at Ohio Golf Outing

The 2104 Ohio Golf Outing crew!

The Third Annual SFSF Ohio Golf Outing added $9,735 to SFSF coffers; it was a great day for golf with temps in the 70's and a really great day for SFSF. There were 24, foursomes, who enjoyed not only a day of golf, but the afterglow festivities as well. Live music was provided by Phil James and Paul Pope during and after dinner, which was served by Italian Creations. And of course, the open bar, provided by the dinner and beverage sponsors helped tremendously, especially those who may have not golfed as well as they expected. Taking first place was the team of Brian Slife, Matt Slife, Shokri Wahib, and Bruce Wilson. Martha Bodde won the 50-50 drawing, and after "taking a little for her grandkids' good report cards," donated the majority of her winnings back to SFSF. Winners of the various contests and betting hole were awarded either gift baskets or gift certificates. SFSF thanks all sponsors, volunteers, and participants and hopes that all will be back again next year on Saturday, June 6, 2015 for the Fourth Annual Ohio Outing.

SFSF could never do it without the awesome volunteers!

SFSF St. Jude Marathon Weekend team

grows and grows

Thirty-six, yes, that's 36 runners have registered as members of the Smiles For Sophie Forever Team for the St. Jude Marathon Weekend, Dec. 5-7, in Memphis, TN. This is the largest SFSF team to date, surpassing the 21 who were not discouraged by last year's ice-storm cancellation, as all but three are returning this year, having recruited more of their friends and family members. Veteran and newcomers include marathoners, half-marathoners, Grizzly House 5Kers, all eager to run in Sophie's memory and honor for the sixth, consecutive year.

Fundraising for all team members is on-going, and with the $20,000 donation from Smiles For Sophie Forever, the team has raised $29,365 to date. The majority of the team have registered as St. Jude Heroes and have pledged to raise either $2500 (gold), $1000 (silver), or $500(bronze). Visit Team SFSF's fundraising page to see a list of team members and to donate.

In the five years that SFSF has been represented at the St. Jude Marathon Weekend, $110,804 has been donated to St. Jude, $50,000 from SFSF and $60,804 through individual fundraising efforts. With an operational cost of $1.8 million a day, St. Jude greatly benefits from this annual event, as do all the children treated at St. Jude.

Keep posted of Team SFSF's progress in the fall edition of Smiles For the Season.

St. Jude Heroes

Volunteers are paid in six figures...

S-M-I-L-E-S.

~ Gayle LeMaire

OOOHH! --- Origami Owl to benefit SFSF

SFSF is hosting an on-line Origami Owl Jewelry Bar until August 31, 2014. Thanks to consultant Shannon Boros, the sales event is open to all SFSF friends, family, and fans. Customers may shop online any time, day or night, in PJ's or yoga pants, without worrying about free nights and babysitters. The Jewelry Bar Code is: SmilesForSophie354368 and the password is rainbows. The rage in personalized jewelry, Origami Owl offers the perfect gift for grandmas to granddaughters. A favorite item, the charm necklace, along with a rainbow charm, donated by Shannon, will be among the Chinese raffle items at the Bash & Dash.

Soon to be "sfsf"

Soon, very soon, the smilesforsophieforever.org website may be accessed with simply "sfsf.org." When The Foundation was established back in 2008, and the website was created, the entire name "Smiles For Sophie Forever" was created in full to establish The Foundation's name. With a data base of more than 2500, and frequent hits to the site, The Foundation decided to make things easier for our supporters. Using "sfsf" was not just a matter of shortening our logo as "sfsf" was owned by a now-defunct organization in San Francisco and the domain had to be purchased. Soon "sfsf" will belong to Smiles For Sophie Forever, making access to the site easier and more convenient for loyal supporters and newcomers.

Bash & Dash wins again!

SFSF has done it again...taken top honors in West Shore's live well as the best charity race in the western Cleveland area. Nominated six times and top winner four of the six times, the Bash & Dash will work diligently to live up to its standards this July 4th at Walker Road Park. See Bash & Dash article.

Voting took place April 10, 2014, at the LaCentre Banquet Facility in Westlake, where competitors in over 60 categories vied for top honors. SFSF representatives Marc Quayle, Maureen Dando, Michelle Polinko, Katie Evanchick and Amanda attended the event, manning the SFSF display and sharing Sophie's story and details of The Foundation and The Bash & Dash. Moreover, at the showcase of nominees, $170 was donated to SFSF by event participants.

Winning four times is good reason to come to Walker Road Park this Fourth of July to see what makes The Bash & Dash a winner!

~Sincerest Sympathies~

SFSF extends heartfelt condolences to the family of Michael Orbany on the passing of their dearest Michael. Michael, last summer's Smiles For the Season "Spotlight" passed away on May 1, 2014. This very brave young man will be remembered and honored by those who knew him by "NEGU is For Us Now."

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